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February 2021
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Symptoms

Bladder Effects (Hemorrhagic Cystitis)

The urinary tract is a common area for infection in the general population as well as BMT patients. However, in BMT patients bladder inflammation caused by the use of cyclophosphamide prior to most transplants can often occur. This can resemble a urinary tract infection with symptoms including burning and frequent urination as well as visible blood or blood clots in the urine. This complication is called hemorrhagic cystitis.

Management

To prevent this, large volumes of IV fluids are given while you receive cyclophosphamide in order to flush out the bladder. You are also encouraged to urinate as soon as you get the urge in order to prevent the drug from sitting in the bladder for too long.

Bleeding & Transfusion

Bleeding as a Side Effect

Patients receiving chemotherapy or having a bone marrow transplant will have a period of time when their platelet count is low. Platelets are responsible for promoting clotting of the blood, and when they are low, patients are prone to bleeding (hemorrhage).

Patients with low platelet counts may also experience excessive bruising, but this is not generally a serious complication. On the other hand, when bleeding occurs from the gastrointestinal tract or into the lungs or brain, this can be life-threatening.

Management

The risk of serious hemorrhage is minimised by transfusion of platelets when the platelet count is less than 10. In situations where patients are already bleeding or have a high fever, platelet counts are usually kept at an even higher level.

Transfusion Risks, Side Effects & Management

Everything possible is done to reduce the risks associated with blood transfusions; however, you should be aware of the possible risks:

  1. Viral infections: Although blood products are rigorously tested and screened for viruses before being released by the Canadian Blood Services, it is possible that viruses may be transmitted to a patient through a transfusion. The risk of this is exceedingly low. While any blood transfusion that can be avoided, will be; the benefits of blood product transfusion in BMT patients far outweigh the risks involved. You can get more information about the risks from your doctor.
  2. Allergic reactions: You might feel itchy or get a rash with transfusions. However, these reactions are easily treated with antihistamines and anti-inflammatories. Rarely, allergic reactions may be severe and produce shortness of breath or throat swelling.
  3. Fever, rigors, shakes: A reaction may occur from substances in the donor blood, which may result in a fever. The symptoms may consist of feeling cold or having chills, followed by a rapid rise in body temperature (fever). This response occurs during or shortly after the transfusion has been completed. If required, it can be controlled with simple medications such as acetaminophen or Tylenol. If you have had a history of fever reactions with prior transfusions, you should tell the doctor.
  4. Hemolytic reactions: This rare reaction occurs when antibodies in the patient’s blood react against the donor red cells, destroying them. This is called hemolysis and can result in kidney failure. To ensure that the correct blood is given to prevent this reaction, careful blood testing, processing and administering procedures are required.
  5. Iron Overload: If blood product transfusion is required for an extended period of time, it is possible for the body to accumulate too much iron. This could lead to problems with liver or heart function. Once patients no longer require transfusions, blood may have to be removed from the body as medical therapy to remove excess iron. This procedure is called a phlebotomy. If patients with iron overload are still requiring transfusion, a drug (Desferal) can be prescribed to assist in iron excretion from the body.
  6. Previous reactions: You should let the doctor know if you have had a reaction from blood transfusions in the past, so that steps can be taken to prevent it from recurring.
Cardiac Effects

The chemotherapy agent Daunorubicin and related drugs (called anthacyclines) can damage the heart muscle. The likelihood of this occurring depends on the amount of Daunorubicin given and the presence of underlying heart problems in the patient. If heart damage occurs, it is not usually associated with chest pain but causes difficulty with breathing following exercise or when laying flat, such as when the patient sleeps.

In patients undergoing a blood and marrow transplant, heart complications are rare but damage can occur with the high-dose therapy, particularly when cyclophosphamide or total body irradiation is used.

Management

To monitor for this complication, patients may have one or more heart scans (RVG or MUGA studies) done to measure how well their heart is functioning.

Diarrhea

Your treatment can create changes throughout the bowel that are similar to the changes in the mouth, throat and esophagus. One side effect that commonly occurs as a result of these changes is diarrhea, gas and cramping.

Diarrhea can cause your body to lose fluids and nutrients that can make you feel very weak and dehydrated. It is very important to let your doctor and nurse know if you are having diarrhea. Uncontrolled diarrhea can lead to serious complications such as dehydration.

Like other side effects, the amount and frequency of diarrhea varies from patient to patient. The staff understand that this side effect may be embarrassing for you and they will make every effort to work out a plan that is comfortable for you. This may include dietary suggestions and medications that can help with cramping and decreasing the frequency of diarrhea.

Useful Management Tips

The following tips might be useful if you are having diarrhea:

  • Keep the rectal area clean to prevent skin irritation. A “sitz bath” or soak in warm water should be taken after bowel movements followed by the application of a mild cream to keep the area protected. Your BMT doctor may choose to prescribe a medicated cream for this purpose.
  • Limit foods with caffeine such as coffee, colas, and strong tea. Caffeine can cause your body to lose even more fluid.
  • Dairy products such as milk, cheese and ice-cream may make diarrhea worse. If you feel worse after eating these foods, consult the doctor or dietitian for more information. Lactose-free beverages might be better tolerated.
  • Avoid high fat foods. If you feel worse after eating high fat foods such as deep fried foods, fatty meats, excess butter or margarine, or greasy snack food, then limit the use of these foods.
  • High fibre foods might make diarrhea worse. Ask the dietitian for a list of low fibre foods to try.
  • If you have bloating, cramping or gas then avoiding foods than can increase gas production might help. These include broccoli, cabbage, cauliflower, dried beans and peas, brussel sprouts, onions and carbonated beverages.
Fatigue

“Fatigue” is a common medical condition for people with cancer. For most people, fatigue is a temporary condition that occurs after doing some moderate to heavy activity. It usually goes away after you rest or take a quick nap. However, for cancer patients, fatigue can be chronic (meaning it doesn’t go away), and can severely affect their health and quality of life.

Causes of Fatigue

One of the most common causes of fatigue is chemotherapy treatment. Chemotherapy can lower the number of hemoglobin in your blood. Hemoglobin carry oxygen throughout your body and give you energy. Having fewer hemoglobin means that your body gets “out of breath” when you do something even mildly strenuous. Other factors that can contribute to fatigue are general cancer pain, disruption of eating and sleeping habits which are often due to nausea, pain and/or routine changes.

Signs of Fatigue

Although weakness and exhaustion are obvious indicators of fatigue, you also need to pay attention to some subtler signs.

These less obvious signs include pain in your legs, difficulties climbing stairs or walking short distances, and being short of breath after only light activity, like cooking a meal or taking a shower. Fatigue can affect the way you think and feel. It can cause you to have difficulty in concentrating, lose interest in your normal activities, and make you impatient.

Management

Everyone feels and deals with fatigue differently. Let your health care team know that you are experiencing fatigue. They can provide you with helpful information to improve fatigue, or prescribe treatments and medication to treat physical conditions like anemia.

Here are some helpful tips to assist you in dealing with fatigue:

  • Take several short naps or breaks, rather than one, long rest period.
  • Plan your day so that you have time to rest.
  • Take short walks or do some light exercise if possible. Some people find this decreases their fatigue and helps them sleep better at night.
  • Try easier or short versions of the activities you enjoy.
  • Eat as well as you can, and drink plenty of fluids.
  • Ask your family or friends to help you with tasks you find difficult or taxing.
  • Keep a diary of how you feel each day. This will help you with planning your daily activities, and can help you and your medical team regulate any anti-fatigue medication you may be taking.
  • Join a support group, or seek help from a BMT social worker. Sharing your experience with others can ease the burden of fatigue, and you can learn coping strategies from talking about it.
  • Cultivate less strenuous interests such as listening to music or reading.

Remember that you don’t have to do everything! Save your energy for things you find most important!

Female Sexuality

Sexual Design & Intercourse

Most women experience a temporary decrease in libido (desire). This may be due to tiredness, weakness, a change in how they feel about their appearance, or a general feeling of illness. Remember, sex requires extra energy! It is an individual thing, but it can take several months or more for interest to return.

Radiation and graft-versus-host disease (GVHD) may cause vaginal dryness, vaginal narrowing, inflammation of the vaginal wall, and pain with intercourse. Treatment depends on the cause. Doctors from the Endocrinology and Gynecology teams can advise you about management strategies.

Following treatment, patients may resume sexual relations. Resuming relationships will take patience and time. Communication with your partner is the key. Touching and caressing take much less energy than sexual intercourse and can be just as intimate and satisfying.

Fertility

Chemotherapy and radiation therapy can affect the ovaries, causing temporary or permanent infertility. Infertility is the inability to have children. While it is uncommon, some women do recover their ovulation after chemotherapy for two or more years post-BMT. This should be kept in mind when engaging in unprotected sexual intercourse. For some women, freezing (cryopreservation) of fertilized eggs (ova), called zygotes, may be possible prior to receiving high-dose therapy. Your BMT physician can discuss this in more detail if you wish.

Menstrual Cycle

Women will notice that their menstrual cycle, or period, becomes irregular or stops following chemotherapy or a blood and marrow transplant. If it does not stop, hormone replacement therapy may be started to stop the flow. This decreases the risk of excessive blood loss while your platelet and hemoglobin counts are low. Provera or Ovral are drugs commonly used to stop menstrual flow. Once your counts have recovered enough that blood/platelet transfusions are no longer necessary, these medications can be discontinued. Due to your increased susceptibility to infection, if you do have a period, avoid the use of tampons.

Menopausal Symptoms

After chemotherapy or blood and marrow transplant, menopausal symptoms can occur due to a lack of ovarian hormone production. Hormones are chemicals made by the body that control many different functions of the body. Menopausal symptoms include hot flashes, vaginal dryness, inflammation of the vaginal wall, pain during intercourse, irritability, and decreased libido (desire).

Hormone replacement therapy such as Premarin or Provera may be used to lessen these symptoms and to prevent bones from becoming weak and brittle, leading to osteoporosis. Some women find that using lubricants, gels or other vaginal creams such as K-Y jelly (Vaseline is not recommended) may help to relieve some of the vaginal discomfort. It is important to discuss these issues with your gynecologist or BMT doctor.

It is important to know that many of the symptoms listed here can be treated. If you have any of these symptoms, talk to your doctor. Don’t suffer alone.

Fertility Issues

Chemotherapy and total body irradiation can cause temporary or permanent infertility. Infertility is the inability to have children. Although rare, a few men and women have had children following treatment. It is important for you to discuss contraception issues with your doctor prior to discharge as well as any concerns you have regarding sexuality and fertility.

For Female Patients

Options for female patients include:

  1. Freezing (cryopreservation) of fertilised eggs (ova), called zygotes, may be possible prior to receiving high-dose therapy. Your BMT physician can discuss this in more detail if you wish.
  2. Use of donor eggs and in vitro fertilisation (IVF) in the future

For Male Patients

Sperm banking is a process available that involves freezing and storing sperm in liquid nitrogen. This sperm may be used at a later time for artificial insemination or in vitro fertilisation (IVF). Sperm can be stored in liquid nitrogen for up to ten years. This procedure depends on the sperm count and the quality of the sperm.

The patient’s underlying disease and exposure to chemotherapy or radiation can decrease sperm counts. Patients interested in sperm banking should discuss this with their physician. For some patients, treatment cannot be safely delayed and if the sperm count is low, sperm banking may not be possible. A specimen can sometimes be collected even if the first dose of chemotherapy has been given. Patients should discuss this with their physician if they have concerns or questions.

Sperm Banking – What to Expect

Ideally, three samples of ejaculate are taken. Appointments should be made at least 48 hours apart. Abstaining from intercourse or ejaculation for at least 48 hours before each appointment will produce the best sperm count. Collect the sample by masturbating. Avoid using any lubricants, including saliva, as they can harm the sperm.

The first sample will be examined by the sperm bank laboratory to see whether it should be stored. The semen is checked for amount, motility (the ability to move), and normal cell shape, before freezing and after thawing.

Fertility Clinics

There are sperm banking facilities and fertility clinics in several Canadian cities, including Vancouver. You doctor or social worker can help you contact them.

Graft-Versus-Host-Disease (GVHD)

Graft-versus-host disease or GVHD is a term used to describe a battle between the transplanted stem cells and the patient’s body. This is a complication that occurs when the new stem cells (the graft) reject or see your body (the host) as foreign.

While GVHD is extremely rare in autologous transplants, it occurs in approximately 50% of patients who have an allogeneic (donor) transplant. GVHD is less likely to occur if the donor and recipient are matched – have identical tissue or “HLA” types. The condition is considerably more common when the match is only partial or if the donor and recipient are unrelated. All patients receiving bone marrow from a donor, unless the donor is an identical twin, will receive drugs to try to prevent GVHD.

Of those who develop GVHD, many will experience only minor difficulties. About half will experience significant problems. There are two types of GVHD: acute and chronic.

Acute GVHD

Acute GVHD may occur early when the bone marrow starts to engraft around two to four weeks after the transplant. Acute GVHD may involve three main body systems:

  1. Skin GVHD usually shows up as a rash anywhere on the skin surface but it is mostly seen on the hands, feet, abdomen and face. The skin initially looks sun-burnt. The rash may progress to other areas of the body and potentially become a blister-like rash.
  2. Liver GVHD become evident in your bloodwork. Bloodwork is done regularly to test how your liver is functioning. With liver GVHD, these results become elevated. Liver GVHD may also cause the patient to become jaundiced (to have a yellow tone to the skin).
  3. Gastrointestinal Tract GVHD appears as nausea and vomiting and/or acute, watery or sometimes explosive diarrhea. The amount of diarrhea can indicate the severity of the GVHD. An exam of the gastrointestinal tract is also done to confirm GVHD.

Chronic GVHD

Chronic GVHD occurs after 100 days post-BMT. It may develop as a continuation of acute GVHD or occur without any prior history of acute GVHD. Chronic GVHD is usually less serious. It is most frequently associated with soreness or dryness of the mouth or eyes, lung and liver complications, changes in skin pigmentation. It may also cause hair loss, weight loss, vaginal dryness, cough, shortness of breath and joint problems.

Management

To manage and treat GVHD, a number of drugs such as cyclosporine, methotrexate and prednisone are used early on to help prevent or minimize GVHD. However, some side effects of the drugs can interfere with the patients’ quality of life. Your BMT doctor will discuss these with you in detail.

GVHD is not always a negative development following a blood and bone marrow transplant. This is because the immune system that attacks the host causing GVHD is also known to attack cancer cells. Researchers have found that patients with GVHD generally have a lower risk of having a relapse of their cancer.

Hair Loss

Hair loss, also known as “alopecia”, occurs because the chemotherapy treatment affects the rapidly dividing cells in the hair follicle. As a result, patients will lose most of their body hair. Areas affected will likely include the scalp, face, chest, arms, legs and pubic area.

What to Expect

Hair loss may be a difficult side effect to adjust to. It is a temporary side effect, with some exceptions.  Hair loss usually begins several days to a few weeks after chemotherapy has started.  At this time, most people notice a few more strands of hair on their pillow than usual. Once hair loss has begun, it will continue in a steady process.  Similarly, when regrowth begins, new hair will appear at a gradual, steady rate.  Hair should begin to grow back several weeks to a few months after chemotherapy has ended. It is quite common for the new hair to be a different colour and texture.

Management

Because hair loss is a gradual process, some people decide to cut their hair short or shave their head if they find the loose strands a nuisance. Shampooing, brushing or combing will usually increase the rate of hair loss.

Although hair loss can’t be prevented, there are many options to consider. Many people find that a stretchy cloth cap, scarves, baseball cap, hat, or wig can be helpful during the period of hair loss. Some people arrange to purchase these items prior to coming to the hospital so they will be available when needed. Information about financial support for the purchase of a wig is available from the Canadian Cancer Society. Not everyone chooses to cover temporary baldness. Whatever you choose, it’s important that you decide what feels right for you.

Liver Effects

The liver is responsible for “detoxifying” many of the drugs and chemicals that enter your body. It may become damaged as a result of the chemotherapy drugs used to treat the disease. The small vessels of the liver are very prone to a scarring process that is believed to be started by the high-dose therapy given prior to blood and marrow transplant. This scarring process is known as veno-occlusive disease or VOD.

VOD may occur in up to 50% of BMT patients. VOD shows up as tender, enlarged liver, yellowish discoloration of the skin (jaundice) and weight gain due to fluid retention. Although VOD can potentially be fatal, the liver has a huge capacity to recover from even severe damage.

Lung Effects

In BMT patients, the lung is a common area of infection. In addition, the lung is an organ that can be damaged by drugs or radiation. This is a frequent side effect of the chemotherapy agent Carmustine (BCNU). BCNU is used for Hodgkin’s disease and non-Hodgkin’s lymphoma patients undergoing an autologous blood and marrow transplant. Side effects on the lung may also occur as a result of total body irradiation.

This condition may resemble an infection with cough, fever and shortness of breath, but antibiotics are ineffective. It usually develops several weeks or months following blood and marrow transplant, after the patient has been discharged home from the hospital.

Management

It is critical that you or your local doctor contact your BMT doctor immediately if fever, cough and/or shortness of breath develop after returning home.

If treated early with steroid medication, the condition is curable. However, any delay in starting appropriate therapy may result in a fatal outcome for the patient.

Male Sexuality

Sexual Desire & Intercourse

Chemotherapy agents are not known to directly affect desire, ejaculation or orgasm. For many patients, however, decreased libido (desire) is common, but it is usually temporary. It may be due to tiredness, weakness, a change in how you feel about your appearance, and a general feeling of illness. Remember, sex requires extra energy! It is an individual thing, but it can take several months or more for interest to return.

Due to chemotherapy or radiation therapy, semen may appear brown or orange. This is temporary. Patients receiving chemotherapy should wear a condom during sexual intercourse, for up to seven days after the last dose of chemotherapy as some drug by-products may be present in the ejaculate.

Following treatment, patients may resume sexual relations. Resuming relationships will take patience and time. Communication with your partner is the key. Touching and caressing take much less energy than sexual intercourse and can be just as intimate and satisfying.

Fertility

Chemotherapy, radiation therapy and active disease (cancer or infection) can cause temporary or permanent infertility. Infertility is the inability to have children. Chemotherapy may lower the number of sperm cells, reduce sperm cells’ ability to move or cause other abnormalities.

While it is uncommon, some male patients recover their sperm production after chemotherapy or two or more years post-bone marrow transplant. This should be considered when engaging in unprotected sexual intercourse. For some patients, freezing (cryopreservation) of sperm, also known as sperm banking, before treatment begins may be an option. Talk to your BMT doctor for more information.

Patients should report any concerns to the physician or nurse. Don’t suffer alone.

Nausea & Vomiting

Nausea/vomiting is a very common side effect with chemotherapy.  There are many different things that can trigger nausea such as motion, heartburn, food or other odours, and feeling full after eating. It is important to keep track of these triggers and to tell your doctor or nurse about them. This way, you can get the most effective anti-nausea medication.

Management

Prior to receiving chemotherapy or total body irradiation, you will receive medications that are very effective in minimizing nausea. These medications may be given by mouth, under the tongue, or through your Hickman® line on a regular basis throughout the therapy. Some of the anti-nausea medications cause a feeling of drowsiness and many patients find that they will nap quite frequently during this procedure.

Many different anti-nausea (also called anti-emetic) medications are available to you throughout the course of your treatment.  They can be prescribed for you based on your nausea/vomiting triggers.

What You Can Do

  • Keep your mouth fresh by rinsing before and after meals/snacks.
  • Eat smallmore frequent meals/snacks throughout the day.
  • Take clear fluids such as juice, broth or jello rather than a regular meal prior to chemotherapy or total body irradiation.
  • Avoid spicyfried and greasy foods. Starchy, bland foods are better tolerated. Try saltines, rice cakes, rusks, bread sticks, plain toast, pretzels, bagels, noodles, rice, plain congee, plain roti or digestive cookies.
  • Put some crackers or biscuits by your bedside. Eating a little before you get up in the morning may help.
  • If food odours trigger your nausea, try foods that are cool/cold.  Reduce cooking odours by using a kitchen fan and keeping pots covered.
  • Choose foods based on how they will taste/feel coming back up. For example, soft foods like jello and ice-cream might be easier on your throat compared to a harder texture like chips.
  • Eat whenever your appetite is the best.
  • Learn some relaxation and distraction techniques that work well for you.
  • Wear loose, comfortable clothing.
  • If nausea is severe, rinse a facecloth with very cold water, wring it out and apply to the face and the back of the neck. Continue rinsing with very cold water and applying.
Neurologic Effects

High doses of the chemotherapy agent Cytarabine (“high-dose Ara-C” or “HIDAC”) is given to induce and maintain a complete remission. This is a very effective drug in Acute Myelogenous Leukemia (AML) but it can cause difficulties with the part of the brain, namely the cerebellum, that is responsible for co-ordination. This is particularly observed in patients over the age of 60. This side effect is usually, but not always, temporary. Patients on high-dose Cytosine Arabinoside will have their handwriting monitored as a screening test for cerebella dysfunction.

Patients who receive the chemotherapy agent Vincristine may experience numbness and tingling in the fingers and toes. This is called peripheral neuropathy. This is also usually temporary. If symptoms are severe or if the patient develops significant weakness of the hands and feet, Vincristine is discontinued.

In bone marrow transplant patients, high-doses of the chemotherapy agent Busulfan may cause seizures. Therefore, an anti-epilepsy medication, Dilantin, is given for one week prior to a bone marrow transplant to reduce the risk of seizure in patients receiving Busulfan.

Relapse

Unfortunately, patients having had chemotherapy or a blood and marrow transplant may still have a recurrence of their underlying disease, despite the treatment. This usually occurs within the first two years after chemotherapy or the blood and marrow transplant but, occasionally, occurs many years later.

It is important to realize that a blood and marrow transplant does not always cure patients with cancer. A second BMT is rarely beneficial for patients that have relapsed. However, further chemotherapy or radiation may be helpful although not curative.

In certain situations, a boost of immune cells from the original donor’s blood may be extremely effective in controlling recurrent cancer in a patient. This procedure is known as a Donor Leukocyte Infusion (DLI).

Skin Rashes

Some skin changes that can occur during and after chemoradiotherapy include dryness, peeling, colour changes, rashes and itchiness. Some of these changes, such as redness, are common with total body irradiation, and disappear quite quickly. Others, such as rashes, can come and go throughout the treatment. About two to three weeks after receiving total body irradiation, a bronze, sun-tanned appearance can develop and may last for several months. This temporary darkening of the skin is also quite common in bone marrow transplant patients that have received busulfan.

Management

It is difficult to provide specific information about skin reactions because there is a variety of possible reactions and many causes. Your physician and nurses will provide you with more detailed information. However, here are some general guidelines.

  • Keep the skin clean and moist. Mild moisturisers are helpful, but avoid perfumed soaps and toiletries.
  • If you receive total body irradiation, you should sponge bath with tepid water only and avoid the use of soap, moisturisers, and other toiletries during treatments and for several days after receiving radiation.
  • When you are discharged from hospital, minimise exposure to the sun. Following a transplant, patients may be more sensitive to the sun. Exposure to direct sunlight or damaging ultraviolet rays, even on cloudy days, could cause a flare up of skin problems. This may be prevented by avoiding direct sunlight, wearing a wide-brimmed hat and long sleeved clothing, and always wearing a sunscreen lotion of SPF 15 or higher on exposed skin.
Sore Mouth & Throat (Mucositis)

Chemotherapy and/or infections can lead to a condition called mucositis. Mucositis is an inflammation of the lining of your digestive tract and can lead to discomfort in the mouth, throat and the passage to the stomach (esophagus).

Mucositis may last for several days and will usually get better around the time your blood cell counts begin to recover. Common side effects include dryness, redness, sensitivity, sores, ulcers, and taste changes.

Management

The soreness in your mouth and throat can make it very difficult to eat. Here are some tips:

  • Inform the doctor/nurse if you develop sores in your mouth.  Medications are available to help you with the pain and the sores.
  • A regular mouth care routine will help minimize the discomfort. You will receive instructions on mouth care from the nurse and staff from the Dentistry Department. Click here to go to Patient Education > Mouth Care.
  • Drink lots of fluids to help minimize mouth dryness. If your mouth is sore, cool or room temperature drinks are often more soothing than hot ones. Try diluted sport drinks, diluted juice and flat sodas instead of plain water.
  • Avoid spicy or acidic drinks such as grapefruit or orange juice if your mouth is sore. Instead, stick to bland foods and juices such as apple or grape.
  • Choose foods that are soft, moist and easy to chew and swallow, such as ice cream, popsicles, smoothies, high protein/calorie drinks, pudding, etc.
  • If you have a mumps-like parotid gland swelling (in the side of the neck) after total body irradiation, you may find that applying ice packs to the throat will help. It may be necessary for your BMT doctor to prescribe an analgesic until the swelling goes away. The swelling usually goes away within 12-24 hours.
Taste Effects

Many patients undergoing treatment find that specific foods taste different. This may result from damage to the cells in your mouth that help to detect taste. Taste changes (dysgeusia) may also occur if there is decreased production of saliva in the mouth, causing a dry mouth (xerostomia).

Management

Taste changes are different for every person. Individual taste may change even daily and may last for several weeks. Coping with taste changes can be very challenging. Here are some tips:

  1. Keep trying different foods and you might find a new favourite. Keep a list of foods that taste good to you.
  2. Eat foods that taste good even if it means eating the same foods over and over again. Ask the dietitian for some help to make sure you are getting all the proper nutrients you need.
  3. Try eating foods at cold or at room temperature.
  4. If food/meat tastes metallic, try marinating meat to hide the taste, using plastic utensils instead of metal, using glassware instead of metallic cookware, eating other protein rich foods instead of meat such as milk, canned fish, quiche, cottage cheese, milkshakes, puddings, custard, yogurt, cheese, deviled eggs, and cold sliced meat.
  5. If food tastes too sweet, mix juice/high protein high calorie supplement drinks with water or milk, or add a pinch of salt to decrease the sweetness.
  6. Good mouth care may help with taste changes; rinse your mouth throughout the day especially before and after meals, brush your teeth and tongue with a soft toothbrush.
  7. For dry mouth, try the following foods to help stimulate your own saliva: lemonade, orange juice, cranberry juice, sugar free citrus candies, pickles, and plain yogurt. Avoid these foods if you have a sore mouth or throat.
Bladder Effects (Hemorrhagic Cystitis)

The urinary tract is a common area for infection in the general population as well as BMT patients. However, in BMT patients bladder inflammation caused by the use of cyclophosphamide prior to most transplants can often occur. This can resemble a urinary tract infection with symptoms including burning and frequent urination as well as visible blood or blood clots in the urine. This complication is called hemorrhagic cystitis.

Management

To prevent this, large volumes of IV fluids are given while you receive cyclophosphamide in order to flush out the bladder. You are also encouraged to urinate as soon as you get the urge in order to prevent the drug from sitting in the bladder for too long.

Bleeding & Transfusion

Bleeding as a Side Effect

Patients receiving chemotherapy or having a bone marrow transplant will have a period of time when their platelet count is low. Platelets are responsible for promoting clotting of the blood, and when they are low, patients are prone to bleeding (hemorrhage).

Patients with low platelet counts may also experience excessive bruising, but this is not generally a serious complication. On the other hand, when bleeding occurs from the gastrointestinal tract or into the lungs or brain, this can be life-threatening.

Management

The risk of serious hemorrhage is minimised by transfusion of platelets when the platelet count is less than 10. In situations where patients are already bleeding or have a high fever, platelet counts are usually kept at an even higher level.

Transfusion Risks, Side Effects & Management

Everything possible is done to reduce the risks associated with blood transfusions; however, you should be aware of the possible risks:

  1. Viral infections: Although blood products are rigorously tested and screened for viruses before being released by the Canadian Blood Services, it is possible that viruses may be transmitted to a patient through a transfusion. The risk of this is exceedingly low. While any blood transfusion that can be avoided, will be; the benefits of blood product transfusion in BMT patients far outweigh the risks involved. You can get more information about the risks from your doctor.
  2. Allergic reactions: You might feel itchy or get a rash with transfusions. However, these reactions are easily treated with antihistamines and anti-inflammatories. Rarely, allergic reactions may be severe and produce shortness of breath or throat swelling.
  3. Fever, rigors, shakes: A reaction may occur from substances in the donor blood, which may result in a fever. The symptoms may consist of feeling cold or having chills, followed by a rapid rise in body temperature (fever). This response occurs during or shortly after the transfusion has been completed. If required, it can be controlled with simple medications such as acetaminophen or Tylenol. If you have had a history of fever reactions with prior transfusions, you should tell the doctor.
  4. Hemolytic reactions: This rare reaction occurs when antibodies in the patient’s blood react against the donor red cells, destroying them. This is called hemolysis and can result in kidney failure. To ensure that the correct blood is given to prevent this reaction, careful blood testing, processing and administering procedures are required.
  5. Iron Overload: If blood product transfusion is required for an extended period of time, it is possible for the body to accumulate too much iron. This could lead to problems with liver or heart function. Once patients no longer require transfusions, blood may have to be removed from the body as medical therapy to remove excess iron. This procedure is called a phlebotomy. If patients with iron overload are still requiring transfusion, a drug (Desferal) can be prescribed to assist in iron excretion from the body.
  6. Previous reactions: You should let the doctor know if you have had a reaction from blood transfusions in the past, so that steps can be taken to prevent it from recurring.
Cardiac Effects

The chemotherapy agent Daunorubicin and related drugs (called anthacyclines) can damage the heart muscle. The likelihood of this occurring depends on the amount of Daunorubicin given and the presence of underlying heart problems in the patient. If heart damage occurs, it is not usually associated with chest pain but causes difficulty with breathing following exercise or when laying flat, such as when the patient sleeps.

In patients undergoing a blood and marrow transplant, heart complications are rare but damage can occur with the high-dose therapy, particularly when cyclophosphamide or total body irradiation is used.

Management

To monitor for this complication, patients may have one or more heart scans (RVG or MUGA studies) done to measure how well their heart is functioning.

Diarrhea

Your treatment can create changes throughout the bowel that are similar to the changes in the mouth, throat and esophagus. One side effect that commonly occurs as a result of these changes is diarrhea, gas and cramping.

Diarrhea can cause your body to lose fluids and nutrients that can make you feel very weak and dehydrated. It is very important to let your doctor and nurse know if you are having diarrhea. Uncontrolled diarrhea can lead to serious complications such as dehydration.

Like other side effects, the amount and frequency of diarrhea varies from patient to patient. The staff understand that this side effect may be embarrassing for you and they will make every effort to work out a plan that is comfortable for you. This may include dietary suggestions and medications that can help with cramping and decreasing the frequency of diarrhea.

Useful Management Tips

The following tips might be useful if you are having diarrhea:

  • Keep the rectal area clean to prevent skin irritation. A “sitz bath” or soak in warm water should be taken after bowel movements followed by the application of a mild cream to keep the area protected. Your BMT doctor may choose to prescribe a medicated cream for this purpose.
  • Limit foods with caffeine such as coffee, colas, and strong tea. Caffeine can cause your body to lose even more fluid.
  • Dairy products such as milk, cheese and ice-cream may make diarrhea worse. If you feel worse after eating these foods, consult the doctor or dietitian for more information. Lactose-free beverages might be better tolerated.
  • Avoid high fat foods. If you feel worse after eating high fat foods such as deep fried foods, fatty meats, excess butter or margarine, or greasy snack food, then limit the use of these foods.
  • High fibre foods might make diarrhea worse. Ask the dietitian for a list of low fibre foods to try.
  • If you have bloating, cramping or gas then avoiding foods than can increase gas production might help. These include broccoli, cabbage, cauliflower, dried beans and peas, brussel sprouts, onions and carbonated beverages.
Fatigue

“Fatigue” is a common medical condition for people with cancer. For most people, fatigue is a temporary condition that occurs after doing some moderate to heavy activity. It usually goes away after you rest or take a quick nap. However, for cancer patients, fatigue can be chronic (meaning it doesn’t go away), and can severely affect their health and quality of life.

Causes of Fatigue

One of the most common causes of fatigue is chemotherapy treatment. Chemotherapy can lower the number of hemoglobin in your blood. Hemoglobin carry oxygen throughout your body and give you energy. Having fewer hemoglobin means that your body gets “out of breath” when you do something even mildly strenuous. Other factors that can contribute to fatigue are general cancer pain, disruption of eating and sleeping habits which are often due to nausea, pain and/or routine changes.

Signs of Fatigue

Although weakness and exhaustion are obvious indicators of fatigue, you also need to pay attention to some subtler signs.

These less obvious signs include pain in your legs, difficulties climbing stairs or walking short distances, and being short of breath after only light activity, like cooking a meal or taking a shower. Fatigue can affect the way you think and feel. It can cause you to have difficulty in concentrating, lose interest in your normal activities, and make you impatient.

Management

Everyone feels and deals with fatigue differently. Let your health care team know that you are experiencing fatigue. They can provide you with helpful information to improve fatigue, or prescribe treatments and medication to treat physical conditions like anemia.

Here are some helpful tips to assist you in dealing with fatigue:

  • Take several short naps or breaks, rather than one, long rest period.
  • Plan your day so that you have time to rest.
  • Take short walks or do some light exercise if possible. Some people find this decreases their fatigue and helps them sleep better at night.
  • Try easier or short versions of the activities you enjoy.
  • Eat as well as you can, and drink plenty of fluids.
  • Ask your family or friends to help you with tasks you find difficult or taxing.
  • Keep a diary of how you feel each day. This will help you with planning your daily activities, and can help you and your medical team regulate any anti-fatigue medication you may be taking.
  • Join a support group, or seek help from a BMT social worker. Sharing your experience with others can ease the burden of fatigue, and you can learn coping strategies from talking about it.
  • Cultivate less strenuous interests such as listening to music or reading.

Remember that you don’t have to do everything! Save your energy for things you find most important!

Female Sexuality

Sexual Design & Intercourse

Most women experience a temporary decrease in libido (desire). This may be due to tiredness, weakness, a change in how they feel about their appearance, or a general feeling of illness. Remember, sex requires extra energy! It is an individual thing, but it can take several months or more for interest to return.

Radiation and graft-versus-host disease (GVHD) may cause vaginal dryness, vaginal narrowing, inflammation of the vaginal wall, and pain with intercourse. Treatment depends on the cause. Doctors from the Endocrinology and Gynecology teams can advise you about management strategies.

Following treatment, patients may resume sexual relations. Resuming relationships will take patience and time. Communication with your partner is the key. Touching and caressing take much less energy than sexual intercourse and can be just as intimate and satisfying.

Fertility

Chemotherapy and radiation therapy can affect the ovaries, causing temporary or permanent infertility. Infertility is the inability to have children. While it is uncommon, some women do recover their ovulation after chemotherapy for two or more years post-BMT. This should be kept in mind when engaging in unprotected sexual intercourse. For some women, freezing (cryopreservation) of fertilized eggs (ova), called zygotes, may be possible prior to receiving high-dose therapy. Your BMT physician can discuss this in more detail if you wish.

Menstrual Cycle

Women will notice that their menstrual cycle, or period, becomes irregular or stops following chemotherapy or a blood and marrow transplant. If it does not stop, hormone replacement therapy may be started to stop the flow. This decreases the risk of excessive blood loss while your platelet and hemoglobin counts are low. Provera or Ovral are drugs commonly used to stop menstrual flow. Once your counts have recovered enough that blood/platelet transfusions are no longer necessary, these medications can be discontinued. Due to your increased susceptibility to infection, if you do have a period, avoid the use of tampons.

Menopausal Symptoms

After chemotherapy or blood and marrow transplant, menopausal symptoms can occur due to a lack of ovarian hormone production. Hormones are chemicals made by the body that control many different functions of the body. Menopausal symptoms include hot flashes, vaginal dryness, inflammation of the vaginal wall, pain during intercourse, irritability, and decreased libido (desire).

Hormone replacement therapy such as Premarin or Provera may be used to lessen these symptoms and to prevent bones from becoming weak and brittle, leading to osteoporosis. Some women find that using lubricants, gels or other vaginal creams such as K-Y jelly (Vaseline is not recommended) may help to relieve some of the vaginal discomfort. It is important to discuss these issues with your gynecologist or BMT doctor.

It is important to know that many of the symptoms listed here can be treated. If you have any of these symptoms, talk to your doctor. Don’t suffer alone.

Fertility Issues

Chemotherapy and total body irradiation can cause temporary or permanent infertility. Infertility is the inability to have children. Although rare, a few men and women have had children following treatment. It is important for you to discuss contraception issues with your doctor prior to discharge as well as any concerns you have regarding sexuality and fertility.

For Female Patients

Options for female patients include:

  1. Freezing (cryopreservation) of fertilised eggs (ova), called zygotes, may be possible prior to receiving high-dose therapy. Your BMT physician can discuss this in more detail if you wish.
  2. Use of donor eggs and in vitro fertilisation (IVF) in the future

For Male Patients

Sperm banking is a process available that involves freezing and storing sperm in liquid nitrogen. This sperm may be used at a later time for artificial insemination or in vitro fertilisation (IVF). Sperm can be stored in liquid nitrogen for up to ten years. This procedure depends on the sperm count and the quality of the sperm.

The patient’s underlying disease and exposure to chemotherapy or radiation can decrease sperm counts. Patients interested in sperm banking should discuss this with their physician. For some patients, treatment cannot be safely delayed and if the sperm count is low, sperm banking may not be possible. A specimen can sometimes be collected even if the first dose of chemotherapy has been given. Patients should discuss this with their physician if they have concerns or questions.

Sperm Banking – What to Expect

Ideally, three samples of ejaculate are taken. Appointments should be made at least 48 hours apart. Abstaining from intercourse or ejaculation for at least 48 hours before each appointment will produce the best sperm count. Collect the sample by masturbating. Avoid using any lubricants, including saliva, as they can harm the sperm.

The first sample will be examined by the sperm bank laboratory to see whether it should be stored. The semen is checked for amount, motility (the ability to move), and normal cell shape, before freezing and after thawing.

Fertility Clinics

There are sperm banking facilities and fertility clinics in several Canadian cities, including Vancouver. You doctor or social worker can help you contact them.

Graft-Versus-Host-Disease (GVHD)

Graft-versus-host disease or GVHD is a term used to describe a battle between the transplanted stem cells and the patient’s body. This is a complication that occurs when the new stem cells (the graft) reject or see your body (the host) as foreign.

While GVHD is extremely rare in autologous transplants, it occurs in approximately 50% of patients who have an allogeneic (donor) transplant. GVHD is less likely to occur if the donor and recipient are matched – have identical tissue or “HLA” types. The condition is considerably more common when the match is only partial or if the donor and recipient are unrelated. All patients receiving bone marrow from a donor, unless the donor is an identical twin, will receive drugs to try to prevent GVHD.

Of those who develop GVHD, many will experience only minor difficulties. About half will experience significant problems. There are two types of GVHD: acute and chronic.

Acute GVHD

Acute GVHD may occur early when the bone marrow starts to engraft around two to four weeks after the transplant. Acute GVHD may involve three main body systems:

  1. Skin GVHD usually shows up as a rash anywhere on the skin surface but it is mostly seen on the hands, feet, abdomen and face. The skin initially looks sun-burnt. The rash may progress to other areas of the body and potentially become a blister-like rash.
  2. Liver GVHD become evident in your bloodwork. Bloodwork is done regularly to test how your liver is functioning. With liver GVHD, these results become elevated. Liver GVHD may also cause the patient to become jaundiced (to have a yellow tone to the skin).
  3. Gastrointestinal Tract GVHD appears as nausea and vomiting and/or acute, watery or sometimes explosive diarrhea. The amount of diarrhea can indicate the severity of the GVHD. An exam of the gastrointestinal tract is also done to confirm GVHD.

Chronic GVHD

Chronic GVHD occurs after 100 days post-BMT. It may develop as a continuation of acute GVHD or occur without any prior history of acute GVHD. Chronic GVHD is usually less serious. It is most frequently associated with soreness or dryness of the mouth or eyes, lung and liver complications, changes in skin pigmentation. It may also cause hair loss, weight loss, vaginal dryness, cough, shortness of breath and joint problems.

Management

To manage and treat GVHD, a number of drugs such as cyclosporine, methotrexate and prednisone are used early on to help prevent or minimize GVHD. However, some side effects of the drugs can interfere with the patients’ quality of life. Your BMT doctor will discuss these with you in detail.

GVHD is not always a negative development following a blood and bone marrow transplant. This is because the immune system that attacks the host causing GVHD is also known to attack cancer cells. Researchers have found that patients with GVHD generally have a lower risk of having a relapse of their cancer.

Hair Loss

Hair loss, also known as “alopecia”, occurs because the chemotherapy treatment affects the rapidly dividing cells in the hair follicle. As a result, patients will lose most of their body hair. Areas affected will likely include the scalp, face, chest, arms, legs and pubic area.

What to Expect

Hair loss may be a difficult side effect to adjust to. It is a temporary side effect, with some exceptions.  Hair loss usually begins several days to a few weeks after chemotherapy has started.  At this time, most people notice a few more strands of hair on their pillow than usual. Once hair loss has begun, it will continue in a steady process.  Similarly, when regrowth begins, new hair will appear at a gradual, steady rate.  Hair should begin to grow back several weeks to a few months after chemotherapy has ended. It is quite common for the new hair to be a different colour and texture.

Management

Because hair loss is a gradual process, some people decide to cut their hair short or shave their head if they find the loose strands a nuisance. Shampooing, brushing or combing will usually increase the rate of hair loss.

Although hair loss can’t be prevented, there are many options to consider. Many people find that a stretchy cloth cap, scarves, baseball cap, hat, or wig can be helpful during the period of hair loss. Some people arrange to purchase these items prior to coming to the hospital so they will be available when needed. Information about financial support for the purchase of a wig is available from the Canadian Cancer Society. Not everyone chooses to cover temporary baldness. Whatever you choose, it’s important that you decide what feels right for you.

Liver Effects

The liver is responsible for “detoxifying” many of the drugs and chemicals that enter your body. It may become damaged as a result of the chemotherapy drugs used to treat the disease. The small vessels of the liver are very prone to a scarring process that is believed to be started by the high-dose therapy given prior to blood and marrow transplant. This scarring process is known as veno-occlusive disease or VOD.

VOD may occur in up to 50% of BMT patients. VOD shows up as tender, enlarged liver, yellowish discoloration of the skin (jaundice) and weight gain due to fluid retention. Although VOD can potentially be fatal, the liver has a huge capacity to recover from even severe damage.

Lung Effects

In BMT patients, the lung is a common area of infection. In addition, the lung is an organ that can be damaged by drugs or radiation. This is a frequent side effect of the chemotherapy agent Carmustine (BCNU). BCNU is used for Hodgkin’s disease and non-Hodgkin’s lymphoma patients undergoing an autologous blood and marrow transplant. Side effects on the lung may also occur as a result of total body irradiation.

This condition may resemble an infection with cough, fever and shortness of breath, but antibiotics are ineffective. It usually develops several weeks or months following blood and marrow transplant, after the patient has been discharged home from the hospital.

Management

It is critical that you or your local doctor contact your BMT doctor immediately if fever, cough and/or shortness of breath develop after returning home.

If treated early with steroid medication, the condition is curable. However, any delay in starting appropriate therapy may result in a fatal outcome for the patient.

Male Sexuality

Sexual Desire & Intercourse

Chemotherapy agents are not known to directly affect desire, ejaculation or orgasm. For many patients, however, decreased libido (desire) is common, but it is usually temporary. It may be due to tiredness, weakness, a change in how you feel about your appearance, and a general feeling of illness. Remember, sex requires extra energy! It is an individual thing, but it can take several months or more for interest to return.

Due to chemotherapy or radiation therapy, semen may appear brown or orange. This is temporary. Patients receiving chemotherapy should wear a condom during sexual intercourse, for up to seven days after the last dose of chemotherapy as some drug by-products may be present in the ejaculate.

Following treatment, patients may resume sexual relations. Resuming relationships will take patience and time. Communication with your partner is the key. Touching and caressing take much less energy than sexual intercourse and can be just as intimate and satisfying.

Fertility

Chemotherapy, radiation therapy and active disease (cancer or infection) can cause temporary or permanent infertility. Infertility is the inability to have children. Chemotherapy may lower the number of sperm cells, reduce sperm cells’ ability to move or cause other abnormalities.

While it is uncommon, some male patients recover their sperm production after chemotherapy or two or more years post-bone marrow transplant. This should be considered when engaging in unprotected sexual intercourse. For some patients, freezing (cryopreservation) of sperm, also known as sperm banking, before treatment begins may be an option. Talk to your BMT doctor for more information.

Patients should report any concerns to the physician or nurse. Don’t suffer alone.

Nausea & Vomiting

Nausea/vomiting is a very common side effect with chemotherapy.  There are many different things that can trigger nausea such as motion, heartburn, food or other odours, and feeling full after eating. It is important to keep track of these triggers and to tell your doctor or nurse about them. This way, you can get the most effective anti-nausea medication.

Management

Prior to receiving chemotherapy or total body irradiation, you will receive medications that are very effective in minimizing nausea. These medications may be given by mouth, under the tongue, or through your Hickman® line on a regular basis throughout the therapy. Some of the anti-nausea medications cause a feeling of drowsiness and many patients find that they will nap quite frequently during this procedure.

Many different anti-nausea (also called anti-emetic) medications are available to you throughout the course of your treatment.  They can be prescribed for you based on your nausea/vomiting triggers.

What You Can Do

  • Keep your mouth fresh by rinsing before and after meals/snacks.
  • Eat smallmore frequent meals/snacks throughout the day.
  • Take clear fluids such as juice, broth or jello rather than a regular meal prior to chemotherapy or total body irradiation.
  • Avoid spicyfried and greasy foods. Starchy, bland foods are better tolerated. Try saltines, rice cakes, rusks, bread sticks, plain toast, pretzels, bagels, noodles, rice, plain congee, plain roti or digestive cookies.
  • Put some crackers or biscuits by your bedside. Eating a little before you get up in the morning may help.
  • If food odours trigger your nausea, try foods that are cool/cold.  Reduce cooking odours by using a kitchen fan and keeping pots covered.
  • Choose foods based on how they will taste/feel coming back up. For example, soft foods like jello and ice-cream might be easier on your throat compared to a harder texture like chips.
  • Eat whenever your appetite is the best.
  • Learn some relaxation and distraction techniques that work well for you.
  • Wear loose, comfortable clothing.
  • If nausea is severe, rinse a facecloth with very cold water, wring it out and apply to the face and the back of the neck. Continue rinsing with very cold water and applying.
Neurologic Effects

High doses of the chemotherapy agent Cytarabine (“high-dose Ara-C” or “HIDAC”) is given to induce and maintain a complete remission. This is a very effective drug in Acute Myelogenous Leukemia (AML) but it can cause difficulties with the part of the brain, namely the cerebellum, that is responsible for co-ordination. This is particularly observed in patients over the age of 60. This side effect is usually, but not always, temporary. Patients on high-dose Cytosine Arabinoside will have their handwriting monitored as a screening test for cerebella dysfunction.

Patients who receive the chemotherapy agent Vincristine may experience numbness and tingling in the fingers and toes. This is called peripheral neuropathy. This is also usually temporary. If symptoms are severe or if the patient develops significant weakness of the hands and feet, Vincristine is discontinued.

In bone marrow transplant patients, high-doses of the chemotherapy agent Busulfan may cause seizures. Therefore, an anti-epilepsy medication, Dilantin, is given for one week prior to a bone marrow transplant to reduce the risk of seizure in patients receiving Busulfan.

Relapse

Unfortunately, patients having had chemotherapy or a blood and marrow transplant may still have a recurrence of their underlying disease, despite the treatment. This usually occurs within the first two years after chemotherapy or the blood and marrow transplant but, occasionally, occurs many years later.

It is important to realize that a blood and marrow transplant does not always cure patients with cancer. A second BMT is rarely beneficial for patients that have relapsed. However, further chemotherapy or radiation may be helpful although not curative.

In certain situations, a boost of immune cells from the original donor’s blood may be extremely effective in controlling recurrent cancer in a patient. This procedure is known as a Donor Leukocyte Infusion (DLI).

Skin Rashes

Some skin changes that can occur during and after chemoradiotherapy include dryness, peeling, colour changes, rashes and itchiness. Some of these changes, such as redness, are common with total body irradiation, and disappear quite quickly. Others, such as rashes, can come and go throughout the treatment. About two to three weeks after receiving total body irradiation, a bronze, sun-tanned appearance can develop and may last for several months. This temporary darkening of the skin is also quite common in bone marrow transplant patients that have received busulfan.

Management

It is difficult to provide specific information about skin reactions because there is a variety of possible reactions and many causes. Your physician and nurses will provide you with more detailed information. However, here are some general guidelines.

  • Keep the skin clean and moist. Mild moisturisers are helpful, but avoid perfumed soaps and toiletries.
  • If you receive total body irradiation, you should sponge bath with tepid water only and avoid the use of soap, moisturisers, and other toiletries during treatments and for several days after receiving radiation.
  • When you are discharged from hospital, minimise exposure to the sun. Following a transplant, patients may be more sensitive to the sun. Exposure to direct sunlight or damaging ultraviolet rays, even on cloudy days, could cause a flare up of skin problems. This may be prevented by avoiding direct sunlight, wearing a wide-brimmed hat and long sleeved clothing, and always wearing a sunscreen lotion of SPF 15 or higher on exposed skin.
Sore Mouth & Throat (Mucositis)

Chemotherapy and/or infections can lead to a condition called mucositis. Mucositis is an inflammation of the lining of your digestive tract and can lead to discomfort in the mouth, throat and the passage to the stomach (esophagus).

Mucositis may last for several days and will usually get better around the time your blood cell counts begin to recover. Common side effects include dryness, redness, sensitivity, sores, ulcers, and taste changes.

Management

The soreness in your mouth and throat can make it very difficult to eat. Here are some tips:

  • Inform the doctor/nurse if you develop sores in your mouth.  Medications are available to help you with the pain and the sores.
  • A regular mouth care routine will help minimize the discomfort. You will receive instructions on mouth care from the nurse and staff from the Dentistry Department. Click here to go to Patient Education > Mouth Care.
  • Drink lots of fluids to help minimize mouth dryness. If your mouth is sore, cool or room temperature drinks are often more soothing than hot ones. Try diluted sport drinks, diluted juice and flat sodas instead of plain water.
  • Avoid spicy or acidic drinks such as grapefruit or orange juice if your mouth is sore. Instead, stick to bland foods and juices such as apple or grape.
  • Choose foods that are soft, moist and easy to chew and swallow, such as ice cream, popsicles, smoothies, high protein/calorie drinks, pudding, etc.
  • If you have a mumps-like parotid gland swelling (in the side of the neck) after total body irradiation, you may find that applying ice packs to the throat will help. It may be necessary for your BMT doctor to prescribe an analgesic until the swelling goes away. The swelling usually goes away within 12-24 hours.
Taste Effects

Many patients undergoing treatment find that specific foods taste different. This may result from damage to the cells in your mouth that help to detect taste. Taste changes (dysgeusia) may also occur if there is decreased production of saliva in the mouth, causing a dry mouth (xerostomia).

Management

Taste changes are different for every person. Individual taste may change even daily and may last for several weeks. Coping with taste changes can be very challenging. Here are some tips:

  1. Keep trying different foods and you might find a new favourite. Keep a list of foods that taste good to you.
  2. Eat foods that taste good even if it means eating the same foods over and over again. Ask the dietitian for some help to make sure you are getting all the proper nutrients you need.
  3. Try eating foods at cold or at room temperature.
  4. If food/meat tastes metallic, try marinating meat to hide the taste, using plastic utensils instead of metal, using glassware instead of metallic cookware, eating other protein rich foods instead of meat such as milk, canned fish, quiche, cottage cheese, milkshakes, puddings, custard, yogurt, cheese, deviled eggs, and cold sliced meat.
  5. If food tastes too sweet, mix juice/high protein high calorie supplement drinks with water or milk, or add a pinch of salt to decrease the sweetness.
  6. Good mouth care may help with taste changes; rinse your mouth throughout the day especially before and after meals, brush your teeth and tongue with a soft toothbrush.
  7. For dry mouth, try the following foods to help stimulate your own saliva: lemonade, orange juice, cranberry juice, sugar free citrus candies, pickles, and plain yogurt. Avoid these foods if you have a sore mouth or throat.
Bladder Effects (Hemorrhagic Cystitis)

The urinary tract is a common area for infection in the general population as well as BMT patients. However, in BMT patients bladder inflammation caused by the use of cyclophosphamide prior to most transplants can often occur. This can resemble a urinary tract infection with symptoms including burning and frequent urination as well as visible blood or blood clots in the urine. This complication is called hemorrhagic cystitis.

Management

To prevent this, large volumes of IV fluids are given while you receive cyclophosphamide in order to flush out the bladder. You are also encouraged to urinate as soon as you get the urge in order to prevent the drug from sitting in the bladder for too long.

Bleeding & Transfusion

Bleeding as a Side Effect

Patients receiving chemotherapy or having a bone marrow transplant will have a period of time when their platelet count is low. Platelets are responsible for promoting clotting of the blood, and when they are low, patients are prone to bleeding (hemorrhage).

Patients with low platelet counts may also experience excessive bruising, but this is not generally a serious complication. On the other hand, when bleeding occurs from the gastrointestinal tract or into the lungs or brain, this can be life-threatening.

Management

The risk of serious hemorrhage is minimised by transfusion of platelets when the platelet count is less than 10. In situations where patients are already bleeding or have a high fever, platelet counts are usually kept at an even higher level.

Transfusion Risks, Side Effects & Management

Everything possible is done to reduce the risks associated with blood transfusions; however, you should be aware of the possible risks:

  1. Viral infections: Although blood products are rigorously tested and screened for viruses before being released by the Canadian Blood Services, it is possible that viruses may be transmitted to a patient through a transfusion. The risk of this is exceedingly low. While any blood transfusion that can be avoided, will be; the benefits of blood product transfusion in BMT patients far outweigh the risks involved. You can get more information about the risks from your doctor.
  2. Allergic reactions: You might feel itchy or get a rash with transfusions. However, these reactions are easily treated with antihistamines and anti-inflammatories. Rarely, allergic reactions may be severe and produce shortness of breath or throat swelling.
  3. Fever, rigors, shakes: A reaction may occur from substances in the donor blood, which may result in a fever. The symptoms may consist of feeling cold or having chills, followed by a rapid rise in body temperature (fever). This response occurs during or shortly after the transfusion has been completed. If required, it can be controlled with simple medications such as acetaminophen or Tylenol. If you have had a history of fever reactions with prior transfusions, you should tell the doctor.
  4. Hemolytic reactions: This rare reaction occurs when antibodies in the patient’s blood react against the donor red cells, destroying them. This is called hemolysis and can result in kidney failure. To ensure that the correct blood is given to prevent this reaction, careful blood testing, processing and administering procedures are required.
  5. Iron Overload: If blood product transfusion is required for an extended period of time, it is possible for the body to accumulate too much iron. This could lead to problems with liver or heart function. Once patients no longer require transfusions, blood may have to be removed from the body as medical therapy to remove excess iron. This procedure is called a phlebotomy. If patients with iron overload are still requiring transfusion, a drug (Desferal) can be prescribed to assist in iron excretion from the body.
  6. Previous reactions: You should let the doctor know if you have had a reaction from blood transfusions in the past, so that steps can be taken to prevent it from recurring.
Cardiac Effects

The chemotherapy agent Daunorubicin and related drugs (called anthacyclines) can damage the heart muscle. The likelihood of this occurring depends on the amount of Daunorubicin given and the presence of underlying heart problems in the patient. If heart damage occurs, it is not usually associated with chest pain but causes difficulty with breathing following exercise or when laying flat, such as when the patient sleeps.

In patients undergoing a blood and marrow transplant, heart complications are rare but damage can occur with the high-dose therapy, particularly when cyclophosphamide or total body irradiation is used.

Management

To monitor for this complication, patients may have one or more heart scans (RVG or MUGA studies) done to measure how well their heart is functioning.

Diarrhea

Your treatment can create changes throughout the bowel that are similar to the changes in the mouth, throat and esophagus. One side effect that commonly occurs as a result of these changes is diarrhea, gas and cramping.

Diarrhea can cause your body to lose fluids and nutrients that can make you feel very weak and dehydrated. It is very important to let your doctor and nurse know if you are having diarrhea. Uncontrolled diarrhea can lead to serious complications such as dehydration.

Like other side effects, the amount and frequency of diarrhea varies from patient to patient. The staff understand that this side effect may be embarrassing for you and they will make every effort to work out a plan that is comfortable for you. This may include dietary suggestions and medications that can help with cramping and decreasing the frequency of diarrhea.

Useful Management Tips

The following tips might be useful if you are having diarrhea:

  • Keep the rectal area clean to prevent skin irritation. A “sitz bath” or soak in warm water should be taken after bowel movements followed by the application of a mild cream to keep the area protected. Your BMT doctor may choose to prescribe a medicated cream for this purpose.
  • Limit foods with caffeine such as coffee, colas, and strong tea. Caffeine can cause your body to lose even more fluid.
  • Dairy products such as milk, cheese and ice-cream may make diarrhea worse. If you feel worse after eating these foods, consult the doctor or dietitian for more information. Lactose-free beverages might be better tolerated.
  • Avoid high fat foods. If you feel worse after eating high fat foods such as deep fried foods, fatty meats, excess butter or margarine, or greasy snack food, then limit the use of these foods.
  • High fibre foods might make diarrhea worse. Ask the dietitian for a list of low fibre foods to try.
  • If you have bloating, cramping or gas then avoiding foods than can increase gas production might help. These include broccoli, cabbage, cauliflower, dried beans and peas, brussel sprouts, onions and carbonated beverages.
Fatigue

“Fatigue” is a common medical condition for people with cancer. For most people, fatigue is a temporary condition that occurs after doing some moderate to heavy activity. It usually goes away after you rest or take a quick nap. However, for cancer patients, fatigue can be chronic (meaning it doesn’t go away), and can severely affect their health and quality of life.

Causes of Fatigue

One of the most common causes of fatigue is chemotherapy treatment. Chemotherapy can lower the number of hemoglobin in your blood. Hemoglobin carry oxygen throughout your body and give you energy. Having fewer hemoglobin means that your body gets “out of breath” when you do something even mildly strenuous. Other factors that can contribute to fatigue are general cancer pain, disruption of eating and sleeping habits which are often due to nausea, pain and/or routine changes.

Signs of Fatigue

Although weakness and exhaustion are obvious indicators of fatigue, you also need to pay attention to some subtler signs.

These less obvious signs include pain in your legs, difficulties climbing stairs or walking short distances, and being short of breath after only light activity, like cooking a meal or taking a shower. Fatigue can affect the way you think and feel. It can cause you to have difficulty in concentrating, lose interest in your normal activities, and make you impatient.

Management

Everyone feels and deals with fatigue differently. Let your health care team know that you are experiencing fatigue. They can provide you with helpful information to improve fatigue, or prescribe treatments and medication to treat physical conditions like anemia.

Here are some helpful tips to assist you in dealing with fatigue:

  • Take several short naps or breaks, rather than one, long rest period.
  • Plan your day so that you have time to rest.
  • Take short walks or do some light exercise if possible. Some people find this decreases their fatigue and helps them sleep better at night.
  • Try easier or short versions of the activities you enjoy.
  • Eat as well as you can, and drink plenty of fluids.
  • Ask your family or friends to help you with tasks you find difficult or taxing.
  • Keep a diary of how you feel each day. This will help you with planning your daily activities, and can help you and your medical team regulate any anti-fatigue medication you may be taking.
  • Join a support group, or seek help from a BMT social worker. Sharing your experience with others can ease the burden of fatigue, and you can learn coping strategies from talking about it.
  • Cultivate less strenuous interests such as listening to music or reading.

Remember that you don’t have to do everything! Save your energy for things you find most important!

Female Sexuality

Sexual Design & Intercourse

Most women experience a temporary decrease in libido (desire). This may be due to tiredness, weakness, a change in how they feel about their appearance, or a general feeling of illness. Remember, sex requires extra energy! It is an individual thing, but it can take several months or more for interest to return.

Radiation and graft-versus-host disease (GVHD) may cause vaginal dryness, vaginal narrowing, inflammation of the vaginal wall, and pain with intercourse. Treatment depends on the cause. Doctors from the Endocrinology and Gynecology teams can advise you about management strategies.

Following treatment, patients may resume sexual relations. Resuming relationships will take patience and time. Communication with your partner is the key. Touching and caressing take much less energy than sexual intercourse and can be just as intimate and satisfying.

Fertility

Chemotherapy and radiation therapy can affect the ovaries, causing temporary or permanent infertility. Infertility is the inability to have children. While it is uncommon, some women do recover their ovulation after chemotherapy for two or more years post-BMT. This should be kept in mind when engaging in unprotected sexual intercourse. For some women, freezing (cryopreservation) of fertilized eggs (ova), called zygotes, may be possible prior to receiving high-dose therapy. Your BMT physician can discuss this in more detail if you wish.

Menstrual Cycle

Women will notice that their menstrual cycle, or period, becomes irregular or stops following chemotherapy or a blood and marrow transplant. If it does not stop, hormone replacement therapy may be started to stop the flow. This decreases the risk of excessive blood loss while your platelet and hemoglobin counts are low. Provera or Ovral are drugs commonly used to stop menstrual flow. Once your counts have recovered enough that blood/platelet transfusions are no longer necessary, these medications can be discontinued. Due to your increased susceptibility to infection, if you do have a period, avoid the use of tampons.

Menopausal Symptoms

After chemotherapy or blood and marrow transplant, menopausal symptoms can occur due to a lack of ovarian hormone production. Hormones are chemicals made by the body that control many different functions of the body. Menopausal symptoms include hot flashes, vaginal dryness, inflammation of the vaginal wall, pain during intercourse, irritability, and decreased libido (desire).

Hormone replacement therapy such as Premarin or Provera may be used to lessen these symptoms and to prevent bones from becoming weak and brittle, leading to osteoporosis. Some women find that using lubricants, gels or other vaginal creams such as K-Y jelly (Vaseline is not recommended) may help to relieve some of the vaginal discomfort. It is important to discuss these issues with your gynecologist or BMT doctor.

It is important to know that many of the symptoms listed here can be treated. If you have any of these symptoms, talk to your doctor. Don’t suffer alone.

Fertility Issues

Chemotherapy and total body irradiation can cause temporary or permanent infertility. Infertility is the inability to have children. Although rare, a few men and women have had children following treatment. It is important for you to discuss contraception issues with your doctor prior to discharge as well as any concerns you have regarding sexuality and fertility.

For Female Patients

Options for female patients include:

  1. Freezing (cryopreservation) of fertilised eggs (ova), called zygotes, may be possible prior to receiving high-dose therapy. Your BMT physician can discuss this in more detail if you wish.
  2. Use of donor eggs and in vitro fertilisation (IVF) in the future

For Male Patients

Sperm banking is a process available that involves freezing and storing sperm in liquid nitrogen. This sperm may be used at a later time for artificial insemination or in vitro fertilisation (IVF). Sperm can be stored in liquid nitrogen for up to ten years. This procedure depends on the sperm count and the quality of the sperm.

The patient’s underlying disease and exposure to chemotherapy or radiation can decrease sperm counts. Patients interested in sperm banking should discuss this with their physician. For some patients, treatment cannot be safely delayed and if the sperm count is low, sperm banking may not be possible. A specimen can sometimes be collected even if the first dose of chemotherapy has been given. Patients should discuss this with their physician if they have concerns or questions.

Sperm Banking – What to Expect

Ideally, three samples of ejaculate are taken. Appointments should be made at least 48 hours apart. Abstaining from intercourse or ejaculation for at least 48 hours before each appointment will produce the best sperm count. Collect the sample by masturbating. Avoid using any lubricants, including saliva, as they can harm the sperm.

The first sample will be examined by the sperm bank laboratory to see whether it should be stored. The semen is checked for amount, motility (the ability to move), and normal cell shape, before freezing and after thawing.

Fertility Clinics

There are sperm banking facilities and fertility clinics in several Canadian cities, including Vancouver. You doctor or social worker can help you contact them.

Graft-Versus-Host-Disease (GVHD)

Graft-versus-host disease or GVHD is a term used to describe a battle between the transplanted stem cells and the patient’s body. This is a complication that occurs when the new stem cells (the graft) reject or see your body (the host) as foreign.

While GVHD is extremely rare in autologous transplants, it occurs in approximately 50% of patients who have an allogeneic (donor) transplant. GVHD is less likely to occur if the donor and recipient are matched – have identical tissue or “HLA” types. The condition is considerably more common when the match is only partial or if the donor and recipient are unrelated. All patients receiving bone marrow from a donor, unless the donor is an identical twin, will receive drugs to try to prevent GVHD.

Of those who develop GVHD, many will experience only minor difficulties. About half will experience significant problems. There are two types of GVHD: acute and chronic.

Acute GVHD

Acute GVHD may occur early when the bone marrow starts to engraft around two to four weeks after the transplant. Acute GVHD may involve three main body systems:

  1. Skin GVHD usually shows up as a rash anywhere on the skin surface but it is mostly seen on the hands, feet, abdomen and face. The skin initially looks sun-burnt. The rash may progress to other areas of the body and potentially become a blister-like rash.
  2. Liver GVHD become evident in your bloodwork. Bloodwork is done regularly to test how your liver is functioning. With liver GVHD, these results become elevated. Liver GVHD may also cause the patient to become jaundiced (to have a yellow tone to the skin).
  3. Gastrointestinal Tract GVHD appears as nausea and vomiting and/or acute, watery or sometimes explosive diarrhea. The amount of diarrhea can indicate the severity of the GVHD. An exam of the gastrointestinal tract is also done to confirm GVHD.

Chronic GVHD

Chronic GVHD occurs after 100 days post-BMT. It may develop as a continuation of acute GVHD or occur without any prior history of acute GVHD. Chronic GVHD is usually less serious. It is most frequently associated with soreness or dryness of the mouth or eyes, lung and liver complications, changes in skin pigmentation. It may also cause hair loss, weight loss, vaginal dryness, cough, shortness of breath and joint problems.

Management

To manage and treat GVHD, a number of drugs such as cyclosporine, methotrexate and prednisone are used early on to help prevent or minimize GVHD. However, some side effects of the drugs can interfere with the patients’ quality of life. Your BMT doctor will discuss these with you in detail.

GVHD is not always a negative development following a blood and bone marrow transplant. This is because the immune system that attacks the host causing GVHD is also known to attack cancer cells. Researchers have found that patients with GVHD generally have a lower risk of having a relapse of their cancer.

Hair Loss

Hair loss, also known as “alopecia”, occurs because the chemotherapy treatment affects the rapidly dividing cells in the hair follicle. As a result, patients will lose most of their body hair. Areas affected will likely include the scalp, face, chest, arms, legs and pubic area.

What to Expect

Hair loss may be a difficult side effect to adjust to. It is a temporary side effect, with some exceptions.  Hair loss usually begins several days to a few weeks after chemotherapy has started.  At this time, most people notice a few more strands of hair on their pillow than usual. Once hair loss has begun, it will continue in a steady process.  Similarly, when regrowth begins, new hair will appear at a gradual, steady rate.  Hair should begin to grow back several weeks to a few months after chemotherapy has ended. It is quite common for the new hair to be a different colour and texture.

Management

Because hair loss is a gradual process, some people decide to cut their hair short or shave their head if they find the loose strands a nuisance. Shampooing, brushing or combing will usually increase the rate of hair loss.

Although hair loss can’t be prevented, there are many options to consider. Many people find that a stretchy cloth cap, scarves, baseball cap, hat, or wig can be helpful during the period of hair loss. Some people arrange to purchase these items prior to coming to the hospital so they will be available when needed. Information about financial support for the purchase of a wig is available from the Canadian Cancer Society. Not everyone chooses to cover temporary baldness. Whatever you choose, it’s important that you decide what feels right for you.

Liver Effects

The liver is responsible for “detoxifying” many of the drugs and chemicals that enter your body. It may become damaged as a result of the chemotherapy drugs used to treat the disease. The small vessels of the liver are very prone to a scarring process that is believed to be started by the high-dose therapy given prior to blood and marrow transplant. This scarring process is known as veno-occlusive disease or VOD.

VOD may occur in up to 50% of BMT patients. VOD shows up as tender, enlarged liver, yellowish discoloration of the skin (jaundice) and weight gain due to fluid retention. Although VOD can potentially be fatal, the liver has a huge capacity to recover from even severe damage.

Lung Effects

In BMT patients, the lung is a common area of infection. In addition, the lung is an organ that can be damaged by drugs or radiation. This is a frequent side effect of the chemotherapy agent Carmustine (BCNU). BCNU is used for Hodgkin’s disease and non-Hodgkin’s lymphoma patients undergoing an autologous blood and marrow transplant. Side effects on the lung may also occur as a result of total body irradiation.

This condition may resemble an infection with cough, fever and shortness of breath, but antibiotics are ineffective. It usually develops several weeks or months following blood and marrow transplant, after the patient has been discharged home from the hospital.

Management

It is critical that you or your local doctor contact your BMT doctor immediately if fever, cough and/or shortness of breath develop after returning home.

If treated early with steroid medication, the condition is curable. However, any delay in starting appropriate therapy may result in a fatal outcome for the patient.

Male Sexuality

Sexual Desire & Intercourse

Chemotherapy agents are not known to directly affect desire, ejaculation or orgasm. For many patients, however, decreased libido (desire) is common, but it is usually temporary. It may be due to tiredness, weakness, a change in how you feel about your appearance, and a general feeling of illness. Remember, sex requires extra energy! It is an individual thing, but it can take several months or more for interest to return.

Due to chemotherapy or radiation therapy, semen may appear brown or orange. This is temporary. Patients receiving chemotherapy should wear a condom during sexual intercourse, for up to seven days after the last dose of chemotherapy as some drug by-products may be present in the ejaculate.

Following treatment, patients may resume sexual relations. Resuming relationships will take patience and time. Communication with your partner is the key. Touching and caressing take much less energy than sexual intercourse and can be just as intimate and satisfying.

Fertility

Chemotherapy, radiation therapy and active disease (cancer or infection) can cause temporary or permanent infertility. Infertility is the inability to have children. Chemotherapy may lower the number of sperm cells, reduce sperm cells’ ability to move or cause other abnormalities.

While it is uncommon, some male patients recover their sperm production after chemotherapy or two or more years post-bone marrow transplant. This should be considered when engaging in unprotected sexual intercourse. For some patients, freezing (cryopreservation) of sperm, also known as sperm banking, before treatment begins may be an option. Talk to your BMT doctor for more information.

Patients should report any concerns to the physician or nurse. Don’t suffer alone.

Nausea & Vomiting

Nausea/vomiting is a very common side effect with chemotherapy.  There are many different things that can trigger nausea such as motion, heartburn, food or other odours, and feeling full after eating. It is important to keep track of these triggers and to tell your doctor or nurse about them. This way, you can get the most effective anti-nausea medication.

Management

Prior to receiving chemotherapy or total body irradiation, you will receive medications that are very effective in minimizing nausea. These medications may be given by mouth, under the tongue, or through your Hickman® line on a regular basis throughout the therapy. Some of the anti-nausea medications cause a feeling of drowsiness and many patients find that they will nap quite frequently during this procedure.

Many different anti-nausea (also called anti-emetic) medications are available to you throughout the course of your treatment.  They can be prescribed for you based on your nausea/vomiting triggers.

What You Can Do

  • Keep your mouth fresh by rinsing before and after meals/snacks.
  • Eat smallmore frequent meals/snacks throughout the day.
  • Take clear fluids such as juice, broth or jello rather than a regular meal prior to chemotherapy or total body irradiation.
  • Avoid spicyfried and greasy foods. Starchy, bland foods are better tolerated. Try saltines, rice cakes, rusks, bread sticks, plain toast, pretzels, bagels, noodles, rice, plain congee, plain roti or digestive cookies.
  • Put some crackers or biscuits by your bedside. Eating a little before you get up in the morning may help.
  • If food odours trigger your nausea, try foods that are cool/cold.  Reduce cooking odours by using a kitchen fan and keeping pots covered.
  • Choose foods based on how they will taste/feel coming back up. For example, soft foods like jello and ice-cream might be easier on your throat compared to a harder texture like chips.
  • Eat whenever your appetite is the best.
  • Learn some relaxation and distraction techniques that work well for you.
  • Wear loose, comfortable clothing.
  • If nausea is severe, rinse a facecloth with very cold water, wring it out and apply to the face and the back of the neck. Continue rinsing with very cold water and applying.
Neurologic Effects

High doses of the chemotherapy agent Cytarabine (“high-dose Ara-C” or “HIDAC”) is given to induce and maintain a complete remission. This is a very effective drug in Acute Myelogenous Leukemia (AML) but it can cause difficulties with the part of the brain, namely the cerebellum, that is responsible for co-ordination. This is particularly observed in patients over the age of 60. This side effect is usually, but not always, temporary. Patients on high-dose Cytosine Arabinoside will have their handwriting monitored as a screening test for cerebella dysfunction.

Patients who receive the chemotherapy agent Vincristine may experience numbness and tingling in the fingers and toes. This is called peripheral neuropathy. This is also usually temporary. If symptoms are severe or if the patient develops significant weakness of the hands and feet, Vincristine is discontinued.

In bone marrow transplant patients, high-doses of the chemotherapy agent Busulfan may cause seizures. Therefore, an anti-epilepsy medication, Dilantin, is given for one week prior to a bone marrow transplant to reduce the risk of seizure in patients receiving Busulfan.

Relapse

Unfortunately, patients having had chemotherapy or a blood and marrow transplant may still have a recurrence of their underlying disease, despite the treatment. This usually occurs within the first two years after chemotherapy or the blood and marrow transplant but, occasionally, occurs many years later.

It is important to realize that a blood and marrow transplant does not always cure patients with cancer. A second BMT is rarely beneficial for patients that have relapsed. However, further chemotherapy or radiation may be helpful although not curative.

In certain situations, a boost of immune cells from the original donor’s blood may be extremely effective in controlling recurrent cancer in a patient. This procedure is known as a Donor Leukocyte Infusion (DLI).

Skin Rashes

Some skin changes that can occur during and after chemoradiotherapy include dryness, peeling, colour changes, rashes and itchiness. Some of these changes, such as redness, are common with total body irradiation, and disappear quite quickly. Others, such as rashes, can come and go throughout the treatment. About two to three weeks after receiving total body irradiation, a bronze, sun-tanned appearance can develop and may last for several months. This temporary darkening of the skin is also quite common in bone marrow transplant patients that have received busulfan.

Management

It is difficult to provide specific information about skin reactions because there is a variety of possible reactions and many causes. Your physician and nurses will provide you with more detailed information. However, here are some general guidelines.

  • Keep the skin clean and moist. Mild moisturisers are helpful, but avoid perfumed soaps and toiletries.
  • If you receive total body irradiation, you should sponge bath with tepid water only and avoid the use of soap, moisturisers, and other toiletries during treatments and for several days after receiving radiation.
  • When you are discharged from hospital, minimise exposure to the sun. Following a transplant, patients may be more sensitive to the sun. Exposure to direct sunlight or damaging ultraviolet rays, even on cloudy days, could cause a flare up of skin problems. This may be prevented by avoiding direct sunlight, wearing a wide-brimmed hat and long sleeved clothing, and always wearing a sunscreen lotion of SPF 15 or higher on exposed skin.
Sore Mouth & Throat (Mucositis)

Chemotherapy and/or infections can lead to a condition called mucositis. Mucositis is an inflammation of the lining of your digestive tract and can lead to discomfort in the mouth, throat and the passage to the stomach (esophagus).

Mucositis may last for several days and will usually get better around the time your blood cell counts begin to recover. Common side effects include dryness, redness, sensitivity, sores, ulcers, and taste changes.

Management

The soreness in your mouth and throat can make it very difficult to eat. Here are some tips:

  • Inform the doctor/nurse if you develop sores in your mouth.  Medications are available to help you with the pain and the sores.
  • A regular mouth care routine will help minimize the discomfort. You will receive instructions on mouth care from the nurse and staff from the Dentistry Department. Click here to go to Patient Education > Mouth Care.
  • Drink lots of fluids to help minimize mouth dryness. If your mouth is sore, cool or room temperature drinks are often more soothing than hot ones. Try diluted sport drinks, diluted juice and flat sodas instead of plain water.
  • Avoid spicy or acidic drinks such as grapefruit or orange juice if your mouth is sore. Instead, stick to bland foods and juices such as apple or grape.
  • Choose foods that are soft, moist and easy to chew and swallow, such as ice cream, popsicles, smoothies, high protein/calorie drinks, pudding, etc.
  • If you have a mumps-like parotid gland swelling (in the side of the neck) after total body irradiation, you may find that applying ice packs to the throat will help. It may be necessary for your BMT doctor to prescribe an analgesic until the swelling goes away. The swelling usually goes away within 12-24 hours.
Taste Effects

Many patients undergoing treatment find that specific foods taste different. This may result from damage to the cells in your mouth that help to detect taste. Taste changes (dysgeusia) may also occur if there is decreased production of saliva in the mouth, causing a dry mouth (xerostomia).

Management

Taste changes are different for every person. Individual taste may change even daily and may last for several weeks. Coping with taste changes can be very challenging. Here are some tips:

  1. Keep trying different foods and you might find a new favourite. Keep a list of foods that taste good to you.
  2. Eat foods that taste good even if it means eating the same foods over and over again. Ask the dietitian for some help to make sure you are getting all the proper nutrients you need.
  3. Try eating foods at cold or at room temperature.
  4. If food/meat tastes metallic, try marinating meat to hide the taste, using plastic utensils instead of metal, using glassware instead of metallic cookware, eating other protein rich foods instead of meat such as milk, canned fish, quiche, cottage cheese, milkshakes, puddings, custard, yogurt, cheese, deviled eggs, and cold sliced meat.
  5. If food tastes too sweet, mix juice/high protein high calorie supplement drinks with water or milk, or add a pinch of salt to decrease the sweetness.
  6. Good mouth care may help with taste changes; rinse your mouth throughout the day especially before and after meals, brush your teeth and tongue with a soft toothbrush.
  7. For dry mouth, try the following foods to help stimulate your own saliva: lemonade, orange juice, cranberry juice, sugar free citrus candies, pickles, and plain yogurt. Avoid these foods if you have a sore mouth or throat.

Common side effects

Anemia

Anemia is a condition in which you don’t have enough healthy red blood cells to carry adequate oxygen to the body’s tissues. Having anemia may make you feel tired and weak. There are many forms of anemia, each with its own cause.

Some treatments can reduce your red blood cells and cause anemia. If you have anemia, you may feel very tired, dizzy or short of breath. You may have pale skin and feel weak or cold. The symptoms will go away as your body produces more red blood cells. We monitor your blood tests to determine if you need blood transfusion.

What can help:

  • Tell your health care team if you are feeling dizzy or weak. Depending on what your blood results are, you may receive a blood transfusion.
  • Move slowly to avoid getting dizzy. When you get out of bed, sit on the side of the bed for a while before you stand up. Once you stand up, ensure you feel stable on your feet before you start walking.
  • If you’re feeling weak or dizzy, call a nurse (or family member when at home) to help you to your chair or the bathroom. This is not an imposition; it is much safer for you to accept help than for you to fall and injure yourself.
  • Try to eat foods that are high in iron, such as green, leafy vegetables, liver and cooked red meats. A dietitian can help you choose foods that may help you feel better.
  • Limit some of your activities. Do only what you have to or what is most important to you.
Anxiety and Stress

Undergoing cancer treatment can affect every part of your life, including your body, feelings, relationships, self-image and sexuality. Some patients say that the emotional impact of treatment can be harder to manage than the physical changes.

Anxiety is feeling afraid, overwhelmed or very worried. Feeling anxious when you have cancer is normal, but if your anxiety becomes worse and starts to take over your thoughts and your daily life, tell your healthcare team. They can recommend someone you can talk to or give you medicine that can help.

Your emotions can change from day to day, or minute to minute. Your emotions may also change depending on there you are at in your treatment process. Some emotions can be caused or made worse by certain chemotherapy drugs as well as some hormonal therapies, steroids and pain medicines.

Some of other feelings you may have include:

  • Hopelessness, helplessness, uncertainty, impatience, isolation
  • Being out of control and overwhelmed
  • Fear of sickness, death or the unknown

All of these feelings are normal, but it is important to tell your healthcare team when you are feeling this way. 

What can help:

  • Let your health care team know you are feeling anxious. We can listen and help reassure you. Ask us questions so you will know what to expect.
  • Write down your thoughts or share your feelings with people you trust.
  • Talk to someone who has been through it. Connect with a peer support program, available through community cancer centers.
  • Eat well, get enough sleep and stay active. Try to take a 10-15 minute walk each day to boost your mood and energy.
  • Distract yourself by focusing on or doing an activity you enjoy. This will give you some relief from your thoughts and feelings. This may include things like: reading, meditation, listening to music, watching a favourite TV show or movie, painting, sketching, knitting, spending time with family and friends, etc.
  • Put on headphones, close your eyes, and listen to something that will make you feel relaxed or happy: music, guided meditation, audiobooks, podcasts, etc.
  • Look for relaxation and meditation apps for your portable device (i.e. Calm® and Headspace® apps can be trialed for free before purchasing).
  • Try relaxation techniques such as deep breathing, meditation, reiki or yoga.
  • Set realistic small goals (“Take one day at a time”). When you feel overwhelmed or you think what lays ahead will be too long or tiring, try taking it one day or even one hour at a time. This helps you focus on the here and now and see your progress one step at a time.
  • Spend time with people who make you laugh.
Appetite Changes

While you’re receiving treatment, your body needs more energy than usual. Eating helps you heal. Getting enough calories, proteins, vitamins and minerals will help prevent muscle and weight loss and may also cause less treatment side effects.

You may not feel like eating because of nausea or because of a sore or dry mouth. Appetite loss, fatigue, taste changes, stress or depression can make you want to eat more or less than usual.

What can help:

  • Ask your nurse for a referral to one of our dietitians. They can offer helpful suggestions specific to your situation.
  • Eat whatever you can manage, even if this means eating the same foods for a while. Your taste sensations will eventually improve.
  • Instead of big meals, eat smaller meals and snacks more often.
  • Relax and take your time while eating. Eat when your energy is highest.
  • Eat what works for you. Eat breakfast foods at suppertime if you feel like it.
  • Save your favourite foods for when you are feeling better. Eating your favourite food when nauseated can make you not like them.
  • Try to add calories and protein to meals: peanut butter, higher fat milk, cream, eggs, cheese, yogurt, tofu, gravies, ice cream, nuts, beans.
  • Higher nutrient fluids: fuller fat milk, smoothies, meal replacement drinks, cream soups, and hot chocolate. (Caution: dairy products can cause diarrhea).
  • Light exercise and a walk before meals can help boost your appetite.
  • Try the “Mind over Matter” approach. Even though you may not feel like eating or not find it enjoyable, think of food as something your body needs for you to heal, much like a medicine.
  • Be patient with yourself, your appetite will come back.
  • For help with taste changes, type “Food ideas to cope with taste” on www.bccancer.bc.ca or talk to your dietitian.
Bleeding and Bruising

Some chemotherapy drugs can cause your body to make fewer platelets. Platelets are cells that help the blood to clot. Without enough platelets, you may get bruises even when you haven’t bumped into anything.

We use blood tests to monitor your platelet levels. We generally give you a platelet transfusion when your levels drop below 10-20, if you are bleeding, or before certain procedures.

What can help:

  • Talk to your nurse or doctor about any bleeding or bruising issues. Depending on your blood results, we may give you a platelet transfusion.
  • Be extra careful to not bruise, cut or burn yourself.
  • Blow your nose gently to prevent a nosebleed. Do not pick your nose.
  • Use a very soft toothbrush or cotton swabs to clean your teeth.
  • Use an electric shaver instead of a razor. Electric shavers are available for use on the inpatient unit, ask your nurse.
  • If you are female and are having bleeding or spotting from your period, talk to your nurse or doctor.
  • Petechiae (“puh-tee-kee-ah”) are small purple or red spots on your skin that usually appear in clusters. They happen with a lower platelet count and although they are not harmful, they need to be watched.
  • Be extra careful when you use a knife, scissors or any sharp tool.
  • Call us immediately if you have any of the following:
  • Vomit that looks like coffee grounds
  • Black, tarry bowel movements
  • Bright red blood in your urine or stool
Constipation

Constipation means you’re not having bowel movements as often as you used to. Your stool becomes hard and dry, and having a bowel movement can be difficult or painful.

Changes in your normal bowel movements may be caused by drug treatments for cancer or other drugs you’re taking to manage nausea, diarrhea, depression, blood pressure changes, or pain. Constipation can also happen because you’ve changed your eating habits, you’re drinking less liquid or you’re less active.

What can help:

  • Talk to your nurse, dietitian and doctor. They can help suggest stool softeners, laxatives and other diet options that can help with constipation symptoms.
  • Add more fibre to your diet, a little at a time. Examples of foods with high fibre are whole grain breads and cereals, brown rice, vegetables, fruit (including dried fruit), legumes, beans, seeds and nuts.
  • Drink plenty of liquids throughout the day. Try water, fruit or vegetable juices, teas and lemonade. Hot or warm liquids like cocoa, tea or lemon water can also help.
  • Eat natural laxatives such as prunes, prune juice, coffee, and papaya.
  • Be more physically active. Just taking a walk can help.
  • Do not strain to have a bowel movement. This can cause issues with bleeding, infection and hemorrhoids. It can even cause you to faint on the toilet.
  • Do not use any rectal suppositories or enemas while receiving treatment. They can cause bleeding and increase the risk of infection.
Depression

Depression means feeling sad, hopeless, and/or feeling the loss of pleasure in nearly all activities. All of these feelings can come and go. But it could be a sign of clinical depression if:

  • the feelings become worse or last a long time
  • you also feel worthless or guilty or have regular thoughts of death or suicide
  • you also have changes in appetite, weight or sleep or have a hard time thinking
  • the feelings start to take over and negatively affect your daily life

Depression can and should be treated. It is not a sign of weakness. A person who is clinically depressed can’t just “cheer up” through will-power alone. There are treatment options available such as counselling and anti-depressant medications.

What to watch for (possible signs of depression):

  • feeling hopeless or worthless
  • crying a lot
  • not sleeping or sleeping too much
  • overeating or having no interest in eating
  • thoughts of harming yourself

What can help:

  • Ask for help. Tell your loved ones and/or your health care team that you’re having trouble.
  • Other recommendations can be found under Anxiety and Stress.
Diarrhea

Diarrhea means you have soft, loose or watery stools more than 3 times in a day. You may also have cramps and bloating or feel an urgent need to have a bowel movement.

Some drugs can cause diarrhea, but it can also be caused by infections. It’s important to tell your healthcare team if you have diarrhea so we can determine the cause and how we can help you best manage it.

What can help:

  • Tell your nurse or doctor if you have diarrhea. Depending on how frequent it is, a sample may be taken to test for infection.
  • Use soft toilet paper. Clean your bum with mild soap and water after each episode of diarrhea. Rinse well and pat dry with soft toilet paper.
  • Tell your nurse or doctor if you have any pain or bleeding in your rectal area.
  • Drink plenty of fluids, at least 8 to 10 large glasses a day. Try water, broth, fruit juices, Jell-O and sport drinks.
  • Eat high potassium foods such as bananas, apricots and peach nectars, meats and potatoes.
  • Limit the use of irritants such as coffee, chocolate and prune juice.
  • Ask your doctor before taking any over-the-counter medications for diarrhea.
  • Consider using a sitz bath, a seat that sits on your toilet. This allows you to soak your genitals and rectal area to help clean and relieve pain. Sitz baths are available on the inpatient unit and at any local pharmacy.
  • Ask your nurse about the use of protective barrier creams you can use to reduce the amount of skin irritation from frequent wiping.
Fatigue and Malaise (Feeling Tired and Unwell)

Fatigue is a feeling of being very tired. It may not get better with rest or sleep. It is the most common symptom felt by people with cancer. These symptoms are caused by many factors such as low blood counts, infections, eating less food and being less active.

Fatigue and malaise can make you feel:

  • very tired, weak, worn out, heavy or slow
  • like you can’t think or remember things
  • like you don’t have the energy to see people or do activities

Fatigue usually goes away over time after cancer treatment ends. For some people, it can take a long time to go away completely.

What can help:

  • Tell your healthcare team. It’s possible that you may need medicine, a nutritional supplement or a blood transfusion to help with your symptoms.
  • Think about the “4 P’s of Energy Conservation”
  1. Prioritize: When you have more than one thing to do, begin with the most important task to make sure it gets done.
  2. Plan: Plan your activities in advance to avoid doing extra trips.
  3. Pace: Never rush. Rest often and rest before you feel tired.
  4. Position: Sit when you can to do tasks. Avoid bending and reaching too much.
  • Rest when you need to. Take short naps of 10 or 15 minutes rather than longer naps during the day. Too much rest, as well as too little, can make you feel more tired. Save your longest sleep for the night.
  • Balance your rest and activity. Keep track of when you feel most tired and when you have more energy so you can plan activities at the best time.
  • Try to limit the length of visits with family and friends. In hospital, ask your nurse if you need help limiting the length of time visitors stay.
  • Update family and friends with group texts/emails or social media (or delegate this task!).
  • Let others help. Ask friends and family to grocery shop, cook, or babysit.
  • Drink plenty of fluids, especially water. Frequent smaller meals can be easier than 3 large meals.
  • Light exercise such as walking around the block or unit can boost your energy.
  • Find support. Talk to someone about how your fatigue makes you feel. Join a support group in person or online.
Fertility Changes

Fertility problems for a man mean he can’t get a woman pregnant. For a woman, it means she can’t get pregnant or can’t carry a pregnancy to term. Some chemotherapy and radiation treatments can cause temporary fertility problems, and sometimes they can cause permanent fertility problems. Infertility does not affect your ability to have or enjoy sexual intercourse.

Men may be able to have their sperm frozen and saved in a sperm bank before treatment begins; discuss this with your doctor as soon as possible. For newly diagnosed females, we recommend you talk to your doctor but it is usually not possible to arrange for embryo (egg) freezing before starting treatment. This is a lengthy process that can take 2 to 6 weeks and unfortunately, any delay in cancer treatment could be life threatening. It is sometimes possible for females to deliver healthy babies after cancer treatment is complete.

Preventing Pregnancy

Since not all chemotherapy medications can cause infertility, pregnancy may be possible during treatment. However, because chemotherapy damages egg and sperm cells, there could be birth defects or harm to an unborn baby. For that reason, it is important to prevent pregnancy.

If you are sexually active during treatment, please use a form of birth control. Talk with your doctor about birth control options and when it is safe to stop using it.

Coping with Changes in Fertility

Infertility can be very hard to come to terms with. The sense of loss can be strong for women and men of all ages. It can be very difficult to learn that you may no longer be able to have biological children. You also may be very sad or angry that the treatment has caused changes to your body and your self-confidence may be affected. It can help to talk to your partner, a relative or friend about how you are feeling.

More resources can be found at:

https://fertilefuture.ca/

www.olivefertility.com/- Clinics in Vancouver, Surrey and North Vancouver. This is where most male patients have sperm banking done.

Hair Loss

Some chemotherapy drugs can cause temporary hair loss or thinning. Hair loss usually starts 2 or 3 weeks after treatment begins. It may start gradually or your hair may come out in clumps. Hair loss can happen anywhere on your body.

Hair loss is usually temporary. Your hair may begin to grow back while you’re still having treatment or it may take 3 to 6 months after treatment to start growing back. Some people find that their new hair is curlier or slightly different in colour than before.

What can help:

  • Be gentle with your hair. Use a mild shampoo and a soft hairbrush.
  • Consider cutting your hair short before it falls out. Longer hair comes out easier and makes hair loss more noticeable. A family member or salon can help you cut or shave your hair, or a nurse can assist you on the inpatient unit. This is your choice and you will know if and when you feel comfortable to do so.
  • Use hats, head scarves, or wigs to keep your head warm and protected.
  • Protect your scalp from the sun using a hat or scarf and/or sunscreen.
  • If you’re interested in a wig, choose one before your hair falls out. You’ll be able to find a close match to your own hair colour and style more easily.
  • Ask your insurance company if it will cover the cost of a wig. If not, you can deduct the cost as a medical expense on your income tax return.
  • Prepare your family and friends. People close to you, especially young children, may need to be reassured when they see that you are losing your hair.
  • Talk about your feelings. Hair loss can sometimes be hard to accept.
Hemorrhoids

Although not a side effect of chemotherapy treatment, hemorrhoids are a common problem people have. They are swollen veins found both inside and outside the anus. Hemorrhoids can be made worse by other chemotherapy side effects.

Hemorrhoids can cause bleeding during bowel movements, itching and rectal pain. You may notice streaks of blood on toilet paper or bright red blood in the toilet bowl. Some hemorrhoids can become very sensitive and painful. This can lead to difficulties having a bowel movement, constipation and difficulty sitting in a chair.

What can help:

  • Tell your nurse or doctor. This is especially important when you notice any type of bleeding from your rectum.
  • Do not strain while on the toilet. This can make hemorrhoids worse.
  • Use soft toilet paper. Clean your bum with mild soap and water after each bowel movement. Rinse well and pat dry with soft toilet paper. Although it can be painful, cleaning well will help lessen your risk of infection and skin irritation.
  • Try to keep your bowel movements on the softer side to reduce pain. Talk to your health care team about medications and diet changes to help keep your stools soft. Recommendations can be found in the section on constipation.
  • Your doctor can prescribe creams or sometimes pain medications that can relieve discomfort and make it easier to pass a bowel movement. Do not insert any creams into your bum, they should only be applied to the surrounding skin.
  • Consider using a sitz bath. This allows you to soak your genitals and rectal area to help clean and relieve pain. Sitz baths are available on the inpatient unit and at any local pharmacy. Ask your nurse to help you to learn how to use it.
  • Seat cushions can help with discomfort while sitting. Occupational therapists can provide one on the inpatient unit or they can be purchased at a local pharmacy.
Infection and Fever

The chemotherapy you are given lowers your white blood cells. Normally, your white blood cells protect you from the bacteria, viruses and other harmful organisms you encounter every day. Without your white blood cells, any type of germ can make you sick with an infection.

Having a fever is a common but serious side effect. It is an important signal that tells us your body may be fighting an infection. We act quickly when you have a fever in order to stop an infection from causing serious harm.

Most patients on our units have weak immune systems (low white blood cells). We take extra care to protect everyone through infection prevention.

What can help:

  • Take your antibiotics, antifungals and antivirals as instructed. These medications help protect you from infections while your white blood cells are low.
  • Proper handwashing is the best way to prevent infections. You and all of your family members and visitors should wash your/their hands often with soap and water, especially before eating and after using the toilet. Carry a bottle of hand sanitizer when you are out of your home.
  • Check your temperature twice a day: in the morning and early evening. Check it more often if you’re feeling unwell.
  • Do not take Tylenol® (acetaminophen) unless we instruct you to.
  • Call us immediately if you have any signs of an infection including:

o A fever. This is a temperature of 38°C (100°F) or higher.

o Chills or shaking

o Burning or pain when you urinate.

  • Family and friends should NOT visit you if they have any signs of illness (i.e. new cough, fever, diarrhea, vomiting, sore throat, runny nose, etc.).
  • Shower daily or every other day. Keep your body clean.
  • Clean your anal area gently but thoroughly after a bowel movement. Wipe from the front (genitals) to the back (rectum) to avoid urinary tract infections.
  • Avoid touching your face and mouth with your hands.
  • Avoid crowded areas such as malls, markets, buses, and movie theatres.
  • Do not go swimming or use hot tubs if you have a CVC IV line or a low white cell count.

How and When to Take Your Temperature:

  • Take your temperature with a digital thermometer in Celsius twice a day: when you get up in the morning and in the early evening (around 6pm).
  • Take your temperature more often if you don’t feel well.
  • Don’t take your temperature after eating or drinking. Wait 5 minutes.
  • Clean your thermometer with warm water and dish soap. Allow to air dry.
  • Call us immediately if you have a fever of 38°C (100°F) or higher. We will give you instructions to follow.
Memory Changes and Trouble Concentrating

Chemotherapy and some other drugs can cause memory changes (sometimes called “chemo brain” or “chemo fog”). You may notice you’re forgetting things more often, having trouble focusing, or having trouble doing more than one thing at once (multi-tasking). Your memory and concentration will get better after treatment is over, but you may notice problems for a few months or longer after treatment.

What can help:

  • Use timers. Use cooking timers and safety features like automatic shut off. For example, oven timers, stove timers, and small kitchen timers. Consider wearing a watch with an alarm or using the alarm feature on your cell phone.
  • Use calendars. Keep one with you to record dates and contacts. Many cellphones have a calendar function as well.
  • Track meals, sleep and activities to help you figure out if there are patterns that affect your attention and memory.
  • Write things down. Write out questions for your healthcare team and record answers right away. Write things down when the information is detailed or complicated. Try making “To Do” lists and check off items as you complete them.
  • Involve family and friends. Bring someone to appointments; use them as memory partners and ask them to give you reminders.
  • Make notes. Use simple reminders like putting sticky notes in obvious places. This will reinforce information and help you to remember things.
  • Use electronic reminders. Cell phones and other electronic devices can be used to send reminders or alerts. Record conversations (ask permission from your health care team), or try sending yourself an email, voicemail or text reminder.
  • Take a picture. Use your smart phone to take a picture of what you need to remember, such as the sign showing where your car is parked.
  • Laugh, be patient and be forgiving of yourself.
Mouth and Throat Soreness (Mucositis)

It can be common to develop a dry or sore mouth several days after chemotherapy. This is referred to as mucositis (“mew-co-SYE-tiss”). You may notice small canker sores on the inside of your cheeks or lips, under your tongue or on the base of your gums.

What can help:

  • Tell your nurse or doctor if you have pain or notice sores in your mouth or throat. Special mouth rinses can numb your mouth and throat to make it easier to swallow. Pain medications can also be used for comfort and to help you eat.
  • Brush your teeth with a soft toothbrush. You will be prescribed a special mouth rinse to use before breakfast and at bedtime. Add water it if tastes too strong.
  • Use lip balm to keep lips moist and prevent cracking.
  • It is safe to floss if this is your usual routine but stop if you notice bleeding gums.
  • Try soft foods that are moist, bland and easy to chew or swallow such as eggs, smoothies, cream soups, yogurts, cooked cereal, mashed potatoes, ice cream and ground meats. Gravies, sauces and soups can help soften foods.
  • Eat whatever you can manage but try to avoid hot, spicy, acidic, hard or crunchy foods such as toast and hard tacos.
  • Ice chips, hard candies and popsicles can help relieve dry and sore mouth.
  • Remove dentures often to give your gums a rest. Keep dentures clean.
Muscle and Nerve Problems

Some drugs can make your muscles feel weak or make you lose your balance. They can affect your nerves, causing numbness or a tingling (pins and needles) or burning feeling in your hands or feet. Usually, these side effects are temporary. But for some people, they may last for several months after treatment is over or may be permanent. Let your healthcare team know if you have any symptoms of weak muscles, numbness, or tingling in your fingers.

What to watch for (signs of muscle or nerve problems):

  • tingling, burning, weakness or numbness in your hands or feet
  • sensitivity to hot and cold or being less able to feel hot and cold
  • pain when walking
  • weak, sore, tired or achy muscles
  • shaking, trembling, or losing your balance
  • increased difficulty doing your day to day tasks (i.e. walking, picking up objects, buttoning your clothes)

Talk to your healthcare team if you have any of these problems.

What can help:

  • Be careful with sharp objects so you don’t cut yourself.
  • Check the bottom of your feet for cuts or other wounds.
  • Move slowly and use handrails when you go up and down stairs.
  • Use no-slip mats in the bath and shower; install grab bars.
  • In your house, keep all areas clear so you don’t trip.
  • Protect your feet with shoes, socks or slippers.
  • Use gloves when taking food out of the freezer.
  • Test the water temperature with a thermometer before taking a bath.
  • Regular exercise and activity can prevent weakness.
Nausea and Vomiting

Nausea is when you are feeling sick to your stomach and feel like you have to throw up (vomit).

What can help:

  • Talk to your nurse, doctor and dietitian.
  • Take prescribed anti-nausea pills as instructed and take more “as needed”.
  • Instead of big meals, eat smaller meals and snacks more often.
  • Avoid foods that are very sweet, greasy, fried or spicy or that have a strong smell.
  • After eating, avoid lying down for at least half an hour.
  • Relax and take your time while eating.
  • Save your favourite foods for when you are feeling better. Eating your favourite food when nauseated can make you not like them.
  • Sip water and other liquids (ginger ale, sports drinks, broth) throughout the day.
  • If you’re feeling nauseated, take deep slow breaths through your mouth or place a cool cloth over your eyes and forehead.
  • Distract yourself by listening to music, watching a movie or talking to loved ones.
  • Smelling (not eating) aromatherapy oils can be helpful with nausea.
  • Cannabis has anti-nausea effects although its use on hospital property is restricted. For more information, talk to your healthcare team.

Foods and fluids that may be easier to eat:

  • Broth, water, peppermint tea, ginger tea
  • Popsicles, watered-down juices, Gatorade®, “flat” pops (i.e. ginger ale)
  • Jell-O®, sherbet
  • Soda crackers, Melba toast, pretzels, dry cereals, dry toast, plain cookies
  • Boiled potatoes, noodles, rice, congee
  • Light soup – chicken and rice, vegetable
  • Boiled or baked lean meat, poultry and fish
  • Skim or 1% milk, low fat yogurt, cheese
  • Applesauce and fresh, frozen or canned fruit and vegetables

Avoid foods that can make nausea worse:

  • Fried meats, fried eggs, sausage, bacon
  • Broccoli, brussel sprouts, onion, garlic
  • Doughnuts, pastries, coffee, other rich sauces and foods

When Should I take “As Needed” Anti-Nausea Medications?

Your doctor will prescribe you anti-nausea medications to take “as needed.” They can be given in pill or capsule form or, while you’re in hospital, intravenously (IV).

Anti-nausea medicines work best when you take them before or as you’re starting to feel sick. They may not work as well if you take them just as you are about to throw up (vomit). If you’re feeling nauseated and one medication doesn’t work after an hour, try a different one. Tell your doctor or nurse if these medications do not relieve nausea and vomiting. They can make suggestions or prescribe other medicines.

If you have nausea and vomiting at certain times of the day, take or ask for your anti-nausea medicine at least 30 minutes before that time. For example, if you often have nausea or vomit with meals, take an anti-nausea medication at least 30 minutes before your meal. If you vomit within 1 hour of taking your anti-nausea pill, you can take another pill.

Anti-nausea medications can cause side effects, including sleepiness, constipation, or diarrhea. Most people feel that these side effects are worth the benefit of having their nausea relieved.

Pain

Pain is more than just hurting. It’s also uncomfortable and upsetting. When you’re in pain, it can be harder to fight cancer or perform day-to-day activities.

What can help:

  • Tell your health care team if you are experiencing pain. They can suggest comfort measures and sometimes pain medications that can help your body relax and rest. Your body needs rest and relaxation to be able to heal.
  • Discussing what causes your pain, what type of pain it is and its patterns can help you and your health care team prevent or lessen it. For example:
  • Where do you feel pain? When did it start? What makes it better or worse?
  • What does the pain feel like? Is it dull, sharp, burning, pinching, stabbing?
  • How strong is the pain from 0 to 10, (0 is no pain, 10 is worse pain imaginable)
  • Try to stop pain before it gets worse: Sometimes people wait until their pain is bad or unbearable before taking medicine. Pain is easier to control when it’s mild. If you wait, your pain can get worse, it may take longer for the pain to get better or go away, or you may need larger doses to bring the pain under control.
  • Tell your healthcare team if you have any side effects from your pain medicine. Many people choose not to take or stop taking their medication because of side effects, but they can often be managed.
  • Try relaxation techniques. Relaxation can help relieve tension and pain.
  • If possible, continue to stay active. Gentle stretching and movement may help.
Self-Image and Sexuality

Side effects of treatment (such as hair loss, hormone changes, fatigue and emotional changes) can affect your sexuality and the way you see yourself. Common sexual changes include body image concerns, low sexual desire, vaginal dryness, difficulties with erections, pain during sexual activity, and relationship changes.

What can help:

  • Talk openly about your feelings with your partner. No one can read your mind, not even someone you have lived with for years.
  • Being physically active improves self-image and energy.
  • There are many ways to express your affection and be intimate with your partner. Touching, holding, cuddling, taking walks, good conversation, hugging, kissing, and dancing are important aspects of intimacy.
  • Talk with your health care team if you have questions or concerns about sexual or body changes, birth control, periods (menstruation) or fertility.

It is safe to have sex once your blood cell counts have recovered. Platelets should be higher than 50 and white blood cells should be 1.0 or higher.  It’s important to use some sort of birth control to prevent pregnancy while you’re receiving cancer treatment. If a pregnancy happens with an egg or sperm that has been damaged by chemotherapy or radiation, there is an increased risk for birth defects.

Suggestions to make sex more comfortable:

  • Wash your hands before and after sex or masturbation.
  • Use a water or silicone-based lubrication to help with comfort and dryness. It should be BPA and Phthalate free, the pharmacist at your local pharmacy can help you find a suitable option. If it smells, tastes or tingles, it shouldn’t be used.
  • Find positions that are comfortable. Use pillows as extra support.
  • Use medical grade silicone or glass vibrators or personal assistive devices. Wash them before and after in hot soapy water. Do not use antibacterial wipes on them.
Skin Changes

Some chemotherapy drugs and radiation can cause skin rashes, redness, itching, dryness, peeling or acne-like blemishes. A rash usually starts within a few weeks of starting treatment. It may start as redness or a warm feeling like a sunburn. The colour of your skin may become darker. Some drugs may make your fingernails and toenails become darker, ridged, yellow, brittle or cracked.

These skin conditions usually go away once treatment is over. Your healthcare team can suggest a treatment specific to your symptoms (i.e. creams, or antihistamines – Benadryl® – to reduce itchiness.)

What may help:

  • Tell and show your health care team any skin changes right away.
  • Wash with a gentle soap to reduce your risk of skin irritation and infections. Wear loose, comfortable clothes.
  • In the shower, use warm water instead of hot. Gently pat your skin dry rather than rubbing it.
  • Use a gentle moisturizer to soften your skin and help it heal if it becomes dry or cracked.
  • If your skin feels itchy or irritated, try gentle massage or pressure on the area. You can also apply a cool, damp cloth to itchy areas.
  • Keep your nails short and clean. Use cuticle cream instead of cutting the cuticles.
  • If you cut or scrape your skin, clean the area at once with warm water and soap.
  • Petechiae (“puh-tee-KEE-ah”) are small purple or red spots on your skin that happen with a lower platelet count. They are not harmful but need to be watched.
  • Your skin will become more sensitive so you should protect your skin from the sun by wearing a wide-brimmed hat and clothing that covers your arms and legs. Apply sunscreen with a SPF of at least 30 when you go outside, even if it is cloudy.
  • Avoid hot water bottles and heating pads, they can seriously burn your skin.
Sleep Pattern Changes

Having trouble sleeping (insomnia) is a common problem during treatment. You may have insomnia if you are unable to fall asleep, wake up often during the night or wake up very early and can’t go back to sleep.

Pain, anxiety, depression and some medicines can affect your sleep. Insomnia makes it harder to cope with other side effects of treatment. It can affect your mood and energy level, cause fatigue and make it hard to think and concentrate.

What can help:

  • Take only short naps (15-20 minutes) during the day.
  • Be as active as you can during the day. This can give you more energy for the day and help you sleep better at night.
  • Go to bed and get up at the same time every day.
  • Your doctor can give you a sleeping pill to help you sleep, especially on the inpatient unit. Think of this a short-term solution. Do not depend on it to sleep.
  • Relax before bedtime – have a warm shower, read, listen to music, audiobooks or podcasts. Avoid looking at the TV, cell phone screens and other electronic devices.
  • Do not have caffeine at least 6 hours before bedtime. Caffeine is found in coffee, non-herbal tea, chocolate, and soft drinks. Try not to eat a heavy meal or drink within 2 hours of bedtime.
  • Make sure your bed, pillows and sheets are comfortable. Block out distracting light, or use a sleep mask. Ear plugs are available on the inpatient unit.
  • Get up and go into another room if you’re tossing and turning in bed. Stay there until you feel sleepy enough to return to bed.
  • On the inpatient unit, your occupational therapist (OT) can help with sleeping issues and other strategies to make you more comfortable.

Complications from transplant

Infection

What is it? An infection is the invasion of harmful bacteria, viruses, and fungi or parasites in your body. These germs can come from an external source (outside the body) or from germs that you may already be carrying in your body.

How common is it? They are very common and can vary from mild to life0treatening.

What is the timeline? You are at the greatest risk in the first few months after transplant, especially while your white blood cells are low. Infections can also happen in the months and even years it takes for your new immune system to mature.

What causes it? Your immune system is weak in the weeks and months after transplant. It could be compared to the immune system of a newborn baby and needs time (12-18 months) to mature and fully protect your body from invading organisms.

What can I do? Take all your prescribed medications (antibiotics, antivirals, antifungals) as instructed, follow our infection control guidelines and let us know immediately if you have any signs of infection (ie: fever, chills, cough).

Graft versus Host Disease (GVHD)

What is it? GVHD happens when your new donor cells (the “graft”) attack your body’s cells (the “host”). There are 2 different types of graft versus host disease:

  • Acute GVHD – Can affect your gut, liver and/or skin
  • Chronic GVHD – Can affect any part of your body

How common is it? GVHD is very common. It can vary from mild to life-threatening. Chronic GVHD can impact your quality of life and increase your risk of infections.

What causes it? GVHD occurs when your new donor cells think your own body’s cells are foreign, or don’t belong, and attack them.

Why is GVHD Helpful? GVHD can be beneficial in mild to moderate cases. This is because of something called the “graft-versus-leukemia” (GVL) or “graft-versus-tumour” affect. GVL occurs when new donor cells attack any remaining diseased or cancerous cells in your body. Although this graft-versus-leukemia effect is a form of GVHD, it is helpful because it lowers the chance for your disease to return or “relapse” after the transplant.

What is the timeline? Acute GVHD usually starts in the first few weeks of transplant once your new cells have engrafted, and last up until day 100. Chronic GVHD is typically GVHD occurring any time after the first 100 days of transplant.

What will my health care team do? We give you “anti-rejection” medications before and after your transplant to prevent GVHD. There are medication options to also treat GVHD if it does occur.

What can you do? Take all your prescribed medications as directed, attend all your follow-up appointments, and let your health care team know of any symptoms you notice after your transplant. Protect your skin from the sun and avoid smoking.

Signs of Acute Graft Versus Host Disease:

  • Stomach or Gut: mild to severe diarrhea, stomach cramping, nausea & vomiting
  • Skin: a rash that looks like a sunburn on your hands, feet and face. The rash may spread to other parts of your body and may be accompanied by a fever.
  • Liver: tenderness in upper right stomach, itchy skin, jaundice (skin and/or whites of your eyes turn yellow)
Graft Failure

Graft failure is a rare but life-threatening complication of transplant. This happens when your new donor stem cells do not successfully grow in your body. This usually happens within the first weeks after transplant but can happen anytime. Your doctor will talk to you about options if this happens. In some cases, there is the possibility of having a second stem cell transplant.

Other Complications in the Body

A stem cell transplant affects your whole body and can cause mild to severe damage to your organs. These symptoms can appear in the months and sometimes years after transplant and are caused by the chemotherapy, radiation and other necessary medications you received. Infection can also cause damage to your organs.

Heart: Severe heart problems are rare but mild heart problems can be common (i.e. blood pressure changes). Tell your health care team immediately if you have any heart symptoms (chest pain, fast heartbeat, etc)

Bladder: Mild kidney and bladder problems can be common, severe kidney problems are rare. Continue to drink fluids and stay hydrated after transplant and tell your health care team if you notice pain with urination or blood in your urine.

Lung: Lung complications can be caused by treatment but are usually related to an infection. Mild breathing problems can be common, such as temporarily needing a small amount of extra oxygen. Severe breathing problems are rare, such as needing a machine to breathe for you. Look after your lungs with deep breathing exercises, staying active through treatment and avoiding smoking, dust and mold.

Bones: Bone density loss can be a common complication and increases your chances of eventually developing osteoporosis and/or breaking a bone. There are medications to prevent and treat this but good nutrition, regular weight bearing exercise (walking, jogging) and strength training are things you can do to prevent bone density loss.

Hormones: Reduced hormones levels, including the thyroid, pancreas and sex glands, can be a mild but common complication. You may need to take medications to balance these hormone changes.