Anemia is a condition in which you don’t have enough healthy red blood cells to carry adequate oxygen to the body’s tissues. If you have anemia, you may feel very tired, dizzy or short of breath. You may have pale skin and feel weak or cold. There are many forms of anemia, each with its own cause. 

In CML anemia usually occurs because the marrow is full of cancerous white cells and there is less room to make normal healthy red cells.

When a patient experiences anemia, the healthcare team performs blood tests and monitors symptoms to determine the need for treatment and the appropriate management plan.

Thrombocytopenia is a condition in which you have abnormally low levels of platelets in your blood. Platelets are cells that help the blood to clot. Having low platelets can put an individual at increased risk of bleeding and bruising. 

In patients with CML, thrombocytopenia occurs due to the high level of cancerous lymphocytes in the bone marrow causing a reduction in the production of platelets.

When a patient experiences low platelets, the healthcare team performs blood tests and monitors symptoms to determine the need for treatment and the appropriate management plan.

The slow-growing cancer cells often reside in areas such as the spleen. Because of this, the organ can become enlarged and depending on the severity, may or may not cause symptoms. The most common symptom of an enlarged spleen is abdominal discomfort. Since the spleen is found on the left side of the abdomen, pain is often localized to the left side. An enlarged spleen can also present as a feeling of fullness, which can cause a decreased appetite and weight loss. 

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 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

White blood cells, , make up an individual’s immune system. Normally, these cells protect you from bacteria, viruses and other harmful organisms you encounter every day. In CML there is an excess of white cells but generally they function normally.  So patients are not generally at increased risk of infections unless the white cell counts falls as a consequence of treatment.

Having a fever is a common side effect of an infection. It is an important signal to tell you that your body may be fighting an infection.

Call or seek medical attention 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

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. Patient with CML can experience bone pain that feels like aching or sharp pain inside the bones. Tell your health care team if you are experiencing pain. They can suggest comfort measures and sometimes pain medications that can help attempt to relieve some of the pain.

Hydrea is an oral medication with few significant side effects that is capable of controlling blood counts in CML. It does lead to a resolution in CML symptoms but does not prevent the inevitable progression to accelerated/blast phase disease within an average of 4-5 years.

Imatinib or Gleevec is a drug that belongs to the family of drugs called  “tyrosine kinase inhibitors” which are drugs that specifically target a chromosomal abnormality called the Philadelphia chromosome that is found in all patients with CML.  Imatinib is taken orally and has fewer incidences of side effects than Interferon. Some of the side effects include: mild nausea or diarrhea, swelling of the face and ankles, and abnormalities in liver function tests in the blood. Current results indicate that patients who respond well to Imatinib may remain in remission for many years and in fact are predicted to have the same life expectancy as people without CML. 

Since Imatinib was first marketed in 2002, several other tyrosine kinase inhibitors have been developed..  They include dasatinib (Sprycel), nilotinib (Tasigna), bosutinib (bosulif) and ponatinib.  In general these later drugs are more potent and are used for patents that do not have an adequate response to imatinib or have difficult to manage side effects to Imatinib.
While tyrosine kinase inhibitors are often used as the initial therapy in CML patients, a stem cell transplant may be recommended for patients with high-risk CML particularly in later stages of disease (accelerated or blast phase) or for patients that have had a poor response or tolerance to tyrosine kinase inhibitor therapy.

IFN is given by injection on a daily basis and helps to control blood counts in some but not all patients with CML. This therapy results in a longer survival (6-7 years on average) than patients treated with hydrea; however, IFN does have many potential side effects. These include, fever, sweats, weight loss, fatigue, bone and muscle pain which may interfere with quality of life. Currently interferon is not used frequently because of better treatment options available (see Imatinib above).

High-dose chemotherapy, with or without radiation, and a stem cell transplant may rid patients of any evidence of CML when other treatment options have been unsuccessful or the CML has progressed to “blast phase”. 

Stem cells are “baby cells” that can grow into many different types of cells. They are able to recognize what type of cells require replacement in the body, and will mature into this particular cell. A stem cell transplant may be used for some patients with CML to try to replace the patient’s cancer cells with a donor’s healthy stem cells. 

If an individual is a candidate for a transplant, patients with CML receive an allogeneic stem cell transplant. Allogeneic refers to the type of transplant where stem cells are collected from a donor, either a relative or a volunteer donor. The donor stem cells can be collected from the donor’s bone marrow or the blood; however, it is more common practice to collect stem cells from the donor’s blood as it is a less invasive procedure. 

The transplant itself is also a non-invasive procedure. The stem cells will be infused into the patient through their Hickman Line or central venous catheter that goes into their bloodstream. A nurse will be administering the stem cell transplant and they will remain with the patient the whole time. The infusion of cells generally takes only 30 minutes to 1 hour.

Note: A stem cell transplant may not be an appropriate treatment option for some patients, and therefore not all patients with CML will receive one.

If your Transplant Physician has informed you that you are going to receive a stem cell transplant, you can download and reference the module below to obtain more thorough information regarding the allogeneic transplant process.

Your Allogenic Stem Cell Transplant PDF

During your therapy, the nurses and doctors will refer to your blood counts. These are the cells in your blood stream that are made by your bone marrow, the factory of all our blood cells. Chemotherapy affects the bone marrow’s ability to make these cells.

The blood counts to which the nurses and doctors will refer are the hemoglobin, platelets, and neutrophils. Let’s discuss each one of them:

1. Hemoglobin:

Anemia is a condition in which you don’t have enough healthy red blood cells to carry adequate oxygen to the body’s tissues. The blood count that measures our anemia is hemoglobin.

Some treatments can reduce your red blood cells and cause anemia. You may feel very tired, weak, dizzy or short of breath. You may notice that your skin, gums, and nails are pale. The symptoms will improve as your body produces more red blood cells. We monitor your hemoglobin to tell us how anemic you are, and to determine if you will need a blood transfusion.

What can help with symptoms of anemia:

• Tell your health care team if you are feeling dizzy or weak. Depending on your hemoglobin value, 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. This is not an imposition; it is much safer for you to accept help than for you to fall and injure yourself.
• Limit your activity to what is tolerable to you.

2. Platelets:

Platelets are cells that help the blood to clot. Some chemotherapy drugs can cause your bone marrow to make fewer platelets. If you have a very low platelet count, you may get symptoms such as:

• Bruises on the skin without an apparent injury
• Bleeding from the gums or nose
• Blood blisters in the mouth
• Pinhead-sized red spots in the skin, especially on the lower legs and feet. These are called petechiae (“puh-tee-kee-ah”).
• Blood in the urine or stool

You may need a platelet transfusion if your platelet count drops too low, or if you are bleeding from low platelets, or before certain invasive procedures.

What can help when you have low platelets:

• Talk to your nurse or doctor about any bleeding or bruising issues. Depending on your blood count results, we may give you a platelet transfusion.
• Certain medications can affect the way platelets function. Ask your doctor before you take aspirin, ibuprofen, or other over the counter or prescribed medications.
• 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 heavy bleeding from your menstrual period, talk to your nurse or doctor.
• 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 black coffee grounds
• Black, tarry bowel movements
• Bright red blood in your urine or stool
• New onset, severe headache

3. Neutrophils:

Neutrophils are one of the types of white blood cells. These cells are important in protecting you from infection. Chemotherapy will temporarily affect your bone marrow’s ability to make neutrophils. A fever can be a sign of infection. If you have a fever when your neutrophils are low, we may need to act quickly to give you antibiotics to stop a potential infection from causing serious harm.

What you can do to help when you have low neutrophils:

• Take your preventative medications (antibiotics, antifungals and antivirals) as instructed. These medications help protect you from infections while your white blood cells are low.
• Proper and frequent handwashing is the best way to prevent infections. 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:
• A fever. This is a temperature of 38°C (100°F) or higher.
• Feeling chilled, tremulous, lightheaded, dizzy or faint
• Burning or pain when you urinate.
• Areas of the skin that are red and hot, especially around any intravenous or “line”site
• Cough, shortness of breath, or chest pain
• 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 an indwelling 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.

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.

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.

Some 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 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 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 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 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”

• Prioritize: When you have more than one thing to do, begin with the most important task to make sure it gets done. 

• Plan: Plan your activities in advance to avoid doing extra trips. 

• Pace: Never rush. Rest often and rest before you feel tired. 

• 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 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 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.

Although not a side effect of 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.

The medication you are given sometimes 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.

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.

The drugs utilized to treat CML do not normally cause mucositis (“mew-co-SYE-tiss”). If you notice small canker sores on the inside of your cheeks or lips, under your tongue or on the base of your gums inform your health care team. 

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. 

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 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 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. 

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. 

Some 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.

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. 

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 life threatening. 

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). 

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 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.

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.

The medical term for when your blood cells recover is called ‘engraftment’. Engraftment is when your donor’s stem cells begin to make new blood cells. Engraftment usually starts 10-14 days after your stem cell transplant day but can take longer. As your blood counts recover, you will notice the side effects and symptoms from the chemotherapy (and radiation) improve.

Once you’ve been cleared for discharge from the hospital, you’ll continue to be seen as an outpatient in the Leukemia/BMT Daycare Unit up until “Day 100” (100 days after transplant) or longer. Your appointments will be every 1-3 days at first, then gradually less frequent.

Sometimes it may be necessary for you to be readmitted to hospital after being discharged. This is usually related to complications like GVHD and infection. This can feel like a big setback but don’t feel discouraged, it can be relatively common.

As you approach “Day 100” you will repeat many of the tests you had before your transplant, then meet with your attending physician to discuss the results and plan for the future.

Note: Some patients may need to continue to receive treatment in the Daycare unit beyond Day 100.

After Day 100, you’ll be referred to our Long-Term Follow-Up Program. Through the program you will receive individualized support to address your symptoms and long-term side effects after transplant.

Generally, it can take roughly 12-24 months for you to return to a relatively normal lifestyle after transplant. Adjusting to life after your stem cell transplant can feel like a slow recovery. You will likely still have good days and bad days. It will take time for you to step back into your roles, such as being a parent, spouse, employee and friend again. Be patient with yourself as you adjust and recover.

Stem cell transplantation can have long-lasting or late-onset effects on your body and as such you need to be monitored and examined regularly for signs of complications and disease recurrence.  The L/BMT Program of BC offers long-term follow up (LTFU) care through our comprehensive survivorship program.

The LTFU Program can offer you support, treatment and education post-transplant. The LTFU team consists of a multidisciplinary team of healthcare providers who specialize in oncology and survivorship care. The clinic focuses on identifying, preventing, and managing any long-term and late effects associated with transplant. Your visits will involve assessment and management of complications or issues you may be experiencing, and development of a plan to support your future health.