Severe Aplastic Anemia

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.

Thrombocytopenia is a condition in which you have a low level of platelets in your blood.  Platelets are cells that help the blood to clot.  Having a low number of platelets puts an individual at an increased risk of bleeding and bruising.  If you have thrombocytopenia, you may notice spontaneous or easy bruising, gum bleeding, nosebleed or blood in urine or stools.  A more serious type of bleeding can occur internally such as within the head.

In patients with SAA, thrombocytopenia occurs because the bone marrow is not able to produce enough platelets to maintain a healthy level of platelets in the blood.

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

Fatigue is a feeling of being very tired.  It may not resolve with rest or sleep. It is a common symptom felt by people with SAA.  It is caused by a combination of many factors such as low blood counts, underlying infections, eating less food due to loss of appetite 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. However, individuals with SAA have a weakened immune system due to not having enough white blood cells.  It makes an individual more prone to infections and they may get more sick than usual when they develop a common infection.  

Having a fever is a common symptom of an infection. It is an important sign that your body may be fighting an infection.

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. However, individuals with SAA have a weakened immune system due to not having enough white blood cells.  It makes an individual more prone to infections and they may get more sick than usual when they develop a common infection.  

Having a fever is a common symptom of an infection. It is an important sign that your body may be fighting an infection.

Call or seek medical attention if you have any signs of an infection including: 

• A fever. This is a temperature of 38°C (100°F) or higher
• Chills or shaking
• Burning or pain when you urinate
• New cough and sputum production, particularly if associated with worsening shortness of breath
• Red, swollen and/or tender skin that may be warm to touch
• Headache, neck stiffness and light sensitivity, particularly if associated with fever or rash

A blood draw is performed so the healthcare team can assess the number and characteristics of different types of blood cells as well as rule out other causes of low blood cell numbers before making a diagnosis of SAA.

Patients suspected of having SAA require a bone marrow biopsy for confirmation of diagnosis. A bone marrow biopsy is a day procedure in which a small sample of bone and bone marrow is collected from your pelvic bone.

Newly diagnosed patients, and those requiring stem cell transplant, likely require other testing to determine their ability to tolerate the planned treatment. The diagnostic tests are designed to evaluate the health of the patient’s major organs such as the heart, lungs, liver and kidneys.  Your BMT doctor will discuss the diagnostic tests required for your individual needs in detail with you.

In SAA, medications might be given to suppress your immune system. This can help your bone marrow to produce more blood cells.

You will be admitted to hospital to receive some of this therapy. The medications that are prescribed have been very carefully planned as a protocol just for you. Before your treatment begins, your physician will review the risks and benefits with you, then ask you to sign an informed consent.

Cyclosporine
Cyclosporine (sye-kloe-spor-in) is an oral medication that is used to suppress the immune system. Many patients are on cyclosporine for a long period of time. You will have regular blood tests to check the drug level in your blood and your medical team will adjust your cyclosporin dose accordingly.  Your medical team will also be monitoring your blood cell levels and your blood pressure while on this medication. 

ATG
Anti-Thymocyte Globulin (AN-ti THIGH-mow-site GLOB-ue-lin), or ATG, is a medication that is used to reset the immune system. It is an intravenous (IV) medication, that is infused into your vein in hospital.  You will be admitted to hospital to receive ATG as it requires close monitoring for several days.  It is possible to have an allergic reaction to ATG.  Your medical team will give you some Benadryl and Tylenol prior to the infusion and steroids for a short period of time during and after ATG treatment to lower the chance of developing immediate and delayed drug reactions. 

Steroids
Steroids are a group of drugs that have been around for a long time.  You may receive high doses of IV steroids during your hospital stay, then switch to oral pills upon your return home. The dose of steroids will be tapered down over a short period of time before it can be stopped completely.

What is a transfusion?  Many different products are made from human blood. If you receive any of these products, it is called a transfusion. These products are given through a needle inserted into your vein.  

Why are transfusions needed?  Receiving blood products when they are needed can save your life. A transfusion may be needed if:  

• you lose more than 20% of your blood – this would be more than 4 cups  
• you are anemic (have a low level of red blood cells) and medicine has not helped  
• your platelets or clotting factors are low or not working properly.  

Where does donor blood come from?  Whole blood is collected from volunteer donors by the Canadian Blood Services. Donated blood is carefully tested for various infectious agents.  It is then separated into its different parts and stored in sterile conditions.  Benefits are carefully weighed against the risks before any blood products are given. If you need a transfusion, you will be given only the part you need.  Canada’s blood supply is known as one of the safest in the world.  

What can be transfused?
Red Blood Cells: Red cells carry oxygen in your blood circulation to the vital organs.  At present, there is no proven substitute for red blood cells.  A red cell transfusion may be necessary to prevent damage to your organs due to lack of oxygen.  

Platelets: Platelets are needed to prevent or stop bleeding by forming blood clots at a site of injury.  A platelet transfusion may be required for patients who have a low number of platelets or whose platelets do not work properly.  

Plasma: Plasma is a fluid component of the blood that contains many substances including the proteins that help blood clot.  

Albumin: Albumin is a protein in plasma that has many functions, which include stopping fluid from leaking out of blood vessels.  It can be used to replace fluid that has been lost from your circulation.  

Immunoglobulin Preparations: Immunoglobulins are antibodies in plasma that help fight infection.  

What are the risks of transfusion? 
Your doctor will discuss the risks of blood transfusion with you and your family. As most blood products come from other human beings, there are risks.  Some reactions that can occur are:  

• Allergic reactions: These are common, usually mild and easily treated with drugs.  Severe allergic reactions are very rare.  
• Fever: A reaction to donor blood products may result in a fever. This may happen during or shortly after the transfusion. The fever may or may not need treatment. The symptoms may consist of feeling hot and cold or having chills.  Patients who have had a fever reaction with transfusion in the past should alert their nurse and other health professionals.  
• Hemolytic transfusion reaction: This rare reaction occurs when the patient’s immune system attacks and destroys the transfused donor red cells.  A severe hemolytic transfusion reaction can result in kidney failure. Although the most cause of hemolytic transfusion reaction is wrong blood given to wrong patient, careful pre-transfusion testing cannot prevent all hemolytic transfusion reactions.
• Transmitted Infections: The chance of long-term infection (such as hepatitis), resulting in injury or death is extremely small.  However at this time, the risks cannot be completely removed by available testing or processing.  

What are the alternatives to transfusion? 
Alternatives may be available to you depending on your condition.  You will need to discuss with your doctor other options such as drugs that stimulate red cell production and IV fluids to dilute your blood.  If you choose to refuse blood and/or blood products, you must complete a “Refusal to Accept” form for each admission and/or each course of treatment.  For more information, please speak to your doctor.

High-dose chemotherapy, with or without radiation, and a Stem Cell Transplant may rid patients of any evidence of SAA.  In eligible patients, the donor cells can be obtained from a matched family member (primarily a brother or a sister). An unrelated donor may be sought for patients who do not have a suitable family donor and fail to response to immunosuppressive therapy. 

Stem cells are “baby cells” that can grow into many different types of cells and regenerate the bone marrow.  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 SAA to help the bone marrow to start producing healthy new blood cells. 

If an individual is a candidate for a transplant, patients with SAA 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, whose tissue type is well matched to that of the recipient. The stem cells can be collected from the donor’s bone marrow or blood. 

For an uncomplicated allogeneic stem cell transplant, patients are hospitalized for an approximately 1 month to receive high dose chemotherapy with or without radiation (called conditioning regime) followed by infusion of the donor stem cells through a central line that goes into one of the big veins within the chest.  A nurse will be administering the stem cell transplant and they will remain with the patient the whole time.  The stem cell infusion generally takes only 30 minutes to 1 hour. Following this, patients remain in hospital for close observation and supportive treatment until they make sufficient clinical improvement and recovery of blood cell counts (called engraftment). 

Note: A stem cell transplant may not be an appropriate treatment option for some patients, and therefore not all patients with SAA 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

Anemia is a condition in which you don’t have enough healthy red blood cells to carry adequate oxygen to the body’s tissues.  There are many forms of anemia, each with its own cause.  Some treatments such as immunosuppressive therapy or chemotherapy can reduce your red blood cells and cause anemia.  Having anemia may make you feel tired and weak or experience chest pain, shortness of breath or dizziness, particularly on exertion.  Your skin may appear paler or feel cool.  These symptoms will improve once your body is able to produce more red blood cells or you receive blood transfusion.  We will monitor your blood counts to determine if you require blood transfusion. 

What can help: 

• Tell your health care team if you are feeling dizzy or weak. Depending on what your blood test 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 a family member when at home) to help you to a chair or the bathroom. This is not an imposition; it is much safer for you to accept help than for you to risk falling and sustaining an injury. 
• 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 to what is essential or most important to you.  Listen to your body.  It is ok to take as much rest as you need while you are feeling unwell.

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 or experience abnormal bleeding. 

We use blood tests to monitor your platelet level. We generally give you a platelet transfusion when your platelet count drops below 10-20, if you develop bleeding, or in preparation for certain invasive medical procedures. 

What can help: 

• Talk to your nurse or doctor about any bleeding or bruising issues. Depending on your blood test 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 a female and having bleeding or spotting from your period, talk to your nurse or doctor. 
• Petechiae (“puh-tee-kee-eh”) are small purple or red spots on your skin that usually appear in clusters. They can develop with a lower platelet count.  Although they are not harmful, they need to be watched. 
• Be extra careful when you handle sharp objects, such as a knife or scissors. 
• Call us immediately if you have any of the following: 

• Vomitus that looks like coffee grounds 
• Black, tarry bowel movements 
• Bright red blood in your urine or stool
• New onset of headache, visual changes and/or weakness in limbs

The immunosuppressive therapy can lower your white blood cell counts.  Normally, your white blood cells protect you from the bacteria, viruses and other harmful organisms you encounter in your every day life. Without your white blood cells, any type of germ can make you sick with an infection.  

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

Most patients on our units have weaked immune systems with or without low white blood cell counts.  We take extra care to protect everyone by following stringent infection prevention procedures and protocols. 

What can help: 

• Take your antibiotics, antifungals and antivirals as prescribed. These medications help protect you from infections while your white blood cell numbers are low. 
• Proper handwashing is the best way to prevent infections.  You and all of your household members and visitors should wash hands often with soap and water, especially before eating and after using the toilet.  Carry a bottle of hand sanitizer with you 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 your health care team instructs you to. 

Call us immediately if you have any symptoms or signs of an infection including: 

• A fever. This is a temperature of 38°C (100°F) or higher. 
• Chills or shaking 
• Burning or pain when you urinate.  
• Cough and sputum production, particularly with fever or shortness of breath.
• Worsening abdominal pain with or without vomiting and diarrhea.
• Headaches, neck stiffness, and light sensitivity.
• 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. 

• Avoid raw or undercooked foods (fresh fruits and vegetables are ok if washed well). 

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.

Mucositis (“mew-co-SYE-tiss”) means inflammation of the mucosal lining of your mouth, throat and gut.  It commonly occurs several days after chemotherapy and it may cause sore mouth, painful swallowing, abdominal pain or dirrhea.  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. 

Tell your healthcare team if you are experiencing pain. They can suggest pain medications and other comfort measures to relieve pain.

Discussing the nature of the pain can help you and your health care team to come up with the best management plan. 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 the worst 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 until your pain can get worse before seeking treatment, it may take longer for the pain to get better or go away and you may need larger doses of pain medications to bring your 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 there are often alternatives that can treat your pain without causing the same side effects. 

Try relaxation techniques. Relaxation can help relieve tension and pain. 

If possible, continue to stay active. Gentle stretching and movement may help.

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 ameliorate some of the side effects of your treatment. 

You may not feel like eating because of nausea, sore, dry mouth, loss of appetitie, change in your taste buds and fatigue.   Stress or low mood 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 improve over time. 
• Instead of having few big meals, try eating smaller meals and snacks more frequently. 
• Relax and take your time while eating.  Eat when your energy level is at its highest. 
• Eat what works for you.  Eat breakfast foods at suppertime if you feel like it. 
• Save your favorite foods for when you are feeling better. Eating your favorite foods when you are feeling nauseated can make you dislike 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: higher % 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, if you can do so safely. 
• 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 in time. 
• For help with taste changes, type “Food ideas to cope with taste” on www.bccancer.bc.ca or talk to your dietitian.

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 ask more “as needed”. 
• Instead of big meals, eat smaller meals and snacks more frequently. 
• 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 you are feeling nauseated can make you dislike 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 fruits 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 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.  Many people feel that these side effects are worth the benefit of having their nausea relieved.

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 to 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 an infection.  Once an infection is ruled out, your doctor may prescribe medications to slow down your bowels.
• Use soft toilet paper. Clean your bottom 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 consumption of bowel 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.

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.  It may cause abdominal pain, distension or nausea.

Changes in your bowel habits may be caused by drug treatments for SAA or other drugs you may be 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 dietary alternatives  that can help resolve constipation. 
• Add more fibre to your diet, a little at a time. Examples of foods with a high fibre content are whole grain breads and cereals, brown rice, vegetables, fruits (including dried fruits), 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. 
• Consume natural laxatives such as prunes, prune juice, coffee, and papaya. 
• Be more physically active, if you are able to do so safely.  Taking a walk can help. 
• Do not strain to have a bowel movement.  This can cause bleeding, infection and hemorrhoids.  It can also cause you to faint on the toilet. 
• Do not use any rectal suppositories or enemas while undergoing treatment for SAA.  They can cause bleeding and increase the risk of infection.

Hemorrhoids are a common medical problem, where swollen veins found both inside and outside the anus.  They may be asymptomatic but they can cause rectal bleeding and/or pain.  Although treatment does not cause development of hemorrhoids, the symptoms of hemorrhoids can be made worse by side effects of treatment. 

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 constipation and difficulties having a bowel movement or 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.

Fatigue is a feeling of being very tired. It may not get significantly better with rest or sleep. It is the most common symptom experienced by people with SAA.  It is likely caused by many factors such as low blood cell 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 treatment ends. For some people, it can take a long time to resolve 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 making 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 to 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. 

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 during the day. 

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.  It is not advisable to use a sleeping pill for the longer term as it tends to lose its effectiveness. 
• 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 consume caffeine for 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. 

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 skin redness or warmth like a sunburn or the colour of your skin may become darker.  You may develop discrete spots or patches over your skin.  Some drugs may also 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. topical creams, or antihistamines – Benadryl® – to reduce itchiness). 

What may help: 

• Alert your health care team of 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 rather than hot water.  Gently pat your skin dry instead of 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 skin. 
• 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 may appear 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 as they can burn your skin.

Some chemotherapy drugs can cause temporary loss or thinning of hair.  Hair loss usually starts 2 or 3 weeks after beginning of treatment.  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 mild shampoo and a soft hairbrush. 
• Consider cutting your hair short before it falls out. Longer hair comes out more easily 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.

Undergoing treatment can affect every aspect 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 SAA is normal, but if you experience worsening anxiety that starts to take over your thoughts and daily life, tell your healthcare team.  They can support you by recommending a mental health professional you can talk to or providing medicines that can help with your symptoms. 

Your emotions can change from day to day, or minute to minute.  Your emotions may also change as you go through the different stages of  your treatment process.  Some emotions can be caused or excerbated by certain chemotherapy drugs, hormonal therapies, steroids and pain medicines. 

Some of other feelings you may experience include: 

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

• Shame of being a burden to others

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, clarify any concerns and provide reassurance.  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, if you are able to do so safely. 
• Give yourself a break by dedicating some time on an activity you enjoy.  This may include things like: reading, meditation, listening to music, watching a favorite TV show or movie, painting, sketching, knitting, spending time with family and friends, etc.  This may give you some relief from your worries, concerns and other emotional burdens.  
• Put on headphones, close your eyes, and listen to something that will make you feel relaxed or happy: music, guided meditation, audiobooks, podcasts, etc. 
• Try relaxation and meditation apps on your portable device (e.g. 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 the journey ahead seems too long or daunting, try taking it one day or even one hour at a time.  This may help you focus on the here and now and see your progress one step at a time.  Every little step you take today makes the journey ahead. 
• Spend time with people who make you laugh.

Depression means feeling sad, hopeless, and/or losing 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 get progressively worse or last a long time 
• you feel worthless or guilty or have regular thoughts of death or suicide 
• you have changes in appetite, weight or sleep or have difficulties with your 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” on will-power alone.  There are treatment options available such as counselling and anti-depressant medications.

Possible signs of depression: 

• feeling worthless 
• persistently depressed or irritable mood 
• not sleeping or sleeping too much 
• overeating or having no interest in eating, losing weight
• thoughts of harming yourself or others

• decreased ability to think or concentrate, feeling indecisive
• losing interest or pleasure in almost all activities
• excessive fidgeting or slowing down of all movement

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.

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

Men may be able to have their sperms frozen and stored in a sperm bank before treatment begins; discuss this with your doctor as soon as possible.  For women, we recommend you talk to your doctor.  Unfortunately, it is often not possible to arrange for embryo (egg) freezing before starting treatment because this is a lengthy process that can take 2 to 6 weeks. In many circumstances, any delay in treatment could be life threatening.  It is sometimes possible for women to deliver healthy babies after 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 this reason, it is important to prevent pregnancy while you are undergoing treatment. 

If you are sexually active during treatment, please use a form of birth control.  Discuss 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 difficult to come to terms with.  The sense of loss can be strong for women and men of all ages upon learning that you can no longer have your biological children.  You may feel very sad or angry that the treatment has caused changes to your body and it may also affect your self-confidence. It may be helpful to talk to your partner, family  or close friends 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.

Some 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 level. 
• 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 healthcare 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 treatment.  If a pregnancy happens with an egg or sperm that has been damaged by immunosuppression or radiation, there is an increased risk of birth defects. 

Suggestions to make sex safer and 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. 

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 continue to notice problems for a few months or longer after treatment.

What can help: 

• Use timers. Use cooking timers and safety features like an 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 especially if 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 with you 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 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 healthcare 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.

Some drugs can make your muscles feel weak or make you lose your balance. They can affect your nerves, causing numbness, tingling (pins and needles) or burning feeling in your hands or feet.  These symptoms are usually  temporary but they can last for several months after treatment is over or may be permanent.  Let your healthcare team know if you have any symptoms of weakness, numbness, or tingling in your limbs. 

What to watch for: 

• 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. 

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 you may already be carrying them 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 a transplant, especially while your white blood cell numbers are low.  Infections can also happen in the months and even years it takes for your new immune system to mature after the transplant.

What causes it? Your immune system is weak in the weeks and months after a 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.  This makes you more prone to get unwell from common germs we encounter in our normal everyday life.

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 (e.g. 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: 

1. Acute GVHD – Commonly affects your skin, gut, and/or liver 
2. Chronic GVHD – Can affect any part of your body 

Its severity can vary from mild to life-threatening.  Chronic GVHD can impact your quality of life and increase your risk of infections.

How common is it? GVHD is very common.  

What causes it? GVHD occurs when your new donor-derived blood cells recognize the cells of the rest of your body as foreign (not belonging to the same body) and mount an immune attack, damaging them in the process. 

Why is GVHD Helpful? GVHD can be beneficial in mild to moderate cases in certain hematological malignancies because of a process called the “graft-versus-leukemia” (GVL) or “graft-versus-tumour” affect.  GVL occurs when new donor cells attack any remaining cancer cells in the body, lowering the chance of the cancer returning after the transplant.  Any significant degree of GVHD is not desirable in patients with SAA as SAA is not a cancer and GVL plays no role in this condition.

What is the timeline? Acute GVHD usually starts in the first few weeks of transplant once the donor stem cells have engrafted (repopulated your bone marrow).  Chronic GVHD is typically develops 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.  If you develop GVHD, several treatment options are available.  The first line therapy usually consists of steroids.

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: 

1. Stomach or Gut: mild to severe diarrhea, stomach cramping, nausea & vomiting 
2. Skin: a rash that looks like a sunburn on your torso, limbs and/or face.  The rash may spread to other parts of your body and may be accompanied by a fever. 
3. Liver: abnormal liver function test without any symptoms, 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 fail to successfully engraft, grow and/or continue to thrive in your bone marrow.  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, a second stem cell transplant may be possible.

A stem cell transplant affects your whole body and can cause mild to severe damages to your organs.  The associated symptoms can appear in the months and sometimes years after a transplant.  They may be attributable to the chemotherapy, radiation and other necessary medications you have received during the transplant process. Infections can also cause damage to your organs.

Heart: Severe heart problems are rare but mild problems can be common (i.e. blood pressure changes).  Tell your healthcare team immediately if you have any symptoms, that may be related to your heart such as chest pain, palpitations (racing or irregular heartbeats, shortness of breath on exertion or worsening ankle swelling. 

Bladder: Severe kidney problems are rare but mild kidney and bladder problems can be common.  Drink plenty of fluids and stay hydrated after your transplant and tell your health care team if you notice pain on urination or blood in your urine. 

Lung: Lung complications can be caused by treatment but are more commonly related to an infection.  Mild breathing problems can be common, such as temporarily needing a small amount of supplemental oxygen.  Severe breathing problems are uncommon, 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: Loss of bone density is a common complication.  It increases your risk of developing osteoporosis and/or breaking a bone. There are medications to prevent and treat this.  Good nutrition, regular weight bearing exercise (walking, jogging) and strength training are things you can do to prevent bone density loss. 

Hormones: Reduced hormone levels, including those of thyroid, pancreas and sex glands, can be a common complication.  These changes are usually mild but some people may need to take medications to balance these hormone changes.