Download Module - Leukemia/BMT Program of BC

Leukemia / Bone Marrow Transplant (BMT)
Program of British Columbia
Patient Education Manual
Chemotherapy
Module
Contents
Introduction1
Conditioning Treatment
Total Body Irradiation
3
4
What to Expect.......................................................................................................................... 4
Possible Side Effects................................................................................................................... 4
Chemotherapy Agents
5
Alemtuzumab (CAMPATH)....................................................................................................... 6
Azacitidine (Vidaza).................................................................................................................... 6
Bortezomib (Velcade)................................................................................................................ 6
Busulfan...................................................................................................................................... 7
Carboplatin................................................................................................................................ 7
Carmustine (BCNU).................................................................................................................. 8
Cyclophosphamide.................................................................................................................... 8
Cytarabine (Ara-C).................................................................................................................... 9
Daunorubicin............................................................................................................................. 9
Etoposide (VP-16)...................................................................................................................... 9
Fludarabine.............................................................................................................................. 10
Melphalan................................................................................................................................. 11
Rituximab................................................................................................................................. 11
Vincristine................................................................................................................................ 11
Managing Side Effects & Complications
13
What are the common side effects and complications?
14
Bladder Effects(Hemorrhagic Cystitis)..................................................................................... 15
Bleeding & Transfusion............................................................................................................. 15
Cardiac Effects......................................................................................................................... 17
Diarrhea................................................................................................................................... 17
Fatigue..................................................................................................................................... 18
Female Sexuality...................................................................................................................... 19
Fertility Issues.......................................................................................................................... 21
Hair Loss (Alopecia)................................................................................................................. 22
Liver Effects............................................................................................................................. 22
Lung Effects.............................................................................................................................. 23
Male Sexuality.......................................................................................................................... 23
Nausea & Vomiting.................................................................................................................. 24
Neurologic Effects................................................................................................................... 25
Relapse..................................................................................................................................... 26
Skin Rashes............................................................................................................................... 26
Sore Mouth & Throat (Mucositis)............................................................................................ 27
Taste Effects............................................................................................................................. 27
Other Drugs
L/BMT Patient Education Manual • Chemotherapy Module
29
Introduction
W
e
have put together this Chemotherapy Module to help patients, their families and caregivers learn
about chemotherapy and total body irradiation, as well as their possible side effects and how to
manage them. There are many caring and knowledgeable people on your health care team to help you
through your treatment, address your concerns and answer your questions. Please do not hesitate to
speak to them!
Introduction
Notes
L/BMT Patient Education Manual • Chemotherapy Module
Conditioning
Treatment
Leukemia / Bone Marrow Transplant (BMT)
Program of British Columbia
Total Body Irradiation
Some patients will receive radiation therapy in addition to chemotherapy. Like chemotherapy, total body
irradiation (TBI) is used to eliminate the disease and in the case of allogeneic (donor) transplant to suppress
the patient’s immune system in preparation for the transplanted stem cells.
What to Expect
Having TBI is a little bit like having an X-ray. The Radiotherapy Staff will wait outside the room during the
actual TBI treatment. There is an intercom system so that you may talk with the staff at any point during
the treatment. Radiation is given by a machine that sends rays of high energy into your body. The cells in
your body are prevented from growing when they receive these high-energy rays. The TBI treatments are
painless and each treatment should be completed in 20 minutes. It is important to know that patients who
receive TBI do not become radioactive, nor do the body and clothes pass on radiation to others. You will be
instructed not to wear jewellery during treatments because metal may change the dose of radiation. Wigs
and hairpieces are also removed during the treatment sessions.
Total body irradiation is given in the Radiotherapy Department at the BC Cancer Agency. TBI is usually
given in twice-daily doses, morning and afternoon, over three separate days. These days can be a little
hectic because of the number of trips from the hospital room to the Radiotherapy Department. These
trips involve passing through a tunnel under Heather Street to access the BC Cancer Agency. A friend or
family member may go with you to your appointments in the Radiotherapy Department if you wish. The
treatment room is equipped with a tape player so you may bring audiotapes of your favourite music during
these appointments.
Possible Side Effects
Some of the more immediate side effects that may occur as a result of TBI include: nausea, fatigue, swollen
glands in the throat area and skin changes.
• Some skin changes are specific to total body irradiation. A temporary redness or
rash is common. This usually occurs after a couple of radiation treatments and
decreases soon after they are completed.
• About two to three weeks after receiving total body irradiation, a bronze, suntanned appearance can develop and may last for several months.
• Patients who receive total body irradiation should sponge bath with tepid water
only and avoid the use of soap, moisturizers, and other toiletries during treatment
and for several days after receiving radiation.
• If you have a mumps-like parotid gland swelling (in the side of the neck) after total
body irradiation, you may find that applying ice packs to the throat will help. It
L/BMT Patient Education Manual • Chemotherapy Module
4
may be necessary for your BMT doctor to prescribe an analgesic until
the swelling goes away. The swelling usually goes away within 12–24
hours.
Side effects and their management will be discussed in detail by the
Radiation Physician.
Chemotherapy Agents
The chemotherapies that are prescribed have been very carefully planned as
part of a protocol. A protocol is a precisely timed and organized approach to
the treatment of your disease. Before your treatment begins, you will be asked
Patients
who receive total
body irradiation should
sponge bath with tepid
water only and avoid the
use of soap, moisturizers,
and other toiletries during
treatment and for several
days after receiving
radiation.
to sign an informed consent that reviews your protocol. This assures that you have
been given all the important information including the risks and benefits of your treatment.
Chemotherapy is an important part of your treatment and will consist of one or more different types of
medications depending on the type of disease you have. The chemotherapy is given on a special schedule
that is thought to be best for killing your cancer cells and yet minimally harming your body. Your doctor
will discuss with you what days you will receive chemotherapy, the type of chemotherapy and how you
should expect to feel. These medications will be given to you intravenously or in capsule form to be taken
by mouth.
Below is a list of chemotherapy agents that are used in our protocols. This is not an exhaustive list. The drugs
you will receive will depend on your protocol. Your BMT doctor and clinical pharmacist will discuss
these in detail with you. You may also refer to the BC Cancer Agency Drug Manual© at www.bccancer.bc.ca
for a complete guide on chemotherapy agents.
• Alemtuzumab (CAMPATH)
• Azacitidine (Vidaza)
• Bortezomib (Velcade)
• Busulfan
• Carboplatin
• Carmustine
• Cyclophosphamide
• Cytarabine (Ara-C)
• Daunorubicin
• Etoposide (VP-16)
• Fludarabine
• Melphalan
• Vincristine
5
Conditioning Treatment • Total Body Irradiation
Alemtuzumab (CAMPATH)
Alemtuzumab (uh-lem-TOOZ-uh-mab) is a drug that is used to treat many types of cancer. It is a monoclonal
antibody, a type of protein designed to target and kill cancer cells. It is a clear liquid that is injected into a
vein.
Common Side Effects
• A flu-like illness may occur shortly after your first treatment with alemtuzumab
and with each increase in dose.
• Fever and chills frequently occur.
• Nausea and vomiting may sometimes occur. It may last for 24 hours.
• Dizziness and headache may sometimes occur.
• Muscle or joint pain may sometimes occur.
• Numbness or tingling of the fingers or toes may occur. This will slowly return to
normal once your treatment is over. It may take up to several months.
• Hair loss does not occur with alemtuzumab.
Azacitidine (Vidaza)
Azacitidine (ay-za-site-i-deen) is a drug which is used to treat myelodysplastic syndrome and some acute
leukemias. It is a drug which is injected under the skin.
Common Side-effects
• Bruising, redness and pain at the injection site
• Nausea and vomiting can occur
• Constipation requiring laxative may occur
• Your white blood cell counts may decrease a week after treatment is started
Bortezomib
Bortezomib (bor-TEZ-oh-mib) or Velcade is a drug which is used to treat multiple myeloma and related
disorders. It can be injected into the vein or injected under the skin.
Common side-effects
• Rashes may occur at the site of injection if given under the skin
• Platelets levels may drop but it typically recovers
L/BMT Patient Education Manual • Chemotherapy Module
6
• Numbness, tingling or pain of the fingers or toes may occur. If this happens, you
should tell your doctor before your next injection. In general, these symptoms
will improve over time but adjustments to the dose and administration may be
needed.
• Diarrhea or constipation may occurs.
Busulfan
Busulfan (byoo-SUL-fan) is a drug, which is used to treat blood cancers. It reduces the number of blood
cells. It is a clear liquid that is injected slowly into a vein.
Common Side Effects
• Hair loss is rare with busulfan. Colour or texture may change. If hair loss does
occur, your hair will grow back once you stop the treatment.
• Your skin may darken after you have taken busulfan for a while. This occurs most
often in pressure areas such as elbows, knees and skin creases.
Carboplatin
Carboplatin (KAR-boe-plat-in) is a drug used to treat many kinds of cancer. It is a clear liquid that is injected
into a vein.
Common Side Effects
• Nausea and vomiting may occur after your treatment and may last for 24 hours.
• Your platelet count may decrease 3 weeks after your treatment. Platelets help to
make your blood clot when you hurt yourself. You may bruise or bleed more easily
than usual.
• Your white blood cells will decrease 3–4 weeks after your treatment. White blood
cells protect your body by fighting germs that cause infection. When white blood
cells are low, you are at a greater risk of getting an infection.
• Hair loss is rare with carboplatin. Colour or texture may change. If hair loss does
occur, your hair will grow back once you stop the treatment.
7
Conditioning Treatment • Chemotherapy Agents
Carmustine (BCNU)
Carmustine (kar-MUS-teen) is a drug that is used to treat many types of cancer. It is a clear liquid that is
injected into a vein.
Common Side Effects
• Carmustine burns if it leaks under the skin. Tell your nurse or doctor immediately
if you feel burning, stinging or other change while the drug is being given.
• Pain along the vein, dizziness, flushing of the skin and eye irritation may occur
during administration of carmustine. This can begin within 2 hours of receiving the
drug. It may last for 4 hours.
• Nausea and vomiting may occur after your treatment and may last for 4–6 hours.
• Hair loss is rare with carmustine. Colour and texture may change. If hair loss does
occur, your hair will grow back once you stop the treatment.
Cyclophosphamide
Cyclophsphamide (sigh-kloe-FOSS-fa-mide) is a drug that is used to treat many types of cancer. It is a clear
liquid that is injected into a vein.
Common Side Effects
• Nasal congestion, runny eyes and nose and sneezing may occur during or
immediately after administration of cyclophosphamide.
• Mouth sores can occur a few days after treatment. These can occur on the tongue,
the sides of the mouth or in the throat. Follow good oral hygiene to prevent
infection.
• Hair loss is common. It may begin within 3–6 weeks after start of treatment. Your
hair may thin or you may become totally bald. You may lose hair on your face and
body. Your hair will grow back once your treatments are over.
• Bladder inflammation may occur. If your treatment allows, drink plenty of fluids and
empty your bladder frequently every 2 hours for at least a day after your dose.
• Loss of appetite and weight are common. This may persist long after your treatments
with cyclophosphamide are over.
L/BMT Patient Education Manual • Chemotherapy Module
8
Cytarabine (Ara-C)
Cytarabine (sye-TARE-a-been) or Ara-C is a drug that is used to treat many types of cancer. It is a clear
liquid that is injected into a vein, muscle or under the skin.
Common Side Effects
• Fever may commonly occur shortly after treatment with cytarbine. Fever should
last no longer than 24 hours.
• Mouth sores on the tongue, the sides of the mouth or in the throat may occur a
few days after treatment. Follow good oral hygiene to prevent infection.
• Confusion, memory loss and/or abnormal speech or body movements may
sometimes occur. These usually go away on their own in 5–10 days.
• Hair loss is rare with cytarabine. Colour and texture may change. If hair loss does
occur, it will grow back once you stop the treatment.
Daunorubicin
Daunorubicin (dawn-oh-ROO-biss-in) is a drug that is used to treat many kinds of cancer. It is a red liquid
that is injected into a vein.
Common Side Effects
• Daunorubicin burns if it leaks under the skin. Tell your nurse or doctor immediately
if you feel burning, stinging or any other change while the drug is being given.
• Your urine may be pink or reddish for 1–2 days after your treatment.
• Nausea and vomiting may occur. It may last for up to 48 hours.
• Hair loss is common and may begin within a few days or weeks of treatment. Your
hair may thin or you may become totally bald. You may lose hair on your face and
body. Your hair will grow back once your treatments are over.
• Your skin may darken in some areas such as your hands, elbows and knees.
Etoposide (VP-16)
Etoposide (ee-TOP-aw-side) or VP-16 is a drug that is used to treat many types of cancer. It is a clear liquid
that is injected into a vein.
9
Conditioning Treatment • Chemotherapy Agents
Common Side Effects
• Etoposide burns if it leaks under the skin. Tell your nurse or doctor immediately if
you feel burning, stinging or any other change while the drug is being given.
• Your white blood cells will decrease 1–2 weeks after your treatment. White blood
cells protect your body by fighting germs that cause infection. When white blood
cells are low, you are at a greater risk of getting an infection.
• Your platelets may decrease 1–2 weeks after your treatment. Platelets help to
make your blood clot when you hurt yourself. You may bruise or bleed more easily
than usual.
• Hair loss is common and may begin within a few days or weeks of treatment. Your
hair may thin or you may become totally bald. You may lose hair on your face and
body. Your hair will grow back once your treatments are over.
• Mouth sores may occur a few days after treatment. These may occur on the
tongue, on the sides of the mouth or in the throat. Follow good oral hygiene to
prevent infection.
• Taste changes may occur.
• Diarrhea or constipation may occur.
Fludarabine
Fludarabine (floo-DARE-a-been) is a drug that is used to treat many types of cancer. It is a clear liquid that
is injected into a vein.
Common Side Effects
• Skin rashes may sometimes occur.
• Fever, chills and sweating may commonly occur. Fever should last no longer
than 24 hours.
• Diarrhea may sometimes occur.
• Muscle or joint pain may sometimes occur.
• Swelling of hands, feet or lower legs may sometimes occur if your body retains extra fluid.
• Numbness or tingling of the fingers or toes may occur. This will slowly return to
normal once your treatment is over. It may take up to several months.
• Blurred vision sometimes occurs.
• Hair loss is rare with fludarabine. If it does occur, it will grow back once you stop
the treatment.
L/BMT Patient Education Manual • Chemotherapy Module
10
Melphalan
Melphalan (MEL-fa-lan) is a drug that is used to treat many types of cancer. It is a clear liquid that is injected
into a vein.
Common Side Effects
• Melphalan burns if it leaks under the skin. Tell your nurse or doctor immediately if
you feel burning, stinging or any other change while the drug is being given.
• Pain or tenderness may occur where the needle was placed.
• Nausea and vomiting may occur after your treatment. It may last for 48 hours.
• Mouth sores may occur a few days after treatment. These may occur on the
tongue, on the sides of the mouth or in the throat. Follow good oral hygiene to
prevent infection.
• Hair loss sometimes occurs with melphalan. Colour and texture may change. If
hair loss does occur, your hair will grow back once you stop the treatment.
Rituximab
Rituximab (rye-TUX-im-ab) is a drug that is used to treat some kinds of lymphomas. Rituximab is a clear
liquid that is injected slowly into a vein.
Common Side Effects
• Chills or fever and swelling of the tongue or throat are common during the first
treatment.
• Hives may occur. These usually occur during or 24 hours after the infusion.
• Nausea may occur but most patients have little or no nausea.
• Hair loss does not occur with rituximab.
Vincristine
Vincristine (vin-KRIS-teen) is a drug that is used to treat many types of cancer. It is a clear liquid that is
injected into a vein.
Common Side Effects
• Vincristine burns if it leaks under the skin. Tell your nurse or doctor immediately if
you feel burning, stinging or any other change while the drug is being given.
• Constipation often occurs and may be severe. If your treatment allows, exercise
11
Conditioning Treatment • Chemotherapy Agents
if you can, use stool softeners and laxatives and drink plenty of fluids. Avoid bulkforming laxatives.
• Headache, jaw and or muscle pain may occur.
• Numbness or tingling of the fingers or toes may occur. This will slowly return to
normal once your treatment is over. It may take up to several months.
• Hair loss sometimes occurs with melphalan. Colour and texture may change. If
hair loss does occur, your hair will grow back once you stop the treatment.
Notes
L/BMT Patient Education Manual • Chemotherapy Module
Managing Side Effects
& Complications
Leukemia / Bone Marrow Transplant (BMT)
Program of British Columbia
M
ost
people find it helpful to have information about side effects so they know what to expect and
how to manage them. Although the side effects of treatment can be unpleasant, it is important to
know that they are usually temporary. Many of these side effects and complications can be treated with
medications and careful monitoring.
Remember that all patients are unique. No two persons will have the same experience with side effects.
The degree and intensity of each possible side effect also vary greatly from person to person.
Your BMT healthcare team will work closely with you to minimize any discomfort that you may have as a
result of your treatment.
What are the common side effects
and complications?
The common side effects and complications of chemo/radiotherapy are:
• Bladder Effects
• Bleeding & Transfusion
• Cardiac Effects
• Diarrhea
• Fatigue
• Female Sexuality
• Fertility Issues
• Hair Loss
• Liver Effects
• Lung Effects
• Male Sexuality
• Nausea & Vomiting
• Neurologic Effects
• Relapse
• Skin Rashes
• Sore Mouth & Throat
• Taste Effects
L/BMT Patient Education Manual • Chemotherapy Module
14
Bladder Effects
(Hemorrhagic Cystitis)
The urinary tract is a common area for infection in the general
population as well as BMT patients. However, in BMT patients
bladder inflammation caused by the use of Cyclophosphamide
prior to most transplants can occur. This can resemble a urinary
tract infection with symptoms including burning and frequent
Common
side effects
&
complications
urination as well as visible blood or blood clots in the urine. This
complication is called hemorrhagic cystitis.
Management
To prevent this, large volumes of IV fluids are given while you receive
cyclophosphamide in order to flush out the bladder. You are also
encouraged to urinate as soon as you get the urge in order to
prevent the drug from sitting in the bladder for too long.
Bleeding & Transfusion
Bleeding as a Side Effect
Patients receiving chemotherapy or having a blood and marrow
transplant will have a period of time when their platelet count
is low. Platelets are responsible for promoting clotting of the
blood, and when they are low, patients are prone to bleeding
(hemorrhage).
Patients with low platelet counts may also experience excessive
bruising, but this is not generally a serious complication. On the
other hand, when bleeding occurs from the gastrointestinal tract or
into the lungs or brain, this can be life-threatening.
Management
The risk of serious hemorrhage is minimized by transfusion of platelets
Bladder Effects
Bleeding &
Transfusion
Cardiac Effects
Diarrhea
Fatigue
Female Sexuality
Fertility Issues
Hair Loss
Liver Effects
Lung Effects
Male Sexuality
Nausea & Vomiting
Neurologic Effects
Relapse
Skin Rashes
Sore Mouth &
Throat
Taste Effects
when the platelet count is less than 10. In situations where patients are
already bleeding or have a high fever, platelet counts are usually kept at an
even higher level.
15
Managing Side Effects & Complications
Transfusion Risks, Side Effects
& Management
Everything possible is done to reduce the risks associated with blood transfusions; however, you should be
aware of the possible risks:
1. Viral infections: Although blood products are rigorously tested and screened
for viruses before being released by the Canadian Blood Services, it is possible
that viruses may be transmitted to a patient through a transfusion. The risk of
this is exceedingly low. While any blood transfusion that can be avoided, will be;
the benefits of blood product transfusion in BMT patients far outweigh the risks
involved. You can get more information about the risks from your doctor.
2. Allergic reactions: You might feel itchy or get a rash with transfusions. However,
these reactions are easily treated with antihistamines and anti-inflammatories.
Rarely, allergic reactions may be severe and produce shortness of breath or throat
swelling.
3. Fever, rigors, shakes: A reaction may occur from substances in the donor blood,
which may result in a fever. The symptoms may consist of feeling cold or having
chills, followed by a rapid rise in body temperature (fever). This response occurs
during or shortly after the transfusion has been completed. If required, it can be
controlled with simple medications such as acetaminophen or Tylenol. If you have
had a history of fever reactions with prior transfusions, you should tell the doctor.
4.Hemolytic reactions: This rare reaction occurs when antibodies in the patient’s
blood react against the donor red cells, destroying them. This is called hemolysis
and can result in kidney failure. To ensure that the correct blood is given to prevent
this reaction, careful blood testing, processing and administering procedures are
required.
5.Iron overload: If blood product transfusion is required for an extended period of
time, it is possible for the body to accumulate too much iron. This could lead to
problems with liver or heart function. Once patients no longer require transfusions,
blood may have to be removed from the body as medical therapy to remove
excess iron. This procedure is called a phlebotomy. If patients with iron overload
are still requiring transfusion, a drug (Desferal) can be prescribed to assist in iron
excretion from the body.
6.Previous reactions: You should let the doctor know if you have had a reaction
L/BMT Patient Education Manual • Chemotherapy Module
16
from blood transfusions in the past, so that steps can be taken to prevent it from
recurring.
Cardiac Effects
The chemotherapy agent Daunorubicin and related drugs (called anthacyclines) can damage the heart
muscle. The likelihood of this occurring depends on the amount of Daunorubicin given and the presence of
underlying heart problems in the patient. If heart damage occurs, it is not usually associated with chest pain
but causes difficulty with breathing following exercise or when laying flat, such as when the patient sleeps.
In patients undergoing a blood and marrow transplant, heart complications are rare but damage can occur
with the high-dose therapy, particularly when Cyclophosphamide or total body irradiation is used.
Management
To monitor for this complication, patients may have one or more heart scans (RVG or MUGA studies) done
to measure how well their heart is functioning.
Diarrhea
Your treatment can create changes throughout the bowel that are similar to the changes in the mouth,
throat and esophagus. One side effect that commonly occurs as a result of these changes is diarrhea,
gas and cramping.
Diarrhea can cause your body to lose fluids and nutrients which can make you feel very weak and dehydrated.
It is very important to let your doctor and nurse know if you are having diarrhea. Uncontrolled diarrhea can
lead to serious complications such as dehydration.
Like other side effects, the amount and frequency of diarrhea vary from patient to patient. The staff
understand that this side effect may be embarrassing for you and they will make every effort to work out
a plan that is comfortable for you. This may include dietary suggestions and medications that can help with
cramping and the frequency of diarrhea.
Management
The following tips might be useful if you are having diarrhea:
• Keep the rectal area clean to prevent skin irritation. A “sitz bath” or soak in warm
water should be taken after bowel movements followed by the application of a
mild cream to keep the area protected. Your BMT doctor may opt to prescribe a
medicated cream for this purpose.
• Limit foods with caffeine such as coffee, colas, and strong tea. Caffeine can cause
17
Managing Side Effects & Complications
your body to lose even more fluid.
• Dairy products such as milk, cheese, ice-cream may make diarrhea worse. If
you feel worse after eating these foods, consult the doctor or dietitian for more
information. Lactose-free food and beverages might be better tolerated.
• Avoid high fat foods. If you feel worse after eating high fat foods such as deep fried
foods, fatty meats, excess butter or margarine, or greasy snack food, then limit the
use of these foods.
• High fibre foods might make diarrhea worse. Ask the dietitian for a list of low fibre
foods to try.
• If you have bloating, cramping or gas then avoiding foods than can increase gas
production might help. These include broccoli, cabbage, cauliflower, dried beans
and peas, brussel sprouts, onions, and carbonated beverages.
Fatigue
“Fatigue” is a common medical condition for people with cancer. For most people, fatigue is a temporary
condition that occurs after doing some moderate to heavy activity. It usually goes away after you rest or
take a quick nap. However, for cancer patients, fatigue can be chronic (meaning it doesn’t go away), and
can severely affect their health and quality of life.
Causes of Fatigue
One of the most common causes of fatigue is chemotherapy treatment. Chemotherapy can lower the
number of hemoglobin in your blood. Hemoglobin carry oxygen throughout your body and give you energy.
Having fewer hemoglobin means that your body gets “out of breath” when you do something even mildly
strenuous. Other factors that can contribute to fatigue are general cancer pain, disruption of eating and
sleeping habits which are often due to nausea, pain and/or routine changes.
Signs of Fatigue
Although weakness and exhaustion are obvious indicators of fatigue, you also need to pay attention to some
subtler signs. These less obvious signs include pain in your legs, difficulties climbing stairs or walking short
distances, and being short of breath after only light activity, like cooking a meal or taking a shower. Fatigue
can affect the way you think and feel. It can cause you to have difficulty in concentrating, lose interest in
your normal activities, and make you impatient.
Management
Everyone feels and deals with fatigue differently. Let your health care team know that you are experiencing
L/BMT Patient Education Manual • Chemotherapy Module
18
fatigue. They can provide you with helpful information to improve fatigue, or
prescribe treatments and medication to treat physical conditions like anemia.
Here are some helpful tips to assist you in dealing with fatigue:
• Take several short naps or breaks, rather than one, long rest period.
• Plan your day so that you have time to rest.
• Take short walks or do some light exercise if possible. Some people find this
Remember
that you
don’t have to do
everything! Save your
energy for things
you find most
important!
decreases their fatigue and helps them sleep better at night.
• Try easier or shorter versions of the activities you enjoy.
• Eat as well as you can, and drink plenty of fluids.
• Ask your family or friends to help you with tasks you find difficult or taxing.
• Keep a diary of how you feel each day. This will help you with planning your
daily activities, and can help you and your medical team regulate any anti-fatigue
medication you may be taking.
• Join a support group, or seek help from a BMT social worker. Sharing your
experience with others can ease the burden of fatigue, and you can learn coping
strategies from talking to others about it.
• Cultivate less strenuous interests such as listening to music or reading.
Remember that you don’t have to do everything! Save your energy for things you find most important!
Female Sexuality
Sexual Desire & Intercourse
Most women experience a temporary decrease in libido (desire). This may be due to tiredness, weakness,
a change in how they feel about their appearance, or a general feeling of illness. Remember, sex requires
extra energy! It is an individual thing, but it can take several months or more for interest to return.
Radiation and graft-versus-host disease (GVHD) may cause vaginal dryness, vaginal narrowing, inflammation
of the vaginal wall, and pain with intercourse. Treatment depends on the cause. Doctors from the
Endocrinology and Gynecology teams can advise you about management strategies.
Following treatment, patients may resume sexual relations. Resuming relationships will take patience and
time. Communication with your partner is the key. Touching and caressing take much less energy than
sexual intercourse and can be just as intimate and satisfying.
19
Managing Side Effects & Complications
Fertility
Chemotherapy and radiation therapy can affect the ovaries, causing temporary or permanent
infertility. Infertility is the inability to have children. While it is uncommon, some women do
Remember,
sex requires
extra energy! It is
an individual thing,
but it can take
several months or
more for interest
to return.
recover their ovulation after chemotherapy for two or more years post-BMT. This should
be kept in mind when engaging in unprotected sexual intercourse. For some women,
freezing (cryopreservation) of fertilized eggs (ova), called zygotes, may be possible
prior to receiving high-dose therapy. Your BMT physician can discuss this in more
detail if you wish.
Menstrual Cycle
Women will notice that their menstrual cycle, or period, becomes irregular or
stops following chemotherapy or a blood and marrow transplant. If it does not
stop, hormone replacement therapy may be started to stop the flow. This decreases
the risk of excessive blood loss while your platelet and hemoglobin counts are low.
Provera or Ovral are drugs commonly used to stop menstrual flow. Once your counts
have recovered enough that blood/platelet transfusions are no longer necessary, these
medications can be discontinued. Due to your increased susceptibility to infection, if you do
have a period, avoid the use of tampons.
Menopausal Symptoms
After chemotherapy or blood and marrow transplant, menopausal symptoms can occur due to a lack of
ovarian hormone production. Hormones are chemicals made by the body that control many different
functions of the body. Menopausal symptoms include hot flashes, vaginal dryness, inflammation of the
vaginal wall, pain during intercourse, irritability, and decreased libido (desire).
Hormone replacement therapy such as Premarin or Provera may be used to lessen these symptoms and
to prevent bones from becoming weak and brittle, leading to osteoporosis. Some women find that using
lubricants, gels or other vaginal creams such as K-Y jelly (Vaseline is not recommended) may help to relieve
some of the vaginal discomfort. It is important to discuss these issues with your gynecologist or BMT
doctor.
It is important to know that many of the symptoms listed here can be treated. If you have any of these
symptoms, talk to your doctor. Don’t suffer alone.
Fertility Issues
Chemotherapy and total body irradiation can cause temporary or permanent infertility. Infertility is the
inability to have children. Although rare, a few men and women have had children following treatment.
L/BMT Patient Education Manual • Chemotherapy Module
20
It is important for you to discuss contraception issues with your doctor prior to discharge as well as any
concerns you have regarding sexuality and fertility.
For Female Patients
Options for female patients include:
1.Freezing (cryopreservation) of fertilized eggs (ova), called zygotes, may be possible
prior to receiving high-dose therapy. Your BMT physician can discuss this in more
detail if you wish.
2.Use of donor eggs and in vitro fertilization (IVF) in the future
For Male Patients
Sperm banking is a process available that involves freezing and storing sperm in liquid nitrogen. This sperm
may be used at a later time for artificial insemination or in vitro fertilization (IVF). Sperm can be stored in
liquid nitrogen for up to ten years. This procedure depends on the sperm count and the quality of the sperm.
The patient’s underlying disease and exposure to chemotherapy or radiation can decrease sperm counts.
Patients interested in sperm banking should discuss this with their physician. For some patients, treatment
cannot be safely delayed and if the sperm count is low, sperm banking may not be possible. Patients should
discuss this with their physician if they have concerns or questions.
Sperm Banking – What to Expect
Ideally, three samples of ejaculate are taken. Appointments should be made at least 48 hours apart.
Abstaining from intercourse or ejaculation for at least 48 hours before each appointment will produce the
best sperm count. Collect the sample by masturbating. Avoid using any lubricants, including saliva, as they
can harm the sperm.
The first sample will be examined by the sperm bank laboratory to see whether it should be stored. The
semen is checked for amount, motility (the ability to move), and normal cell shape, before freezing and
after thawing.
Fertility Clinics
There are sperm banking facilities and fertility clinics in several Canadian cities, including Vancouver. Your
doctor or social worker can help you contact them.
Hair Loss (Alopecia)
Hair loss, also known as “alopecia”, occurs because the chemotherapy treatment affects the rapidly dividing
cells in the hair follicle. As a result, patients will lose most of their body hair. Areas affected will likely include
21
Managing Side Effects & Complications
the scalp, face, chest, arms, legs and pubic area.
What to Expect
Hair loss may be a difficult side effect to adjust to. It is a temporary side effect, with some exceptions.
Hair loss usually begins several days to a few weeks after chemotherapy has started. At this
time, most people notice a few more strands of hair on their pillow than usual. Once hair
Although
loss has begun, it will continue in a steady process. Similarly, when regrowth begins,
new hair will appear at a gradual, steady rate. Hair should begin to grow back several
hair loss
weeks to a few months after chemotherapy has ended. It is quite common for the
cannot be
new hair to be a different colour and texture.
prevented, there
Management
are many options
Because hair loss is a gradual process, some people decide to cut their hair short
to consider. Not
or shave their head if they find the loose strands a nuisance. Shampooing, brushing
everyone chooses
or combing will usually increase the rate of hair loss.
to cover tempoorary Although hair loss cannot be prevented, there are many options to consider. Many
baldness. Whatever people find that a stretchy cloth cap, scarves, baseball cap, hat, or wig can be
helpful during the period of hair loss. Some people arrange to purchase these items
you choose, it is
prior to coming to the hospital so they will be available when needed. Information
important that
about financial support for the purchase of a wig is available from the Canadian
you decided
Cancer Society. Not everyone chooses to cover temporary baldness. Whatever you
what feels
choose, it is important that you decide what feels right for you.
right for
Liver Effects
you.
The liver is responsible for “detoxifying” many of the drugs and chemicals that enter your
body. It may become damaged as a result of the chemotherapy drugs used to treat the disease.
The small vessels of the liver are very prone to a scarring process that is believed to be started by the highdose therapy given prior to blood and marrow transplant. This scarring process is known as veno-occlusive
disease or VOD.
VOD may occur in up to 50% of BMT patients. VOD shows up as tender, enlarged liver, yellowish
discoloration of the skin (jaundice) and weight gain due to fluid retention. Although VOD can potentially be
fatal, the liver has a huge capacity to recover from even severe damage.
Lung Effects
In BMT patients, the lung is a common area of infection. In addition, the lung is an organ that
L/BMT Patient Education Manual • Chemotherapy Module
22
It is critical
that you or
your local doctor
can be damaged by drugs or radiation. This is a frequent side effect
of the chemotherapy agent Carmustine (BCNU). BCNU is used for
contact your BMT
Hodgkin’s disease and non-Hodgkin’s lymphoma patients undergoing
doctor immediately
an autologous blood and marrow transplant. Side effects on the lung may also
if fever, cough and/
occur as a result of total body irradiation.
or shortness of breath
This condition may resemble an infection with cough, fever and shortness of
breath, but antibiotics are ineffective. It usually develops several weeks or
develop after returning
months following blood and marrow transplant, after the patient has been
home. Any delay in
discharged home from the hospital.
starting appropriate
Management
therapy may result
It is critical that you or your local doctor contact your BMT doctor immediately if
in a fatal outcome
fever, cough and/or shortness of breath develop after returning home.
for the
If treated early with steroid medication, the condition is curable. However, any delay
patient.
in starting appropriate therapy may result in a fatal outcome for the patient.
Male Sexuality
Sexual Desire & Intercourse
Chemotherapy agents are not known to directly affect desire, ejaculation or orgasm. For many
patients, however, decreased libido (desire) is common, but it is usually temporary. It may be due to
tiredness, weakness, a change in how you feel about your appearance, and a general feeling of illness.
Remember, sex requires extra energy! It is an individual thing, but it can take several months or more for
interest to return.
Due to chemotherapy or radiation therapy, semen may appear brown or orange. This is temporary. Patients
receiving chemotherapy should wear a condom during sexual intercourse, for up to seven days after the
last dose of chemotherapy as some drug by-products may be present in the ejaculate.
Following treatment, patients may resume sexual relations. Resuming relationships will take patience and
time. Communication with your partner is the key. Touching and caressing take much less energy than
sexual intercourse and can be just as intimate and satisfying.
Fertility
Chemotherapy, radiation therapy and active disease (cancer or infection) can cause temporary or permanent
infertility. Infertility is the inability to have children. Chemotherapy may lower the number of sperm cells,
reduce sperm cells’ ability to move or cause other abnormalities.
23
Managing Side Effects & Complications
Patients
While it is uncommon, some male patients recover their sperm production
receiving
after chemotherapy for two or more years post blood and marrow
chemotherapy should
transplant. This should be considered when engaging in unprotected sexual
wear a condom during
intercourse. For some patients, freezing (cryopreservation) of sperm, also
sexual intercourse, for up
known as sperm banking, before treatment begins may be an option. Talk
to your BMT doctor for more information.
to seven days after the last
Patients should report any concerns to the physician or nurse. Don’t
dose of chemotherapy as
suffer alone.
some drug by-products
may be present in the
Nausea & Vomiting
ejaculate.
Nausea/vomiting is a very common side effect with chemotherapy. There
are many different things that can trigger nausea such as motion, heartburn, food
or other odours, and feeling full after eating. It is important to keep track of these
triggers and to tell your doctor or nurse about them. This way, you can get the most effective anti-nausea
medication.
Management
Prior to receiving chemotherapy or total body irradiation, you will receive medications that are very
effective in minimizing nausea. These medications may be given by mouth, under the tongue, or through
your Hickman® line on a regular basis throughout the therapy. Some of the anti-nausea medications cause
a feeling of drowsiness and many patients find that they will nap quite frequently during this procedure.
Many different anti-nausea (also called anti-emetic) medications are available to you
throughout the course of your treatment. They can be prescribed for you based
It is
on your nausea/vomiting triggers.
important to
What You Can Do
keep track of things that
• Keep your mouth fresh by rinsing before and after
trigger nausea and to tell your
meals/snacks.
doctor or nurse about them.
• Eat small, more frequent meals/snacks
throughout the day.
This way, you can get the
• Take clear fluids such as juice, broth or jello rather
most effective anti-nausea
than a regular meal prior to chemotherapy or total
medication.
body irradiation.
• Avoid spicy, fried and greasy foods. Starchy, bland foods
are better tolerated. Try saltines, rice cakes, rusks, bread sticks, plain
L/BMT Patient Education Manual • Chemotherapy Module
24
toast, pretzels, bagels, noodles, rice, plain congee, plain roti or digestive cookies.
• Put some crackers or biscuits by your bedside and eat a little before you get up in
the morning may help.
• If food odours trigger your nausea, try foods that are cool/ cold. Reduce cooking
odours by using a kitchen fan and keeping pots covered.
• Choose foods based on how they will taste/feel coming back up. For example, soft
foods like jello and ice-cream might be easier on your throat compared to a harder
texture like chips.
• Eat whenever your appetite is the best.
• Learn some relaxation and distraction techniques that work well for you.
• Wear loose, comfortable clothing.
• If nausea is severe, rinse a facecloth with very cold water, wring it out and apply
to the face and the back of the neck. Continue rinsing with very cold water and
applying.
Neurologic Effects
High doses of the chemotherapy agent Cytarabine (“high-dose Ara-C” or “HIDAC”) is given to induce and
maintain a complete remission. This is a very effective drug in Acute Myelogenous Leukemia (AML) but it
can cause difficulties with the part of the brain, namely the cerebellum, that is responsible for coordination.
This is particularly observed in patients over the age of 60. This side effect is usually, but not always,
temporary. Patients on high-dose Cytarabine will have their handwriting monitored as a screening test for
cerebella dysfunction.
Patients who receive the chemotherapy agent Vincristine may experience numbness and tingling in the
fingers and toes. This is called peripheral neuropathy. This is also usually temporary. If symptoms are severe
or if the patient develops significant weakness of the hands and feet, Vincristine is discontinued.
In blood and marrow transplant patients, high-doses of the chemotherapy agent Busulfan may cause
seizures. Therefore, an anti-epilepsy medication, Dilantin, is given for one week prior to a blood and
marrow transplant to reduce the risk of seizure in patients receiving Busulfan.
Relapse
Unfortunately, patients having had chemotherapy or a blood and marrow transplant may still have a
recurrence of their underlying disease, despite the treatment. This usually occurs within the first two years
after chemotherapy or the blood and marrow transplant but, occasionally, occurs many years later.
25
Managing Side Effects & Complications
It is important to realize that a blood and marrow transplant does not always cure patients with cancer.
A second BMT is rarely beneficial for patients that have relapsed. However, further chemotherapy or
radiation may be helpful although not curative.
In certain situations, a boost of immune cells from the original donor’s blood may be extremely effective
in controlling recurrent cancer in a patient. This procedure is known as a Donor Leukocyte Infusion. If this
procedure is appropriate for your treatment, your BMT doctor will discuss this in detail with you.
Skin Rashes
Some skin changes that can occur during and after chemoradiotherapy include dryness, peeling, colour
changes, rashes and itchiness. Some of these changes, such as redness, are common with total body
irradiation, and disappear quite quickly. Others, such as rashes, can come and go throughout the treatment.
About two to three weeks after receiving total body irradiation, a bronze, sun-tanned appearance can
develop and may last for several months. This temporary darkening of the skin is also quite common in
blood and marrow transplant patients that have received Busulfan.
Management
It is difficult to provide specific information about skin reactions because there is a variety of possible
reactions and many causes. Your physician and nurses will provide you with more detailed information.
However, here are some general guidelines.
• Keep the skin clean and moist. Mild moisturisers are helpful, but avoid perfumed
soaps and toiletries.
• If you receive total body irradiation, you should sponge bath with tepid water only
and avoid the use of soap, moisturisers, and other toiletries during treatments and
for several days after receiving radiation.
• When you are discharged from hospital, minimize exposure to the sun. Following
a transplant, patients may be more sensitive to the sun. Exposure to direct sunlight
or damaging ultraviolet rays, even on cloudy days, could cause a flare up of skin
problems. This may be prevented by avoiding direct sunlight, wearing a widebrimmed hat and long sleeved clothing, and always wearing a sunscreen lotion of
SPF 15 or higher on exposed skin.
Sore Mouth & Throat (Mucositis)
Chemotherapy and/or infections can lead to a condition called mucositis. Mucositis is an inflammation of
the lining of your digestive tract and can lead to discomfort in the mouth, throat and the passage to the
L/BMT Patient Education Manual • Chemotherapy Module
26
stomach (esophagus).
Mucositis may last for several days and will usually get better around the time your blood cell counts begin
to recover. Common side effects include dryness, redness, sensitivity, sores, ulcers, and taste changes.
Management
The soreness in your mouth and throat can make it very difficult to eat. Here are some tips:
• Inform the doctor/nurse if you develop sores in your mouth. Medications are
available to help you with the pain and the sores.
• A regular mouth care routine will help minimize the discomfort. You will receive
instructions on mouth care from the staff from the Dentistry Department.
• Drink lots of fluids to help minimize mouth dryness. If your mouth is sore, cool or
room temperature drinks are often more soothing than hot ones. Try diluted sport
drinks, diluted juice and flat sodas instead of plain water.
• Avoid spicy or acidic drinks such as grapefruit or orange juice if your mouth is sore.
Instead, stick to bland foods and juices such as apple or grape.
• Choose foods that are soft, moist and easy to chew and swallow, such as ice-cream,
popsicles, smoothies, high protein/calorie drinks, pudding, etc.
• If you have a mumps-like parotid gland swelling (in the side of the neck) after total
body irradiation, you may find that applying ice packs to the throat will help. It may
be necessary for your BMT doctor to prescribe an analgesic until the swelling goes
away. The swelling usually goes away within 12–24 hours.
Taste Effects
Many patients undergoing treatment find that specific foods taste different. This may result from damage
to the cells in your mouth that help to detect taste. Taste changes (dysgeusia) may also occur if there is
decreased production of saliva in the mouth, causing a dry mouth (xerostomia).
Management
Taste changes are different for every person. Individual taste may change even daily and may last for several
weeks. Coping with taste changes can be very challenging. Here are some tips:
1.Keep trying different foods and you might find a new favourite. Keep a list of foods
that taste good to you.
2.Eat foods that taste good even if it means eating the same foods over and over
again. Ask the dietitian for some help to make sure you are getting all the proper
27
Managing Side Effects & Complications
nutrients you need.
3.Try eating foods at cold or at room temperature.
4.If food/meat tastes metallic, try marinating meat to hide the taste, using plastic
utensils instead of metal, using glassware instead of metallic cookware, eating other
protein rich foods instead of meat such as milk, canned fish, quiche, cottage cheese,
milkshakes, puddings, custard, yogurt, cheese, deviled eggs, and cold sliced meat.
5.If food tastes too sweet, mix juice/high protein high calorie supplement drinks with
water or milk, or add a pinch of salt to decrease the sweetness.
6.Good mouth care may help with taste changes; rinse your mouth throughout the
day especially before and after meals, brush your teeth and tongue with a soft
toothbrush.
7.For dry mouth, try the following foods to help stimulate your own saliva: lemonade,
orange juice, cranberry juice, sugar free citrus candies, pickles, and plain yogurt.
Avoid these foods if you have a sore mouth or throat.
Other Drugs
During the course of treatment and recovery, patients will be prescribed medications to help prevent and
manage the side effects of the treatment. Below is a list of commonly used drugs that your doctor may
prescribe.
Please note that not all of the following medications will be applicable to you. Depending on your reaction
to the medications, your doctor may use a different drug to help prevent or manage your side effects.
You may also refer to the BC Cancer Agency Drug Manual© at www.bccancer.bc.ca for a complete
drug guide.
Antibiotic
1.Ciprofloxacin (Cipro®)
2.Co-trimaxazole (Septra®)
Antifungal
1.Fluconazole
2.Itraconazole (Sporonox®)
3.Voriconazole (VFEND®)
L/BMT Patient Education Manual • Chemotherapy Module
28
Antinausea
1.Metoclopramide (Maxeran®)
2.Ondansetron (Zofran®)
3.Prochlorperazine (Stemetil®)
Antiviral
1.Valcyclovir (Valtrex®)
Steroid (Corticosteroid)/Anti-inflammatory
1.Dexamethasone (Decadron®)
2.Prednisone
29
Other Drugs
Notes
L/BMT Patient Education Manual • Chemotherapy Module
Disclaimer:
Please note that the information contained in this manual is not intended to replace the advice of your health care team.
Use this as a reference and education guide. Consult your health care team if you have any questions or concerns.
Leukemia / Bone Marrow Transplant (BMT)
Program of British Columbia
Mailing Address:
Leukemia/BMT Program Administration
10th Floor, 2775 Laurel Street
Vancouver, BC
V5Z 1M9
Telephone:
604-875-4863
Web Site:
www.leukemiabmtprogram.com
©2014 Leukemia/BMT Program of BC
Second Edition: January 2014