UNDERSTANDING
Autologous Bone Marrow
and
Stem Cell Transplantation
HERE'S
WHAT
YOU
SHOULD
KNOW
Introduction
You've just been told by your physician that
you have cancer... Multiple myeloma in fact.
You may have never heard of this particular
disease, but, from this moment on, it will take
center stage in your life.
Multiple Myeloma (MM) is a malignancy of
plasma cells. Plasma cells are antibody producing
cells normally present in the blood and
throughout the body. Myeloma is usually called
multiple myeloma because the malignant plasma
cells, or myeloma cells, accumulate and produce
areas of involvement in multiple areas of the bone
marrow.
How you gather information, learn about the
different options and deal with your diagnosis will
be important in the management of your
treatment.
The International Myeloma Foundation (IMF)
is a non profit foundation whose mission is to
improve the quality of life of myeloma patients
while working toward prevention and a cure. The
IMF believes that knowledge about your disease is
critical. Obtaining the latest information on the
treatment and management of myeloma will
help you take responsibility for managing your
treatment. Patients who learn about myeloma,
understand their treatment options, and form
partnerships with their doctors do better in
managing their disease and outcome.
1
Most general information regarding myeloma
can be found in our sister publication, "The
IMF Patient Handbook". An excellent source of
technical information can be found in, "The IMF:
A Concise Review of the Disease and Treatment
Options" prepared by Dr. Brian G. M. Durie.
Both of these booklets are available through the
IMF free of charge. Another important source of
information is the IMF's web page
www.myeloma.org.
Once you have done your homework and
become familiar with the different treatment
options, you may be considering an autologous
peripheral blood stem cell transplant (PBSCT)
as treatment for your disease. The preferred
treatment by many doctors is the peripheral
blood stem cell transplant (PBSCT), as it
allows for a faster recovery. In this brochure
we discuss what autologous transplantation is
and answer some commonly asked questions
regarding this procedure.
Many of the discussions in this brochure were
provided by myeloma patients like you who have
had experience with autologous transplantation.
Without them this patient guide would not have
been possible. We would like to thank all the
myeloma patients who have either had or are
considering an autologous transplant who
shared their insight with us.
2
Am I a Candidate for an
Autologous Transplant?
An autologous transplant is a treatment option
for myeloma patients, however it is not a cure.
It can improve the duration of remission and
provide a better quality of life for some
patients. A goal of transplantation is to provide
you with the longest remission time as possible.
Not all patients diagnosed with myeloma are
candidates for an autologous transplant. Many
factors must be taken into consideration. For
example, the type of myeloma, its progression,
aggressiveness and the responsiveness of the
disease to treatment are all important. We
cannot stress enough that myeloma is a highly
individualized disease. While there are
similarities between patients, each case has its
own distinct characteristics. Therefore, general
statements regarding patient outcomes both
during the transplant procedure and post
transplant are inappropriate.
There are several things to consider when
deciding if a transplant is the right treatment
option for you. For example, there are
prognostic factors, including your overall health
and age, that your doctor will take into
consideration before recommending a
transplant. There will be emphasis on kidney
and liver function. There will be testing to
determine how much myeloma there is in your
body and how aggressive it is. All of these
variables will be weighed before determining
whether a transplant is appropriate for you.
3
When to transplant is also an important
consideration. There is no clear cut clinical
data to suggest that transplantation earlier in
your treatment regimen is better than waiting
until later. Remember, in most cases, unlike a
heart attack, you do have the luxury of time to
do your homework and to gather all the
information and make an informed decision
about what's right for you. For example, you
could harvest your stem cells and save them for
a later treatment. This leaves you open to
other more immediate treatment options.
These are all things to discuss with your
doctor. It's important to remember that even if
you are a good transplant candidate, the
ultimate decision on whether or not to have a
transplant is yours.
What Is an
Autologous Transplant?
An autologous peripheral blood stem cell
transplant is a procedure that replenishes the
supply of normal cells that are destroyed by high
dose chemotherapy and/or radiation therapy.
In autologous transplantation, patients receive cells
collected from their bone marrow or blood prior to
receiving chemotherapy or radiation treatment.
The word autologous means that the blood is
collected from the patient, not from a relative or
a volunteer donor.
With high dose chemotherapy, patients receive
large doses of anticancer drugs in order to
destroy as many cancer cells as possible.
4
Although high dose chemotherapy is often very
effective, this treatment also destroys normal
cells in your blood and bone marrow.
Autologous transplantation provides
replacement of normal cells and "rescues" the
patient's immune system from the effect of
high dose chemotherapy or radiation
treatment.
Prior to administration of high dose
chemotherapy, the patient's blood or bone
marrow is harvested or collected so that their
stem cells can be re-infused after receiving
chemotherapy. A stem cell is the "mother cell"
that leads to the production of all the various
types of cells in the blood. New blood cells are
produced in the bone marrow.
Stem cells are very rare and powerful cells that
reside in the bone marrow and at lower levels in
peripheral blood, constituting only a small
fraction (less than 1%) of all the cells in the
marrow. Stem cells divide and grow to produce
three main types of mature cells found in your
blood:
Red Blood Cells
Stem Cell
White Blood Cells
Platelets
5
Red blood cells, which carry energy giving
oxygen from the lungs to the entire body,
White blood cells, which play an important role
in fighting bacteria and viruses that cause
infections; and
Platelets, which help blood to clot when bleeding
occurs.
High dose chemotherapy destroys not only the
tumor cells, but also stem cells in the bone
marrow and mature cells in the blood. The
reduced supply of blood cells can cause several
problems, including:
Infection from lack of white blood cells that
attack invading germs
Bleeding from lack of platelets that help the blood
to clot; and
Fatigue and difficulty breathing from lack of red
blood cells that carry oxygen throughout the body.
Fortunately, autologous transplantation makes it
possible to replenish the supply of normal stem
cells and blood cells lost during high dose
chemotherapy. Physicians re-infuse stem cells
harvested prior to the administration of high dose
chemotherapy or radiation, to restore the blood
production and immune systems of patients whose
bone marrow has been extensively damaged from
chemotherapy.
6
Autologous Transplant
Process
Autologous transplantation is a complex process
that can take weeks to months to complete.
The diagram above and the discussions that
follow illustrate the major steps involved in the
autologous transplant process. Many of these
steps will be performed as an outpatient while
other components of the transplant will require
hospitalization.
7
COLLECTION
Blood is harvested from the patient to collect stem
cells. Recent medical advances now make it possible
to collect stem cells from circulating blood as well.
Your doctor will explain which method of stem cell
collection- bone marrow or peripheral blood- is best
foryou.
· Collecting stem cells from bone
marrow
Collecting or harvesting bone marrow is usually
done in a hospital operating room under general
anesthesia. Using a hollow needle, a surgeon will
take bone marrow from several different areas of
the hipbones. The bone marrow is then frozen and
stored until high dose chemotherapy is completed.
In the majority of cases, the only side effect of the
procedure is some soreness in the hip area for a few
days.
· Collecting stem cells from
peripheral blood
Harvesting stem cells from the patient's blood,
often referred to as peripheral blood stem cells or
peripheral blood progenitor cells (PBPC) has
8
certain advantages over collecting stem cells from
bone marrow. No general anesthesia is needed for
this collection method, and it is done in an
outpatient setting so no overnight hospitalization
is necessary.
Because most stem cells reside in the bone
marrow, it is necessary to move stem cells from the
bone marrow to the bloodstream. This procedure
is called mobilization.
Prior to peripheral blood stem cell collection, your
physician may administer cytokines or colony
stimulating growth factors. These drugs are given
to mobilize or move stem cells from the bone
marrow to the circulating blood thereby allowing for
a greater harvest of stem cells.
Once a sufficient number of stem cells are
mobilized from the bone marrow into the
bloodstream, the patient's blood is collected using
a process called apheresis.
Prior to starting apheresis, a thin flexible plastic
tube called a catheter is inserted through the skin
and into a vein so that blood can be taken out.
The catheter is usually inserted into the chest just
below the collarbone. Insertion of the catheter is
usually done as an outpatient procedure, and only a
local anesthetic is needed. The site where the
catheter enters the skin may be sore for a few days,
which can be relieved with medications like
acetaminophen (Tylenol). The catheter may be
kept in place for several weeks, because it can be
used to give chemotherapy after stem cells have
been collected.
Once the catheter is in place, the patient, while
lying down, is connected to the apheresis machine
through the catheter. Blood is circulated through
9
the apheresis machine, which removes a fraction
of the blood containing the mobilized stem cells
and returns other blood cells back to the patient.
Patients usually do not need to be hospitalized for
apheresis, but most come in for one or two
sessions, lasting two to four hours each, in order to
ensure that enough stem cells are collected.
The most common side effects experienced
during apheresis are slight dizziness and tingling
sensations in the hands and feet. Less common
side effects include chills, tremors, and muscle
cramps. These side effects are temporary and are
caused by changes in the volume of the patient's
blood as it circulates in and out of the apheresis
machine, as well as by blood thinners added to
keep the blood from clotting during apheresis.
PROCESSING STEM CELLS
After collection, the bone marrow or peripheral
blood is taken to the processing laboratory, which
is usually located within the hospital or local
blood bank. In the processing laboratory, the bone
marrow or blood cells are prepared for freezing
(cryopreservation). The processing laboratory may
also use additional procedures to select stem cells
and remove tumor cells.
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Harvested Blood or Bone Marrow
(1-2% Stem Cells)
Stem Cell
Concentration
Concentrated
Non-target
Stem Cells
Cells
The purification process used to concentrate stem cells
cannot recognize tumor cells and therefore does not
include them in the concentrated product.
STEM CELL SELECTION
Autologous bone marrow and peripheral blood
stem cell transplantation often carries the risk
that some tumor cells will be re-infused back into
the patient following high dose chemotherapy.
With the advent of highly sensitive detection
methods, the presence of contaminating tumor
cells in bone marrow and mobilized peripheral
blood is well documented. In an attempt to
minimize tumor contamination in autologous
11
transplants, investigators have pursued a number
of methods for eradicating or purging tumor cells
from bone marrow and blood. Stem cell selection
is one method used for purging tumor cells.
Recent clinical studies have demonstrated that
stem cell selection reduces the tumor
contamination found in mobilized blood. This is
possible because stem cells have unique
properties not shared by tumor cells.
The long term clinical benefit of eliminating
tumor contamination has not been determined
in randomized clinical trials. However,
preliminary evidence suggests that eliminating
tumor contamination may be beneficial. Gertz,
et. al. demonstrated that contaminating tumor
cells in peripheral blood collected from patients
with multiple myeloma are associated with
shortened relapse-free survival after
transplantation. However, this may not be a
direct effect of the contaminating myeloma cells,
but more related to the aggressive nature of the
underlying myeloma in such patients. Many
experts believe that tumor purging alone may
not improve patient outcomes, but when
combined with other therapies, both pre and
post transplant, it may contribute to increased
disease free survival.
Studies are ongoing to evaluate the benefit of
removing tumor cells from the collected stem cells
prior to infusion in the patient.
12
CRYOPRESERVATION
After collection, the blood is cryopreserved
(frozen). The blood must be preserved to keep the
stem cells alive until it is time to re-infuse them
back into the patient's bloodstream. The cells are
frozen and stored in liquid nitrogen. They can be
stored frozen for as long as necessary. There is
some deterioration with time, but excellent
function of stem cells is retained for at least 10
years.
ADMINISTERING HIGH
DOSE CHEMOTHERAPY OR
RADIATION THERAPY
After the stem cells are frozen and stored, the
patient is ready to receive high dose
chemotherapy. Sometimes called dose intensive
13
chemotherapy, this treatment is designed to destroy
cancer cells more effectively than standard
chemotherapy. The purpose of high dose
chemotherapy is to kill tumor cells inside the
patient's body. Depending on the type of cancer
and other factors, some patients may receive one or
more cycles of chemotherapy, possibly in
combination with radiation therapy, over a period
of several days.
The kind of high dose chemotherapy or radiation
treatment a patient receives depends on a number
of factors, such as the type of cancer and how far
advanced it is. Some patients may need only one
cycle of treatment, while others may require several
cycles with rest periods in between.
High dose chemotherapy can cause severe side
effects, which may require that some patients be
admitted to the hospital for treatment.
Shortly before starting chemotherapy, patients
usually are given large amounts of fluid to prevent
dehydration and kidney damage from the
chemotherapy. Medications designed to prevent or
lessen some of the expected side effects of
treatment are also given.
Some of the more common side effects of
chemotherapy include nausea, vomiting, diarrhea,
mouth sores, skin rashes, hair loss, fever or chills
and infection. Patients are very closely monitored
during the high dose chemotherapy administration.
Monitoring includes daily weight measurement, as
well as frequent measurements of blood pressure,
heart rate, and temperature. During this period
patients will feel helpless and very fatigued. Having
a family support network is very important during
this period.
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RE-INFUSION
After chemotherapy is administered, the patient's
stem cells are thawed and given back to them.
This procedure is often referred to as the
transplant. Within a few days after completing
the high dose chemotherapy, the stored stem cells
are transplanted, or re-infused into the patient's
bloodstream. The re-infusion process is similar to
a blood transfusion and takes place in the patient's
room: it is not a surgical procedure. The frozen
bags of bone marrow or blood cells are thawed in a
warm water bath, and then injected into the
bloodstream through the catheter. It usually takes
2-4 hours for the infusion. Infused stem cells
travel through the bloodstream, and eventually, to
the bone marrow, where they begin to produce
new white blood cells, red blood cells, and
platelets.
ENGRAFTMENT AND
RECOVERY
During the first 2 - 3 weeks after transplantation,
the re-infused stem cells migrate to the bone
marrow and begin the process of producing
replacement blood cells, a process called
engraftment. Until engraftment is complete, the
patient is susceptible to infection and bleeding
15
caused by low blood cell counts. Therefore, special
precautions are necessary during recovery. Since
the patient's immune system is very weak, patients
will remain in the hospital for at least several days
to a week until platelet and white blood cell
counts are improving to a safe level for the patient
to be discharged. With close monitoring the
patient can be out of the hospital during the
recovery period.
The long weeks of waiting for the transplanted
stem cells to engraft, for blood counts to return to
safe levels and for side effects to disappear increase
the emotional trauma felt by a patient. Recovery
can be like a roller coaster ride: one day a patient
may feel much better, only to awake the next day
feeling as sick as ever. It is important during this
period to take things one day at a time.
After being discharged from the hospital, a
patient continues recovery at home for two to four
months. Patients usually cannot return to full-
time work for up to six months after the
transplant. Although patients may be well enough
to leave the hospital, their recovery will be far
16
from over. For the first several weeks the patient
may be too weak to do much more than sleep, sit
up and walk a little around the house. Frequent
visits to the hospital will be required to monitor
the patient's progress. It can take six months or
more before a patient is ready to fully resume
normal activities.
Until engraftment of the stem cells takes place,
patients are very susceptible to developing
infections. Even a minor infection like the
common cold, can lead to serious problems
because the body's immune system is so weakened
by the effects of the high dose chemotherapy and
the loss of blood cells.
PREVENTING INFECTION
Patients may be given red blood cell and platelet
transfusions during the recovery period to help
prevent anemia and bleeding.
Antibiotics are often prescribed to help prevent
infection.
Visitors may be asked to wear masks and gloves to
minimize contact with the patient.
Fresh fruits, vegetables and flowers may be
prohibited from the patient's room as these can
carry bacteria and fungi.
If infection and fever occur, the patient may be
admitted to the hospital and given intravenous
antibiotics.
Each medical center has its own specific
guidelines for patient care, including removal of
the catheter, during recovery. The health care
team will explain these guidelines to patients and
family members.
17
SUMMARY
High dose chemotherapy and autologous
transplantation can place an enormous stress on
patients and families. Physical, psychological,
emotional and financial stresses can be
overwhelming. Patients and families may
experience feelings of anger, depression, and
anxiety over an unknown future and a lack of
control. Support services offered through the
hospital and many other organizations are very
important during this time.
Questions and Answers
About Bone Marrow
and Stem Cell
Transplantation
Listed below are some of the questions asked most
often by people living with multiple myeloma and
who have had or are considering a stem cell
transplant. You should discuss these questions and
other concerns with your doctor and members of
your health care team before making any final
decisions about how to treat your disease.
Q Why is a stem cell transplant necessary
for a multiple myeloma patient?
A The transplant procedure allows you to receive
treatment that would otherwise prove fatal.
Typically, transplantation therapy involves
extremely high doses of chemotherapy, with or
without total body radiation therapy. This
therapy is so potent that it destroys all your
bone marrow. Without bone marrow, the body
is unable to manufacture blood cells needed to
carry oxygen and defend against infection.
Therefore, a bone marrow or peripheral blood
18
stem cell transplant replaces the destroyed
marrow, rescuing the patient from the effects of
high dose chemotherapy and/or radiation.
Q Am I a candidate for bone marrow or
peripheral blood stem cell transplant?
A Medical experts have yet to arrive at a set of
fixed guidelines for selecting patients who will
benefit the most from a transplant.
Increasingly accepted as a part of multiple
myeloma treatment protocols, successful
transplantation is a function of the patient's
age, general physical condition, stage of
disease, and responsiveness to prior treatments.
Only your physician can provide you with the
best assessment of your chances for long-term
survival.
Q Does taking alkylating agents such as
melphalan, busulphan, and cytoxan
reduce my suitability for a transplant?
A Alkylating agents are one of the most effective
ways of reducing tumor burden (tumor cells
inside your body). However, their prolonged
use more than one year will reduce your
doctor's ability to easily harvest your stem cells.
Therefore, if you're considering a transplant,
you should talk with your doctor first about
your total treatment plan to ensure that you
have as many short term and long term
treatment options available to you as possible.
It should be emphasized, however, that
collection should initially be done before using
any alkylating agents.
Q How do I select a transplant center?
A A transplant is a complicated medical
procedure that requires an expert team of
19
doctors, nurses, social workers,
psychologists, and allied health
professionals who understand the procedure,
have performed it successfully many times, and
are equipped to respond when medical and
emotional problems arise. Today, medical
centers that meet these criteria can be found
throughout the country. Many of these centers
specialize in treating patients with many
different types of cancer. To find the one best
suited for patients with multiple myeloma, you
should talk with your doctor, multiple myeloma
patients, and the International Myeloma
Foundation.
Q What goes on at a transplant center?
A To understand what goes on at a transplant
center, we strongly suggest that you visit one.
Meet with the staff doctors, nurses and other
members of the multiple myeloma treatment
team and learn more about how they
approach a transplant. See the room where
your transplant will occur and where you'll be
spending your recuperation time. Find out
what part of your procedure will be performed
in a clinic or a doctor's office and what part will
be done in the hospital. You should be
comfortable with the center before you begin
your transplant.
Q If my doctor agrees that bone marrow
or peripheral blood stem cell
transplant is an appropriate treatment
for my disease, what can I do now to
prepare for the experience?
A You can do a lot to get ready for your
transplant. By reading this brochure, you've
20
already taken the most important step:
learning as much as you can about the
procedure. Talk with your doctor, seek out
fellow survivors, and read as much as you can,
including the publications and newsletters from
the International Myeloma Foundation. Ask
questions about what you've learned and strive
to read all the newest information coming from
research. Bring a tape recorder or a friend with
you to the doctor's office so that you can give
your full attention to your doctor. Share what
you know with your family and loved ones so
that they will know what to expect and how
they can help you in the weeks and months
ahead.
Your doctor will perform a series of tests to
confirm that you are well enough to stand up to
the trauma of a transplant. All the data
gathered on the performance of your heart, lung,
kidneys, and your other vital organs will enable
your doctor to compare your health before and
after the procedure. In most cases, you won't
have to be hospitalized for these tests since they
can be performed in your doctor's office.
Q What side effects should I anticipate
from the transplant?
A Side effects can be expected from every type of
medical treatment, even the use of aspirin.
Each patient reacts differently to chemotherapy
and other drugs they are given during the
transplant. No two patients share exactly the
same side effect profile.
Nonetheless, you should know that many
multiple myeloma patients suffer from frequent
bacterial infections. These infections can be
21
life threatening. Drugs are available which
stimulate the production of white blood
cells that fight infections. Some patients
develop leukemia, which prevent their body
from producing life-saving bone marrow.
Q What happens during re-infusion?
A After chemotherapy and perhaps radiation
therapy you will receive a re-infusion of your
own bone marrow or stem cells. Your stem
cells will be thawed. Once this is done, a
health care provider will draw the liquid from
the bags into a syringe, connect the syringe to
your catheter and push the liquid into the
catheter. While the re-infusion takes place you
may feel warm or lightheaded. The chemical
used to keep your bone marrow and stem cells
fresh has a garlic smell that you might be able
to taste. Your doctor may re-prescribe or adjust
your medication to make you feel more
comfortable during this procedure.
Q Can I die from the transplant itself?
A No surgical procedure is without risk, and a
transplant for multiple myeloma patients is
riskier than most. Nonetheless, medical studies
have shown that 90-95% of all autologous
transplanted patients survive transplant.
Q Can I relapse after a transplant?
A Yes. Unfortunately, the majority (at least 50%) of
all multiple myeloma patients relapsed 18 to 36
months after their transplant was completed.
Q I've heard a lot about tumor purging?
Can it help me?
A The process of purging removes tumor cells from
22
peripheral blood or bone marrow taken from
your body prior to transplant. High dose
chemotherapy is used to kill tumor cells that
are within your body. Stem cell selection is
used to remove tumor cells from your
autograft (bone marrow or peripheral blood
stem cells removed from your body prior to
the transplant). The goal of this strategy is
to reduce the number of tumor cells both
within your body as well as in the bone
marrow or peripheral blood that will be re-
infused back into you. Some experts believe
that may extend the time to relapse. Your
doctor can give you further guidance about
whether purging is right for you.
Q How long will I stay in the hospital?
A You will stay in the hospital for about 2
weeks or less. The length of stay varies
from patient to patient. Some patients may
have several short admissions.
Q When will my stem cells start to grow
again?
A Stem cells start to grow back or "engraft"
within 12 - 15 days after re-infusion.
Q What will my quality of life be after
transplant?
A On average, patients take three to six months
to recover from a transplant. By this time, your
immune system can once again fight infections
because your bone marrow is producing healthy
blood cells. Your hair will grow back, but your
taste buds might still be a little quirky. Foods
that tasted good to you before a transplant
might not taste good now. However, in most
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cases, you should be able to return to
normal daily activities. It can take as long
as a year to recover normal functioning.
Remember to take one day at a time. You
will have good days and bad days, and they
won't necessarily come in that order.
Prepare yourself to feel differently each day
during the recovery process.
Q Should I expect changes in my
emotions?
A Yes. Transplant is more than just a medical
procedure. Because it forces you to rely on your
doctor and other members of your treatment
team as well as your family and friends, you will
likely lose your sense of independence and
control. Feelings of isolation and helplessness
are common to transplant patients. You and
your loved ones should seek assistance from a
trained professional who has experience in
counseling. Help may also be found through
patient support groups.
Q What alternative and complementary
therapies can I take during and after
my transplant?
A Some patients believe that alternative and
complimentary therapies are an important part
of their treatment program. Because all drugs,
synthetic and natural, interact creating
unanticipated side effects, you should always
consult with your doctor about their use. Be
sure to tell your doctor the names of all the
alternative and complimentary therapies you
are using so that he or she can adjust your
regimen accordingly. It is important to note
that even seemingly innocuous over-the-
24
counter drugs, e.g., ibuprofen, may be
harmful to a myeloma patient.
Questions forYour
Doctor:
These are questions we suggest you discuss with
your doctor to help you better understand the
transplant procedure and how it will affect your
life. Space is provided for you to make notes:
"Am I a candidate for stem cell transplant?"
"What does high dose chemotherapy with
transplant hope to achieve that can't be achieved
by standard chemotherapy?"
"What treatment protocols are there at your
institution and how do you decide which one is
right for me?"
"Does taking alkylating agents such as
melphalan, busulphan and cytoxan reduce my
suitability for a transplant?"
"How do I select a transplant center?"
"How many transplants has this center
performed for multiple myeloma and what are
the success rates?"
"How long do patients transplanted in your
center live after the transplant itself? How does
this compare with national averages?"
"Will you be the doctor who performs the
transplant and who are the other members of
the team?"
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"Will you be the doctor who provides my
ongoing care?"
"What goes on at a transplant center?"
"If we decide that transplant is an appropriate
treatment for my disease, what can I do now to
prepare for the procedure?"
"When does the transplant procedure begin?"
"What drugs will be prescribed for use before,
during and after the transplant? What do they
do and what are their side effects?
"Is total body irradiation (TBI) a part of the
treatment plan? What are the pros and cons of
this therapy?"
"How long is the entire treatment cycle, from
preparation for the transplant to recovery?"
"How long will I have to be in the hospital? How
often are my follow up visits going to be?"
"How will the transplant procedure effect my
ability to function? How can I expect to feel
during and after the transplant?"
"What side effects of my transplant should I
anticipate?"
"What are the risks? Can I die from the
transplant itself?"
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"What is stem cell selection and will it be a part
of my transplant procedure"
Support Services and
Resource Guide for
Patients and Families
This brochure is published by the International
Myeloma Foundation.
International Myeloma Foundation
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
U.S.A
(800) 452-CURE (2873)
(818) 487-7455
(818) 487-7454 Fax
E-Mail: TheIMF@myeloma.org
www.myeloma.org
The role of high dose chemotherapy with
transplantation as a treatment option for myeloma
patients is always included in the seminar agenda.
HOW CAN THE IMF
HELPYOU?
(800) 452-CURE
The IMF Hotline, toll-free in the US and
Canada, provides immediate support and
information.
INTERNET ACCESS
At www.myeloma.org , you'll find 24-hour access
to in-depth information about multiple myeloma
as well as information about the IMF and our
education and support programs.
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INFORMATION PACKAGE
The IMF Info Pack provides comprehensive
information on treatment options and disease
management. Available free of charge, the Info
Pack includes The IMF Patient Handbook and
The IMF Concise Review of the Disease and
Treatment Options as well as information on
other IMF publications and services.
MYELOMA TODAY
Stay in the loop with this IMF newsletter that
covers a broad range of topics, offering up-to-
date information of use to both patients and
physicians.
SUPPORT GROUPS
The IMF works with a network of more than 50
multiple myeloma support groups from around
the world. To find the support group nearest
you, contact the IMF.
ONLINE MYELOMA FORUM
The IMF Internet Discussion Group hosts an
online support group where users can log on and
share thoughts and experiences. Visit
www.myeloma.org to access this forum.
PATIENT-TO-PATIENT
DIRECTORY
The IMF maintains a confidential worldwide
directory of patients and family members that
can help put you in touch with IMFers in your
area.
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PATIENT & FAMILY
SEMINARS
The IMF holds educational Patients & Family
Seminars in cities around the world. These
meetings enable patients and their families to
learn about the latest developments in myeloma
from a panel of world-renowned myeloma
experts. The role of high dose chemotherapy
with transplantation as a treatment option for
myeloma patients is always included in the
seminar agenda. The IMF Patient & Family
Seminars are also a great opportunity to meet
others touched by myeloma.
RESEARCH
The IMF research grant program, which funds
both junior and senior investigators, is designed
to increase the number of researchers working
on a cure for myeloma. Created in memory of
IMF founder Brian D. Novis, the grants support
research into better treatment, management,
prevention and ultimately, a cure for myeloma.
PHYSICIAN SERVICES
The IMF organizes Clinical Conferences, Expert
Research Roundtables and Scientific Workshops
to keep physicians and researchers abreast of
advances in the field of myeloma. Several IMF
programs offer Continuing Medical Education
(CME) credit.
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Other Groups
In addition to the IMF that can provide you
with helpful information.
The IMF applauds the efforts of these
independent groups.
American Cancer Society
Patient Service Department
1559 Clifton Road NE
Atlanta, GA 30329-4251
(800) 227-2345
www.cancer.org
Bone Marrow Transplant
Newsletter
1985 Spruce Avenue
Highland Park, IL 60035
(847) 831-1913
www.bmtnews.org
National Cancer Institute
Cancer Information Service
Building 31, Room 10A07
9000 Rockville Pike
Boy Scout Building, Room 340
Bethesda, MD 20892
(800) 422-6327
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Glossary
Alkylating Agent - A chemotherapeutic agent
such as melphalan (Alkeran) or
cyclophosphamide (Cytoxan). Alkylating refers
to the way in which these agents cross-link the
DNA of myeloma cells and block cell division.
Anemia - A decrease in the normal number of red
blood cells, usually below 10 G/dl with over 13 -
14 G/dl being normal. Myeloma in the bone
marrow blocks red cell production causing anemia
(shortness of breath, weakness and tiredness).
Antibodies - Proteins produced by white blood
cells to fight infection and disease.
Apheresis - Sometimes called leukapheresis,
apheresis is a procedure in which blood is taken
from a donor and a portion of the blood
containing plasma, white blood cells, and platelets
is separated. Red blood cells are transfused back
into the donor. The portion containing white
blood cells contains the rare stem cells.
Autologous Bone Marrow Transplantation - A
procedure in which a patient's bone marrow is
collected, stored, and re-infused following high-
dose chemotherapy.
Autologous Peripheral Blood Transplantation -
A procedure in which a patient's blood is
collected by apheresis, stored, and re-infused
following high-dose chemotherapy.
Beta 2 Microglobulin - A small protein found in
the blood. High levels occur in patients with
active myeloma. Low or normal levels occur
in patients with early myeloma and/or inactive
disease. Approximately 10% of patients have
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myeloma which does not produce beta 2
microglobulin. For these patients, beta 2
microglobulin testing cannot be used to monitor
the disease. At the time of relapse, beta 2
microglobulin can increase before there is any
change in the myeloma protein level. Therefore,
90% of the time, beta 2 testing is very useful for
determining disease activity.
Bone Marrow Aspiration - The removal, by
needle, of a sample of tissue from the bone
marrow.
Creatinine - A small chemical compound
normally excreted by the kidney. If the kidneys
are damaged, the serum level of creatinine
builds up resulting in elevated serum
creatinine. The serum creatinine test is used to
measure kidney function.
Colony-Stimulating Factor (CSF) - Proteins that
stimulate the development and growth of blood
cells. Filgrastim (Neupogen) is a colony-
stimulating factor that is used to mobilize stem
cells from the bone marrow into the bloodstream
prior to apheresis.
Engraftment - The process in which stem cells in
the transplanted bone marrow or peripheral blood
migrate to the patient's bone marrow and begin to
grow and produce new white blood cells, red
blood cells, and platelets
Hematopoiesis - The formation and development
of blood cells in the bone marrow.
Immune System - The function of a number of
related body organs that protect the body from
disease organisms, other foreign bodies and
cancers.
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Lymphocytes - Small white blood cells
produced in the lymphoid organs (the lymph
nodes, spleen, thymus and tonsils), which are
essential to normal function of the immune
system.
Myeloablation - The killing of bone marrow by
radiation or chemotherapy. This term usually
refers to the complete or near-complete
destruction of the bone marrow.
Neutropenia - A below-normal number of
neutrophils. Neutropenia (low neutrophils) can
be prevented or reduced using a synthetic
hormone called GCSF (e.g. Neupogen).
Neutrophil - A type of white blood cell that
functions to destroy bacteria. Neutrophils are
necessary to combat bacterial infection.
Neutrophils can drop to very low levels following
chemotherapy.
Peripheral Blood Stem Cell (PBSC) - Stem cells
collected from the blood. These cells are similar to
stem cells found in the bone marrow. The term
"peripheral" means that the cells come from blood
outside of the marrow.
Platelets - Granule-containing cellular
fragments critical for blood clotting and
sealing off wounds. Platelets also contribute to
the immune response.
Remission or Response - Remission and
response are used interchangeably. Complete
Remission (CR) is the common abbreviation
for both. CR is the absence of myeloma
protein from serum and/or urine by standard
testing; absence of myeloma cells from the
bone marrow and /or other areas of myeloma
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involvement; clinical remission and
improvement of other laboratory parameters
to normal.
Stem Cell - Normal stem cells give rise to
normal blood components, including red cells,
white cells and platelets. Stem cells are
normally located in the bone marrow and can
be harvested for a transplant.
Stem Cell Selection - A cell processing
technology that is used to obtain a stem cell
enriched product and thereby reducing cancer
cells in the transplant.
Total Body Irradiation (TBI) - A technique
whereby radiation is administered to all bone
marrow sites which may contain myeloma.
Critical body organs (e.g. kidneys) are shielded
with lead during the TBI procedure.
Transplantation - Stem cells are used to rescue
the patient's blood-forming potential following a
very high dose chemotherapy and/or radiation
treatment. Transplant is not a treatment but a
method of support to make high dose
chemotherapy treatment possible.
White Blood Cell - One of the three major cell
types in the blood. There are several types of
white cells (i.e. neutrophils, lymphocytes and
monocytes).
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INTERNATIONAL MYELOMA FOUNDATION
UNITED STATES OF AMERICA
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
U.S.A.
(800) 452-CURE
(818) 487-7455
(818) 487-7454 Fax
E-Mail: TheIMF@myeloma.org
Website: www.myeloma.org
UNITED KINGDOM
9 Gayfield Square
Edinburgh EH1-3NT
U.K.
0131-557-3332
0131-556-9720 Fax
E-Mail: TheIMF@myeloma.org.uk
Website: www.myeloma.org.uk