A Guide for Patients,
Caregivers, and
Loved Ones
Understanding
The Stem Cell
Transplantation
Process
Understanding
The Stem Cell Transplantation Process
This patient guide is supported through
unrestricted educational grants from:
Contact the Lymphoma Research Foundation
Helpline: (800) 500-9976
Website: lymphoma.org
July 2018
Lymphoma Research Foundation
(LRF) Helpline and Clinical Trials
Information Service
CONTACT THE
LRF HELPLINE
Trained staff are available to answer questions
and provide support to patients, caregivers and
healthcare professionals in any language.
Our support services include:
• Information on lymphoma, treatment options,
side effect management and current research
fi ndings
• Financial assistance for eligible patients and
referrals for additional fi nancial, legal and
insurance help
• Clinical trial searches based on patient’s
diagnosis and treatment history
• Support through LRF’s Lymphoma Support
Network, a national one-to one volunteer
patient peer program
Monday through Friday, Toll-Free (800) 500-9976
or email [email protected]
MOBILE APP
The Lymphoma Research Foundation’s
mobile app, Focus on Lymphoma, is a
great tool and resource for lymphoma
patients to manage their disease.
Focus on Lymphoma is the fi rst mobile
app that provides patients and
caregivers comprehensive content
based on their lymphoma subtype and tools to help manage their diagnosis,
including a medication manager, doctor sessions tool and side effects tracker.
For further information on LRF’s award winning mobile app or any of our
programs and services, call the LRF Helpline toll free (800) 500-9976,
email helpline@lymphoma.org or visit us at lymphoma.org.
The Focus on Lymphoma mobile app was recently named Best App by PR News and
is available for free download for iOS and Android devices in the Apple App Store
and Google Play.
FOCUS ON LYMPHOMA
A Guide for Patients, Caregivers, and Loved Ones
July 2018
This guide is an educational resource compiled by the Lymphoma Research
Foundation to provide general information on stem cell transplantation.
Publication of this information is not intended to replace individualized
medical care or the advice of a patient’s doctor. Patients are strongly
encouraged to talk to their doctors for complete information on how their
disease should be diagnosed, treated, and followed. Before having a stem
cell transplant, patients should discuss the potential benets and side effects
of this treatment with their physician.
This patient guide is supported through unrestricted educational grants from:
© 2018 Lymphoma Research Foundation.
Information contained herein is the property of the Lymphoma Research Foundation (LRF). Any portion may
be reprinted or reproduced provided that LRF is acknowledged to be the source and the Foundation’s website
(lymphoma.org) is included in the citation.
Understanding
The Stem Cell
Transplantation Process
Contact the Lymphoma Research Foundation
Helpline: (800) 500-9976
Website: lymphoma.org
ii
Understanding The Stem Cell Transplantation Process
ACKNOWLEDGMENTS
The Lymphoma Research Foundation (LRF) wishes to acknowledge those
individuals listed below who have given generously of their time and
expertise. We thank them for their contributions, editorial input, and advice,
which have truly enhanced this booklet. The review committee guided the
content and development of this publication. Without their dedication and
efforts, this publication would not have been possible. We hope those in the
lymphoma community will now be better informed and have a better
understanding of the steps and considerations for a stem cell transplant
because of the gracious efforts of those involved in the planning and
execution of this guide.
Review Committee
Stephen M. Ansell, MD, PhD, Mayo Clinic, Rochester
Christopher R. Flowers, MD, MS, Winship Cancer Institute of Emory
University
Henry C. Fung, MD, FACP, FRCPE, Fox Chase Cancer Center
Thomas M. Habermann, MD, Mayo Clinic, Rochester
Ann S. LaCasce, MD, MMSc, Dana-Farber Cancer Institute
Yago Nieto, MD, PhD, The University of Texas MD Anderson Cancer
Center
Cecilia Blanca Rosand, PA-C, Winship Cancer Institute of Emory
University
Sonali M. Smith, MD, The University of Chicago Medicine
Michele Walsh, DNP, Dana-Farber Cancer Institute
Lymphoma Patient, Caregiver, and Advocacy Advisors
Tom Bolger
Rose Colella
Jackie Foster, MPH, RN, Be The Match
Meghan Gutierrez, Lymphoma Research Foundation
Jeff Iredell
Izumi Nakano, Lymphoma Research Foundation
Maressa Williams
iii
Understanding The Stem Cell Transplantation Process
TABLE OF CONTENTS
Introduction and Glossary ..................................... 1
Part 1 — Concepts and Considerations Before Stem Cell
Transplant in Lymphoma .................................. 4
Chapter 1: The Basics of Stem Cell Transplantation in Lymphoma . 4
Chapter 2: Treatment Options in Stem Cell Transplantation ...... 9
Part 2 — The Procedure of Stem Cell
Transplantation .......................................... 18
Chapter 3: The Stem Cell Transplantation Process ............. 18
Part 3 — After The Transplant ............................ 29
Chapter 4: Engraftment and Post-Engraftment Periods ......... 29
Chapter 5: Transplant Survivorship .......................... 36
Part 4 — Other Considerations and Resources ........... 39
Chapter 6: The Caregiver’s Role ............................ 39
Chapter 7: Enrolling in a Clinical Trial ........................ 43
Chapter 8: Transplant Expenses, Medical Coverage, and Financial
Support ................................................. 46
Chapter 9: Resources ..................................... 48
A Transplant Journey Checklist .......................... 48
Lymphoma Care Plan ................................... 52
About The Lymphoma Research Foundation .................... 53
1
Understanding The Stem Cell Transplantation Process
INTRODUCTION
There are many factors for patients and their loved ones to consider when
deciding whether or not a stem cell transplant as part of lymphoma treatment
is the appropriate treatment decision for them. This booklet is designed to
help patients with lymphoma and their caregivers become familiar with the
stem cell transplantation process and to become active participants in their
healthcare decision-making. The booklet is divided into several sections,
highlighting the pertinent issues that patients need to know before
(Part 1), at the time of (Part 2), and after (Part 3) having a transplant, as
well as other considerations (Part 4). Our goal is to provide information
and helpful tips that can assist patients on their journey. In addition to this
resource, information is available online at the Lymphoma Research
Foundation’s (LRF’s) website at lymphoma.org. The LRF Helpline can also
provide additional information and copies of LRF educational and support
publications. For Helpline assistance, call (800) 500-9976 or email
GLOSSARY
allogeneic
transplant
a type of stem cell transplant in which the stem cells a patient receives
come from a donor who is either a closely related family member or a
well-matched unrelated person
anemia a condition marked by low levels of red blood cells; symptoms can
include feeling tired, weak, low energy, cold, short of breath, dizzy, and/
or confused
antimicrobials medications that ght infections by various kinds of microorganisms,
including bacteria (antibiotics), viruses (antivirals), and fungi
(antifungals)
apheresis a process in which whole blood is removed from a vein, a certain type
of cell (such as stem cells) is ltered out and collected, and the rest of
the blood is returned to the vein of the patient or donor
autologous
transplant
a type of stem cell transplant in which the patient receives his or her
own stem cells, collected several weeks before the transplant
bone marrow the soft, spongy tissue inside bones that contains stem cells and makes
blood cells
2
Introduction and Glossary
chimerism the state of having two different individuals’ cells living in a single
body; can occur after an allogeneic transplant or a reduced-intensity
transplant if some of the patient’s stem cells are still alive and mixed in
with the donor’s stem cells
collection the process of obtaining stem cells for a transplant, either by harvesting
them from bone marrow or by ltering them out of the blood through
stem cell apheresis
conditioning (also
called preparatory
regimen)
cancer treatment (usually high-dose chemotherapy with or without
radiation) given just before infusion of stem cells
engraftment the process in which transplanted stem cells move into the recipient’s
bone marrow, multiply, and start making new blood cells
fatigue weariness or tiredness
graft-versus-host
disease (GVHD)
a complication of an allogeneic stem cell transplant in which the
transplanted stem cells attack the healthy cells in the patient’s body
such as the skin, gastrointestinal tract, etc.
graft-versus-
lymphoma (GVL)
effect
a benet of an allogeneic stem cell transplant in which the donor’s stem
cells attack and kill any remaining cancerous cells
granulocyte
colony-stimulating
factors (G-CSF)
medications that can stimulate stem cells to move out of the bone
marrow and into the bloodstream (e.g., lgrastim, lenograstim, and
peglgrastim)
haploidentical half-matched; used to describe a type of allogeneic stem cell donation
in which only half of the cells are matched between the donor and the
recipient
harvesting the process of collecting stem cells from bone marrow that will be
used for transplant; cells are harvested from either the patient (in an
autologous transplant) or the donor (in an allogeneic transplant)
hematologist–
oncologist
a doctor who specializes in the treatment of blood disorders, including
blood cancers such as lymphoma
hematopoietic
stem cells
immature cells that can develop into any type of blood cell; most live in
the bone marrow, but some are found in the bloodstream
high-dose
chemotherapy
chemotherapy given in a higher dose than is used in standard
chemotherapy; used to kill most or all cancer cells before infusion of
stem cells
3
Understanding The Stem Cell Transplantation Process
human leukocyte
antigens (HLA)
proteins found on the surface of the blood cells that are used to match a
patient with a donor for a stem cell transplant
infertility the inability to have children
infusion the process of putting (transplanting) the stem cells into the patient’s
bloodstream
jaundice yellowing of the skin or eyes
neutropenia a condition marked by low levels of neutrophils (a type of white blood
cell) that puts an individual at increased risk of infection
peripheral blood
stem cells
hematopoietic stem cells that move out of the bone marrow and
circulate in the bloodstream
port or portacath a type of central venous access device that is implanted under the skin
in the chest; used to administer stem cells, medications, and blood
products and to withdraw blood samples
reduced-intensity
transplant (also
called non-
myeloablative or
mini-allogeneic
transplant)
a type of allogeneic transplant that uses lower doses of chemotherapy
before the transplant; sometimes used in older patients or those whose
bodies cannot tolerate high-dose chemotherapy
refractory lymphoma that does not respond to, or is resistant to, attempted forms
of treatment
relapse the return of cancerous lymphoma cells after a period of improvement
remission a condition in which the signs and symptoms of lymphoma decrease
(partial remission) or disappear (complete remission) after treatment
thrombocytopenia a condition marked by low levels of platelets (also called thrombocytes)
that makes it more difcult for blood to clot and puts an individual at
greater risk of bleeding
umbilical cord
blood (also called
cord blood)
blood that remains in the umbilical cord after a baby is born; contains
stem cells that can be used for some allogeneic transplants if an adult
donor cannot be found
4
Concepts and Considerations Before Stem Cell Transplant in Lymphoma
Part 1
Chapter 1: The Basics of Stem Cell Transplantation in
Lymphoma
What Are Stem Cells and What Do They Do?
Hematopoietic (blood-forming) stem cells are immature cells that live in the
bone marrow, a spongy tissue inside bones. They can either divide into more
blood-forming stem cells, or they can develop into mature blood cells and
move into the bloodstream. These stem cells can turn into different kinds of
blood cells, including white blood cells, which ght infection; red blood cells,
which transport oxygen; and platelets, which help with blood clotting. All of
these types of blood cells live for only a short time, so old and damaged cells
are constantly being replaced by newer cells. The body needs an adequate
supply of hematopoietic stem cells to create enough new red blood cells,
white blood cells, and platelets to stay healthy.
Why Are Stem Cell Transplants Used?
In patients with lymphoma, chemotherapy and radiation are often used to kill
the cancerous white blood cells in the body. Unfortunately, these treatments
also kill some of the hematopoietic stem cells that the body needs to replace
the cancerous cells with new, healthy cells. High-dose chemotherapy,
which uses stronger than usual doses of chemotherapy medications, often
kills most or all of a patient’s stem cells. Although high-dose chemotherapy
(with or without the addition of radiation therapy) can be very successful at
killing cancer cells, it is generally not safe to use as a stand-alone treatment,
because the body cannot survive without enough stem cells to make new
blood.
This is where stem cell transplantation comes in. A stem cell transplant adds
new stem cells back into the body after high-dose chemotherapy with or
without radiation, replacing the cells that were destroyed and restoring the
bone marrow’s ability to make new blood cells. The ability to transplant stem
cells allows doctors to use higher doses of chemotherapy than the body
would normally tolerate, increasing the probability of treatment success.
Part 1 — Concepts and Considerations Before
Stem Cell Transplant in Lymphoma
5
Understanding The Stem Cell Transplantation Process
Which Patients Can Benet From a Stem Cell Transplant?
Stem cell transplantation, in combination with high-dose chemotherapy with
or without radiation, is used in the treatment of several types of lymphoma.
It is used for treatment of both Hodgkin lymphoma and non-Hodgkin
lymphoma. High-dose chemotherapy followed by stem cell transplantation is
a treatment that can lead to a long-lasting response.
For some patients with lymphoma, a stem cell transplant may be
considered for:
lack of response to a previous treatment (refractory disease)
return of disease after an earlier treatment success (relapse)
achieving a prolonged remission (disappearance of signs and symptoms of
lymphoma) in patients at high risk of relapse
Stem cell transplantation is most commonly used for patients with relapsed,
aggressive (fast-growing) lymphoma that is still sensitive to the effects of
chemotherapy. Autologous stem cell transplantation (patient is his or her own
donor) is rarely used for patients with cancers that are not responding to
chemotherapy.
Because the combination of high-dose chemotherapy and stem cell
transplantation places great strain on a patient’s body, this approach may not
be an option for every patient. This treatment usually requires a lengthy
inpatient or intense outpatient stay and a long recovery process, and there
are a number of side effects. Most of these side effects are temporary, such
as low blood cell counts, infections, fatigue (tiredness), and hair loss, but a
few may be permanent, such as infertility (inability to have children). For
more information about side effects, see Chapters 4 and 5.
In deciding whether a patient is a candidate for a stem cell transplant, the
patient’s healthcare team considers a patient’s age, medical history, current
health status, type of lymphoma, and response to previous treatments. They
will compare the risks associated with the lymphoma itself versus the
potential risks of the transplant procedure, and they will outline these
expected risks and benets with the patient. They may also evaluate other
6
Concepts and Considerations Before Stem Cell Transplant in Lymphoma
Part 1
options such as standard chemotherapy, radiation, or clinical trials to treat
the lymphoma (see Chapter 7 for more information on clinical trials). It is
important for patients to discuss all potential therapeutic options and their
risks and side effects with their healthcare team to determine if a stem cell
transplant is the right option for them.
Transplant Centers
Stem cell transplantation is a complex procedure that involves specialized
care that is only offered at certain hospitals or specialized transplant centers.
If the hematologist–oncologist (doctor specializing in treating patients with
blood disorders/cancers such as lymphoma) thinks a patient is a good
candidate for a transplant, the patient will be referred to a transplant center.
The transplant center staff will conduct their own evaluations to conrm
whether the patient is eligible for stem cell transplantation. The transplant
centers’ medical assessment considers the patient’s type of lymphoma,
overall health, major organ function, and current disease state. This may
be followed by a psychosocial assessment to evaluate the patient’s support
system and other elements that may affect the procedure’s success. The
transplant team collectively reviews the results of the evaluation and shares
them with the patient, family, and referring physician.
Transplantation Stages
History and Physical Examination – assessment of the patient’s general
level of health to determine the eligibility for the transplant
Collection – the process of obtaining the stem cells to be used in the
transplant
Conditioning – treating the patient’s lymphoma with high-dose
chemotherapy with or without radiation
Infusion – preparation of the stem cells followed by administration
(transplant) into the patient
Recovery Period – monitoring the patient for any complications or side
effects while the stem cells grow and begin working
The Transplant Team and Considerations Before Transplantation
Transplant centers offer a comprehensive care approach to transplantation,
and their group of specialists is referred to as the transplant team. The
7
Understanding The Stem Cell Transplantation Process
team consists of doctors, social workers, dietitians, physical therapists,
and a transplant coordinator. The team may also include pharmacists,
respiratory therapists, dermatologists, gastroenterologists, pulmonologists,
nephrologists, intensive care physicians, psychologists, and other medical/
surgical subspecialists who will work together to provide the best outcome
for the patient.
The transplant coordinator, who is often a registered nurse, is a key member
of the transplant team. The transplant coordinator is in control of timing,
tests, stem cell collection, and treatments. The coordinator can help the
patient understand the required length of stay in the hospital, required items
and those not allowed for the hospital stay, and visitors’ regulations. The
potential short-term and long-term side effects and coping strategies will also
be reviewed with the patient. The transplant coordinator is also the person
who can help or nd the right transplant team member to answer a patient’s
questions, including nancial assistance and insurance concerns.
Initial discussions with the transplant team should include an overview of the
entire transplantation process, as well as the role of a stem cell transplant
within the larger plan of lymphoma treatment. For a typical overview of the
transplant journey, see pages 48–51. Sample treatment timelines for both
autologous and allogeneic transplants begin on page 21.
Patients should inform family and friends about the process and their
expectations of its impact on their lives. They should also anticipate and
make plans for social and nancial support. Finally, it is very important for the
patient to choose a caregiver who will help them through the entire process.
More information about caregivers can be found in Chapter 6.
For patients of reproductive age, one signicant long-term side effect to
address prior to treatment is the likelihood that high-dose chemotherapy may
cause infertility. The treatment can also bring on early menopause in women.
8
Concepts and Considerations Before Stem Cell Transplant in Lymphoma
Part 1
For younger patients who may wish to have children in the future, there are
options available to help preserve fertility, including possible protection of the
ovaries during treatment, freezing of sperm cells or egg cells before
treatment, or in vitro creation and freezing of fertilized embryos. Patients of
reproductive age who are concerned about maintaining the ability to have
children in the future should discuss their options with the transplant team
before beginning treatment. Unfortunately, some lymphomas progress
rapidly and any delay in treatment may be life-threatening, so fertility
preservation prior to stem cell transplant may not be an option in such cases.
This should be discussed with the healthcare team in detail prior to
transplantation.
See the Resources in Chapter 9 for information to order the Transplant
Journey Checklist, which provides an overview of steps to take to prepare for
a transplant or to order the Lymphoma Care Plan that patients and their
healthcare team can complete together to plan their care before, during, and
after a transplant.
9
Understanding The Stem Cell Transplantation Process
Chapter 2: Treatment Options in Stem Cell Transplantation
As discussed in Chapter 1, a stem cell transplant is used to replace stem
cells that have been destroyed by high-dose chemotherapy with or without
radiation. There are two main types of stem cell transplantation: autologous
(the patient is his or her own donor) and allogeneic (the donor is another
person who is genetically similar to the patient). Sources for stem cells
include bone marrow, peripheral blood, and umbilical cord blood.
Types of Stem Cell Transplants
Autologous Stem Cell Transplantation
In autologous stem cell transplantation, the patient is his or her own donor.
Stem cells are collected from the patient, processed to get them ready, and
then frozen. Several days, weeks, or even years later, the patient undergoes
conditioning, which is another term for the high-dose chemotherapy with or
without radiation used to treat the lymphoma. Conditioning may also be called
a preparatory regimen. After the conditioning treatment is given and most or
all of the cancer cells have been killed, the collected stem cells are infused
back into the patient to replace the normal stem cells that were destroyed by
the treatment. Because a patient is receiving his or her own stem cells, an
autologous stem cell transplant ensures a perfect match between the patient
and the transplanted cells, which reduces the risk of
complications.
Part 1 — Concepts and Considerations Before
Stem Cell Transplant in Lymphoma
Patient
1. Collection
Stem cells are
collected from the
patient’s bone
marrow or blood.
3. Reinfusion
Stem cells
are thawed and
reinfused
into the patient.
2. Conditioning
and Processing
While the patient
receives treatment
(conditioning), the
blood or bone marrow
may be processed
in the laboratory
to concentrate the
stem cells. Samples
are frozen until needed.
10
Concepts and Considerations Before Stem Cell Transplant in Lymphoma
Part 1
Allogeneic Stem Cell Transplantation
In allogeneic stem cell transplantation, the stem cell donor is another person
who has genetically similar blood cells to the patient. This person is often
a brother or sister. For patients who do not have a compatible sibling, the
donor can be a person unrelated to the patient who is identied through a
registry of possible donors. The donor’s stem cells are collected in the same
way as a patient’s cells are collected in an autologous transplant. Then, once
the patient has undergone conditioning, the donor’s stem cells are infused
into the patient.
One of the benets of allogeneic transplants is that after the donated cells
engraft (take hold) in the patient (typically a few months later), they begin to
function as part of the patient’s immune system and may attack any
remaining cancer cells. This benet is termed graft-versus-lymphoma (GVL)
effect, and it only occurs in allogeneic stem cell transplants.
One signicant risk of allogeneic transplants, however, is that in some cases,
the donor’s stem cells may start to attack the patient’s healthy cells. This is
called graft-versus-host disease (GVHD). The more closely matched the
donor’s cells are to the patient’s cells, the less likely this is to occur. See
Chapter 4 for more information about GVHD.
Reduced-intensity transplantation (also called non-myeloablative or mini-
allogeneic transplantation) is a type of allogeneic transplantation. Compared
3. Infusion
Stem cells
are infused
into the patient.
1. Collection
Stem cells are
collected from
the donor’s bone
marrow or blood.
Donor Patient
2. Conditioning
and Processing
While the patient
receives treatment
(conditioning), the
blood or bone marrow
may be processed
in the laboratory
to concentrate the
stem cells.
11
Understanding The Stem Cell Transplantation Process
with a standard allogeneic transplant, a reduced-intensity transplant uses
lower doses of chemotherapy with or without radiation to prepare the patient
for the transplant. These types of transplants can be used in patients at a
more advanced age or in those with other health conditions that may make it
unsafe to completely destroy their bone marrow using a high-dose
conditioning treatment.
After a reduced-intensity transplant, the stem cells from both the donor and
the patient exist together in the patient’s body for some time, but the donor’s
cells eventually take over the bone marrow and replace the patient’s own
bone marrow cells over the course of months. The new cells from the donor
can then develop an immune response to the cancer cells and exhibit a GVL
effect, helping to kill any remaining cancer cells.
The reduced-intensity treatment, however, may be less effective in killing the
cancer cells. The conditioning regimen kills as many cancer cells as possible
and suppresses the patient’s immune system just enough to allow the
donor’s stem cells to engraft in the bone marrow. The patient’s blood cell
counts may not fall as low as they would with high-dose chemotherapy, and
the reduced-intensity regimen puts less strain on the patient’s major organs,
making it a more tolerable treatment.
Choosing Which Type of Stem Cell Transplant to Use
The major difference between autologous and allogeneic transplantation
is that in autologous transplantation, the main benet is the high-dose
chemotherapy with or without radiation that occurs before the transplant. In
allogeneic transplantation, on the other hand, the GVL effect that happens
when the donor cells attack the patient’s remaining cancer cells may be just
as important as—or even more important than—the high-dose conditioning
treatment itself. The intensity of the GVL effect varies among patients.
In general, control of the lymphoma is better with allogeneic transplantation,
but the toxicity and risk of complications is also higher, because the donor
immune cells can sometimes attack the healthy cells of the patient and
cause GVHD. On the other hand, an allogeneic transplant is a cleaner stem
12
Concepts and Considerations Before Stem Cell Transplant in Lymphoma
Part 1
cell source, meaning that it avoids the potential contamination of cancer cells
that can occur with an autologous transplant.
The decision about which treatment to use is complex, and the factors that
have to be considered are different for each individual patient. Therefore, the
decision should involve a detailed discussion with the patient’s doctor and a
referral to a major transplant center.
Sources of Stem Cells for Transplantation
Identifying a Donor
In autologous transplants, there is no need to nd another person to donate
stem cells, as the patient will be donating to himself or herself. However, for
allogeneic transplantation, it is important to nd a donor whose blood cells
are as similar to the patient’s own cells as possible. If the stem cells are too
different, the new immune cells from the transplant are more likely to try to
destroy healthy cells in the patient’s body, leading to GVHD.
Before a transplant, human leukocyte antigen (HLA) typing (also called
tissue typing) is performed with blood tests or a swab of saliva to check the
surface of the blood cells for proteins called HLA markers. The proteins on
the outside of the patient’s cells are compared to those of a potential donor.
Well-matched HLA antigens between recipient and donor result in greater
transplant success.
Close family members, particularly siblings, are more likely to have very
similar patterns of proteins; however, only 25 to 35 percent of stem cell
transplant patients have an HLA-matched sibling. When a patient does not
have a matched sibling, the patient’s HLA markers can be compared to a
database of individuals who have volunteered to donate their stem cells. The
likelihood that an unrelated donor can be found who is HLA-matched to a
patient ranges from 65 to 99 percent. The best chance for HLA matching
occurs when the donor and recipient have the same ethnic background.
Although the number of people registered to be donors is increasing overall,
people from certain minority ethnic groups may have a lower chance of
nding a matching donor. Large volunteer donor registries make it more likely
13
Understanding The Stem Cell Transplantation Process
that an HLA-matched donor not related to the patient can be found. For
instance, Be The Match
®
(bethematch.org), operated by the National Marrow
Donor Program
®
(NMDP), manages the largest and most diverse marrow
registry in the world. Be The Match is working to increase the number of
available volunteers who have had their tissue typed and are registered to
donate, so that they can nd a match for all patients in need of a transplant.
Over the past few years, increasing numbers of U.S. transplant centers have
begun performing mismatched or haploidentical transplants from family
members who are not a perfect match. This strategy is most often used
when a child, parent, or sibling donates to a patient who is only half-matched.
In this case, half or more of the HLA factors will match, while up to half of
them don’t match. This procedure sometimes requires processing to remove
some of the non-matching white blood cells that can cause GVHD.
Researchers are also developing promising new techniques to prevent
GVHD by using high-dose chemotherapy to eliminate donor white blood
cells. This approach may make haploidentical transplants a viable donor
option for increasing numbers of patients. Haploidentical transplantation is
being used more and more commonly in specialized transplant centers in the
United States.
HLA matching does not have anything to do with blood type. For example, if
a patient’s blood type is A positive, the HLA-matched donor who is identied
to provide stem cells for that patient could have a blood type of O negative.
In autologous transplants, the patient’s blood type does not change after the
transplant, because the cells are from his or her own body. However, in
allogeneic transplants, the patient’s blood type will actually change to the
donor’s blood type once the stem cells have engrafted and begun making
new red blood cells, typically a few months after the transplant.
Whether stem cells for transplantation are collected from the patient or from
the donor, they can be obtained from one of three sources: bone marrow,
peripheral blood, or umbilical cord blood.
14
Concepts and Considerations Before Stem Cell Transplant in Lymphoma
Part 1
Bone Marrow
Bone marrow is a wet, spongy tissue inside bones where the blood cells
are generated. Bone in the pelvis, or hip bone, is a good source of stem
cells, and this bone is the most common source of cells for a bone marrow
transplant. Bone marrow stem cells can be used for allogeneic or, less
commonly, autologous stem cell transplantation. To remove the stem
cells, the patient or donor is given general anesthesia. In a process called
harvesting, a large needle is inserted into the back of the hip bone, and some
of the bone marrow is removed and frozen. To collect enough stem cells from
the bone marrow for a transplant, more than 100 insertions are made into the
bone, usually through a few holes in the skin. The marrow that is harvested
is passed through a series of lters to remove bone or tissue fragments and
to concentrate the cells. In an allogeneic transplant, if the donor’s cells are
harvested immediately before the transplant, then the cells are placed in a
plastic bag and infused directly into the recipient’s vein within a few hours.
If the donor is not located near the patient, or if the transplant is autologous
and the patient is donating for his or her own use, the marrow can be frozen
and stored for years. When it is time for the patient to receive the stem cells,
the marrow is administered directly into a vein, just like a blood transfusion.
A hospital stay of about six to 24 hours after the harvesting procedure is
needed for the donor to recover from the anesthesia and the pain at the
needle insertion sites. Lower back soreness may be experienced for a few
days following the procedure. The donor’s bone marrow regenerates soon
after the procedure. The loss of red blood cells may result in temporary
anemia, or low levels of iron in the blood, which can make donors feel tired
and short of breath, especially when it is severe. Anemia can often be
managed with iron supplements.
15
Understanding The Stem Cell Transplantation Process
Peripheral Blood
As discussed in Chapter 1, the stem cells that form blood cells normally live
in the bone marrow. However, a small number of these stem cells move into
the bloodstream and circulate freely in the blood; these are called peripheral
blood stem cells. In many cases, doctors can now use the process called
apheresis to lter these peripheral stem cells out of the blood, eliminating
the need for the surgical removal of bone marrow. In this procedure, blood is
removed from a vein, the stem cells are collected, and the rest of the blood is
returned to the patient or donor.
The only challenge with this approach is that normally there are very few
stem cells circulating in the blood. However, drugs called granulocyte
colony-stimulating factors (G-CSFs)—such as lgrastim, lenograstim, and
peglgrastim—can be administered a few days before the apheresis
procedure to stimulate more stem cells to move out of the bone marrow and
into the bloodstream. Using G-CSFs before the apheresis procedure greatly
increases the chances of collecting enough stem cells for the transplant.
Some transplant centers also use chemotherapy or other drugs before the
administration of G-CSFs to further help release stem cells from the bone
marrow. Even so, the apheresis procedure may need to be repeated several
times until enough stem cells are collected. The collected stem cells are
treated to remove contaminants and then frozen to keep them alive until the
patient is ready to receive them.
Collecting stem cells from the blood is easier on the patient or donor than
harvesting bone marrow from a bone, because the procedure involves less
pain, no anesthesia, and no hospital stay. The entire apheresis procedure
also takes just four to six hours, with no recovery time needed. Another
benet of using peripheral blood stem cells is that after they are transplanted,
they engraft and begin working more quickly than cells taken from bone
marrow.
16
Concepts and Considerations Before Stem Cell Transplant in Lymphoma
Part 1
However, one major disadvantage of using stem cells collected from the
blood is that, in allogeneic transplants, this approach is associated with a
greater risk of GVHD. Collecting peripheral stem cells from the blood is now
the most commonly used method of obtaining cells for autologous stem cell
transplants. But in certain situations, especially in allogeneic transplants,
stem cells harvested from the bone marrow may be preferred due to the
possible lower risk of GVHD.
Umbilical Cord Blood
After the birth of a newborn, some of the baby’s blood is left behind in the
placenta and umbilical cord; this is known as umbilical cord blood or just
cord blood. Cord blood contains many stem cells, so this blood can be
collected and frozen until needed for later use in a stem cell transplant.
Stem cell transplantations with cord blood are not as common as those from
other sources, for two reasons: 1) there are a smaller number of stem cells
present in cord blood, and 2) the cells can take longer to engraft and start
working than stem cells from bone marrow or peripheral blood. However,
one advantage of this source is that umbilical cord blood stem cells do not
need to match entirely with a patient to be acceptable for allogeneic stem cell
transplantation. For this reason, umbilical cord blood stem cell transplants
may be considered when a well-matched donor cannot be found among
family members or volunteers who have signed up to donate.
17
Understanding The Stem Cell Transplantation Process
P
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Questions to Ask Before Deciding to Undergo a
Stem Cell Transplant
What type of transplant is most appropriate for me (autologous or
allogeneic) and why?
If an allogeneic transplant is being considered, how will a donor be
found?
What are the risks associated with this procedure?
What are the benets associated with this procedure?
What complications may arise as a result of having a transplant?
What are the short-term and long-term side effects I might experience
after my transplant?
What can be done to lessen the side effects?
Will getting a transplant make me ineligible for other lymphoma
treatments?
How do I identify a hospital or transplant center for the transplant?
How long will I need to be in the hospital?
How long will I need someone to care for me after the transplant?
Will my insurance cover this procedure?
How sick will this treatment make me?
How will we know if the treatment is working?
How and for how long will the treatment affect my normal activities
(e.g., work, school, childcare, driving, sexual activity, and exercise)?
What is my chance of making a full recovery?
Is the transplant and related treatment part of a clinical trial? (see
Chapter 7 for additional details on clinical trials)
18
The Procedure of Stem Cell Transplantation
Part 2
Chapter 3: The Stem Cell Transplantation Process
Before Stem Cell Collection
Prior to collecting the stem cells for the transplant, tests will be administered
to either the patient (in autologous transplants) or the donor (in allogeneic
transplants) to evaluate their overall health. These may include a complete
blood count (CBC); liver and kidney function tests; tests for viral hepatitis
and human immunodeciency virus (HIV); a restaging test (bone marrow
biopsy, computed tomography [CT], or positron emission tomography [PET]/
CT scan) to measure the extent of the lymphoma and response to previous
therapy; a bone marrow biopsy (in autologous transplants); and lung, heart,
and kidney function tests. Stem cell collection usually occurs a few weeks
prior to high-dose chemotherapy with or without radiation.
The Transplantation Process
Once donor stem cells have been obtained, patients undergoing a stem cell
transplant will experience a similar procedure whether they are undergoing
an autologous transplant or an allogeneic transplant.
Conditioning
Stem cell transplants are preceded by a high-dose chemotherapy treatment
with or without radiation to kill the cancerous cells. The goal of the higher
dose of chemotherapy is to kill as many cancer cells as possible before the
transplant takes place. These chemotherapeutic treatments typically require
seven to 14 days. This process is called conditioning, or preparatory therapy.
The treatment destroys the patient’s stem cells along with the cancerous
cells. These conditioning treatments can be relatively toxic.
Most patients will receive high-dose chemotherapy without radiation for
conditioning, but the combination of total body radiation with chemotherapy
may be used. In certain circumstances, the radiation may be “fractionated,”
meaning that the radiation dose is given over several days to decrease the
toxicity. Monoclonal antibodies such as rituximab (Rituxan) may also be used.
Part 2 — The Procedure of Stem Cell
Transplantation
19
Understanding The Stem Cell Transplantation Process
Central Line or Port Placement
Prior to the transplant, a surgeon or a radiologist will implant some type of
central venous access device into the patient’s chest near the neck. The
device used may either be a long tube called a central venous catheter
(commonly known as a central line) or it may be a round device called a
port (sometimes called a portacath) that is implanted just beneath the skin.
The central line or port is inserted surgically after giving local anesthesia to
numb the insertion area, and it usually remains in place for the duration of
treatment and for several weeks or even months following the transplant.
On a central line, the tube coming out of the chest has several openings that
can be used to give or take uids into or out of the body. With a port, uids
can be exchanged by inserting a needle through the skin and into the center
of the port, called the septum. The central line or port will be used to infuse
the transplanted stem cells, as well as to administer other medications and
blood products into the body. It can also be used to draw blood samples for
laboratory tests. The gure below shows where the central line or port is
typically inserted.
20
The Procedure of Stem Cell Transplantation
Part 2
Stem Cell Infusion
Usually a day or two after conditioning treatment is nished, the patient
is given the stored stem cells. Donor stem cells are delivered through the
central line or port into the patient’s veins. Infusing the stem cells usually
takes between one and four hours and is typically not painful; however, some
patients have reported discomfort or pain, as each patient’s pain tolerance is
different. Patients are closely monitored throughout the infusion process, as
they may experience fever, chills, hives, shortness of breath, or a drop in blood
pressure during the procedure. To stimulate the growth of infection-ghting
white blood cells, granulocyte colony-stimulating factor (G-CSF) may also be
given at this time. Additionally, blood cell replacement, nutritional support, and
drugs to prevent graft-versus-host disease (GVHD) may be used.
Recovery
Following a stem cell transplant, inpatient or intense outpatient stays can
vary from 12 to 30 days, depending on how quickly the new stem cells
engraft, or move into the patient’s bone marrow and begin making new blood
cells. During this engraftment period, the patient’s white blood cell levels are
very low, making the risk of infection high. These infections can be severe
and even life-threatening. To prevent this, the patient receives prophylactic
antimicrobials (drugs that prevent infections). Infection risk remains high until
the stem cells have been able to regenerate the white blood cells, usually
in about two to four weeks. Engraftment is faster after transplantation of
peripheral blood stem cells than after a bone marrow stem cell transplant.
While each patient’s transplant is different, the two tables on the following
pages show a sample timeline for someone having an autologous stem cell
transplant or an allogeneic stem cell transplant. The days leading up to the
transplant are given minus numbers, such as Day −3 or Day −2. The day of
the transplant is Day 0, and the days that follow are Day +1, Day +2, etc.
21
Understanding The Stem Cell Transplantation Process
Sample Timeline of an Autologous Transplant
Description Approximate Time Period
Stem Cell
Mobilization
If peripheral blood stem cells will
be used, the patient receives
daily injections of a G-CSF for
ve days prior to collection to
stimulate the stem cells to move
into the bloodstream.
5 Days Prior to Collection
Stem Cell
Collection
Stem cell
apheresis or
bone marrow
harvesting
For peripheral cell donations,
blood is removed from the
patient’s arm, passed through
a machine to collect the stem
cells, and then returned into
the patient’s other arm. This
apheresis procedure may need
to be repeated one or more times
on subsequent days if not enough
cells are collected the rst time.
For bone marrow donations,
anesthesia is given, and then
needles are inserted into the
patient’s hip bone to withdraw
liquid bone marrow. All necessary
bone marrow is collected in a
single procedure.
Collected cells are frozen until
infusion.
Day −21 to Day −14
A few weeks before
high-dose chemotherapy
Conditioning
High-dose
chemotherapy
with or without
radiation
High-dose chemotherapy and
possibly radiation are given to
kill most or all of the remaining
cancer cells in the blood.
Day −10 to Day 0
Start date varies depending on
particular conditioning treatment
Transplant
Infusion of
stem cells
Frozen stem cells are thawed
prior to transplant.
Infusion through the central line
or port usually takes one to four
hours.
Day 0
22
The Procedure of Stem Cell Transplantation
Part 2
Sample Timeline of an Autologous Transplant (continued)
Description Approximate Time Period
Early
Recovery
Feeling the
effects of the
chemotherapy
White blood cell, red blood cell,
and platelet counts are low.
Patient may experience diarrhea
and/or mouth sores.
The risk of developing an
infection is high.
Day 0 to +7
Pre-
Engraftment
The turning
point
These days may be the most
difcult, as blood counts are still
low and the stem cells have not
taken hold yet.
Rarely, patients develop a
fever, rash, and uid in the
lungs, known as “engraftment
syndrome.”
Day +7 to Day +10
Engraftment
Blood counts
return to
normal
The patient starts feeling
better, and the risk of infection
decreases.
Day +12 to +30
Recovery
Immune
system is still
not working
properly
The patient is sent home to
recover with a caregiver.
The patient may remain
on medications to prevent
infections.
Day +30 to 6 months
Continued monitoring by transplant
team
Late
Recovery
Patient returns
to normal
activities
The patient’s immune system is
almost fully recovered.
There is still a risk of late
complications, such as organ
dysfunction or recurrence of the
original disease.
Patient receives vaccinations
they had during childhood.
6 months and onward
23
Understanding The Stem Cell Transplantation Process
Sample Timeline of an Allogeneic Transplant
Description Approximate Time Period
Donor
Identication
A potential donor who is
HLA-matched to the patient
is identied either from within
the patient’s family or from a
database of individuals registered
to donate stem cells. Cord blood
stem cells may also be used.
Varies
Donor
Screening
The potential donor undergoes a
physical exam and blood tests to
conrm that donation will be safe
and effective for both patient and
donor.
Varies
Donor
Stem Cell
Mobilization
If donating peripheral blood
stem cells, the donor receives
ve days of daily injections of a
G-CSF to stimulate stem cells to
move into the bloodstream.
5 Days Prior to Collection
Donor
Collection
Stem cell
apheresis or
bone marrow
harvesting
For peripheral cell donations,
blood is removed from the
donor’s arm, passed through
a machine to collect the stem
cells, and then returned into the
donor’s other arm. This apheresis
procedure may need to be
repeated one or more times on
subsequent days if not enough
cells are collected the rst time.
For bone marrow donations,
anesthesia is given, and then
needles are inserted into the
donor’s hip bone to withdraw
liquid bone marrow. All necessary
bone marrow is collected in a
single procedure.
Collected cells are frozen until
infusion.
Varies
Can occur while patient is receiving
high-dose chemotherapy, but is
usually done days, weeks, or months
beforehand
Donor
Recovery
Most donors are able to return to
work, school, or other activities
within a week of donation.
1 to 7 Days after Donation
24
The Procedure of Stem Cell Transplantation
Part 2
Sample Timeline of an Allogeneic Transplant (continued)
Description Approximate Time Period
Patient
Conditioning
High-dose
chemotherapy
with or without
radiation
Patient receives high-dose
chemotherapy and possibly
radiation to kill most or all of the
remaining cancer cells in the
blood.
Day −10 to Day 0
Start date varies depending on
particular conditioning treatment
Patient
Transplant
Infusion of
stem cells
Frozen stem cells are thawed
prior to transplant.
Infusion of stem cells through
the patient’s central line or port
usually takes one to four hours.
Day 0
Early
Recovery
Feeling the
effects of the
chemotherapy
White blood cell, red blood cell,
and platelet counts are low.
Patient may experience diarrhea
and/or mouth sores.
The risk of developing an
infection is high.
Day 0 to +7
Pre-
Engraftment
The turning
point
These days may be the most
difcult, as blood counts are still
low and the stem cells have not
taken hold yet.
Day +7 to Day +10
Engraftment
Blood counts
return to
normal
The patient starts feeling
better, and the risk of infection
decreases.
Acute GVHD may develop at this
point. Typical symptoms are skin
rash, diarrhea, and worsening of
liver function.
Around Day 30, a chimerism
study may be performed to make
sure that the remaining bone
marrow is all from the donor and
to further conrm engraftment.
Day +12 to +30
Recovery
Immune
system is still
not working
properly
The patient is usually sent home
to recover with a caregiver
around Day 90.
The patient may remain on
medications to prevent infections
after going home.
Day +30 to 6 months
Continued monitoring by transplant
team
25
Understanding The Stem Cell Transplantation Process
Sample Timeline of an Allogeneic Transplant (continued)
Sharing Knowledge and Experience
Though this process may be new for you, several transplant survivors from
the Lymphoma Patient, Caregiver, and Advocacy Advisors have shared the
following tips and questions that they thought were helpful to know when
going through the transplantation process.
Description Approximate Time Period
Late
Recovery
Patient returns
to normal
activities
The patient’s immune system is
almost fully recovered.
There is still a risk of late
complications, such as organ
dysfunction, recurrence of the
original disease, and chronic
GVHD.
6 months and onward
Patient may receive vaccinations
they had during childhood
P
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You may want to ask for a second opinion.
Several weeks prior to the transplant, you should start completing
paperwork such as Family and Medical Leave Act (FMLA) forms,
a legal Will, a Living Will, Advanced Directive, Durable Power of
Attorney, and a Healthcare Power of Attorney.
Upon deciding to have the transplant, it is important to get the
paperwork started and set up a payment plan or make other nancial
arrangements with the hospital.
Find out which member of your transplant team to talk to about
working with your insurance company to get coverage for the
transplant. In addition, if you will be an outpatient, ask who can help
you with lodging arrangements.
Ask for further explanation from your doctor or healthcare team if you
don’t understand something.
Have someone accompany you to all appointments to take notes and
to be a second set of ears to help you remember things.
Assign someone the responsibility of reviewing and paying your bills
while you are recovering, and provide them with your accounts, user
names, and passwords.
26
The Procedure of Stem Cell Transplantation
Part 2
When preparing for the stem cell transplant, if permitted, consider
bringing the following items to the hospital or transplant center:
– Things to occupy your time during your stay such as books,
magazines, music, electronic devices, or knitting. You may nd it
difcult to concentrate at some times during your stay, so lighter
entertainment and reading material may be a good choice.
– Multiple outts to wear and socks or slippers.
– Button-down or V-neck shirts to allow easy access to the central line
or port.
– Your own bedding and towels.
– Your own toilet paper (it may be comforting to have your favorite
brand with you in case you experience diarrhea as a result of the
high-dose chemotherapy).
– Travel-sized toiletries like shampoo, soap, and razors, if the hospital
or transplant center does not provide such items.
The process of receiving the stem cells typically does not hurt,
although each person’s experience will be different.
Caregivers should know that their presence in your hospital room
after transplantation is important. They don’t have to say anything,
but just being there is helpful, as you will be going through a lot that is
“unexplainable” (see Chapter 6 for more about the caregiver’s role).
Be sure you completely understand and faithfully follow the discharge
instructions provided by the hospital/transplant center when you are
sent home.
During the rst weeks or months back home, have someone available
to clean your house, go to the store for you, and prepare your meals.
Not only will you probably be too weak to do these things for yourself,
but you also don’t want to risk infection by going out in crowded
places, handling raw foods, or cleaning contaminated surfaces.
Try to eat healthy and nutritious foods to help your strength recover.
27
Understanding The Stem Cell Transplantation Process
Questions to Ask Your Medical Team About the Stem
Cell Transplantation Process
For autologous transplants:
– How will you manage any pain I experience when my stem cells are
collected?
– How will you manage any pain I experience when the stem cells are
reinfused into my body?
For allogeneic transplants:
– Can donors have their cells collected at a facility near their homes,
or do they need to come to my facility for collection?
– Is it painful for donors to have their cells collected?
– How long should the donor plan to be away from home/work for the
cell collection process?
Is having the central line or port inserted painful, and will it be
uncomfortable once it’s in?
How long will the central line or port remain in my chest?
What will my insurance cover, and what will I be responsible for
paying?
If there are costs that I need to pay, can I set up a payment plan with
the hospital/transplant center?
Will the FMLA cover the time I will be in the hospital for my transplant
in addition to my recovery time?
28
The Procedure of Stem Cell Transplantation
Part 2
Questions to Ask Your Medical Team About the Stem
Cell Transplantation Process (continued)
What is needed to apply for short-term disability through my
employer?
Once I come home from the hospital after my transplant, what will I
require assistance with, and what can I do for myself?
What types of tests and follow-up care will I need to have after my
stem cell transplant?
How long will it be until I can be near my pet(s) and other people
again?
Will I need to wear a mask when I go out in public or to my doctor’s
ofce?
When will I be able to do my normal activities and go about my normal
routine? When will I start to feel like my old self again?
29
Understanding The Stem Cell Transplantation Process
Chapter 4: Engraftment and Post-Engraftment Periods
During the rst month after the transplant, the transplanted cells will start to
move into the bone marrow, grow and multiply, and produce healthy blood
cells that appear in the blood. This process is referred to as engraftment.
Frequent blood tests may be done to monitor this process. Complete
recovery of immune function may take up to several months for autologous
transplant recipients (a patient is his or her own donor) and one to two years
for patients receiving allogeneic transplants (the stem cell donor is another
person who is genetically similar to the patient). The rst sign of recovery is
typically a large increase in the white blood cell count. Blood and platelet
transfusions are continued as needed. During this period of engraftment,
antimicrobials (antibiotics and other drugs that kill microorganisms) are
continued as needed to prevent infection.
It is strongly suggested that patients discuss all of the potential complications
and short-term and long-term side effects of stem cell transplantation with
their doctor and healthcare team thoroughly and in detail, so that the patient
is informed in their decision making.
Short-Term Side Effects
Because the chemotherapy doses used before a stem cell transplant are
usually higher than standard chemotherapy doses, the typical side effects
from the chemotherapy—such as nausea, vomiting, fatigue (being tired),
mouth sores, and loss of appetite—may also be more intense, especially
right after transplantation and for a few weeks thereafter. The key to the
management of the potential side effects is prevention and early treatment.
Mild kidney issues are common after transplants and will be monitored
closely and treated aggressively. To manage fatigue, patients will need to
use strategies to minimize their exertion and optimize rest. Issues can also
arise related to a patient’s limited mobility, such as diminished muscle
strength, muscle loss, loss of balance and coordination, a diminished sense
of well-being, and risk of chest infections.
Part 3 — After The Transplant
30
After The Transplant
Part 3
It is important to remember that not all patients experience the same side
effects or intensity of side effects. Patients and their caregivers should keep
a journal of their side effects and discuss them with their healthcare team.
Complications
After treatment with high-dose chemotherapy with or without radiation, all
three types of blood counts become very low, which affects the body in
several ways.
A low white blood cell count (neutropenia) increases a patient’s risk of
infection.
A low red blood cell count (anemia) can make a patient feel tired and have
low energy.
A low platelet count (thrombocytopenia) reduces the ability of the blood to
clot, potentially increasing the risk of bleeding.
All of these are common complications after a stem cell transplant. While
waiting for the patient’s body to begin making new blood cells, these
complications are managed with red blood cell and platelet transfusions and
antimicrobials to prevent or treat infections.
Veno-Occlusive Disease (VOD)
High-dose chemotherapy also brings the risk of veno-occlusive disease,
a complication causing blood vessels that carry blood through the liver
to become blocked. Symptoms of VOD include jaundice (yellowing of the
skin and eyes), uid retention, and a painfully enlarged liver. While this
complication occurs in fewer than two percent of transplant recipients, severe
cases can be life-threatening. Because traditional anticlotting medications
can cause severe bleeding, doctors had few options for treating VOD
until 2016, when the U.S. Food and Drug Administration (FDA) approved
debrotide sodium (Detelio) for treating conrmed cases of VOD. Ongoing
research is now exploring the preventive use of debrotide to reduce the
chances that stem cell transplant recipients will develop VOD.
31
Understanding The Stem Cell Transplantation Process
Graft-Versus-Host Disease (GVHD)
For patients who undergo allogeneic stem cell transplantation, one of the
most signicant risks is a complication known as graft-versus-host disease.
This is a common condition that occurs when the donor’s stem cells attack
the patient’s healthy cells, and it can range from a minor problem to a very
serious one. When it develops shortly after engraftment of the donated
cells, this complication is known as acute GVHD (aGVHD), whereas when
it develops or continues months or years after the transplant, it is called
chronic GVHD (cGVHD). The two forms were once considered the same
disease process occurring at different times, but now some doctors think of
cGVHD as a condition more like an autoimmune disease such as lupus or
rheumatoid arthritis.
To prevent GVHD, patients undergoing allogeneic stem cell transplantation
are given corticosteroids such as prednisone to suppress the immune cells
and keep them from attacking the patient’s healthy cells. Nevertheless, as
many as 30 to 70 percent of patients receiving an allogeneic transplant may
develop aGVHD, and 20 to 50 percent may experience cGVHD. An individual
patient may experience either, both, or neither forms of this condition, but
those who develop aGVHD are more likely to subsequently have cGVHD.
Both forms can affect many different areas of the body, including the skin,
liver, eyes, mouth, and digestive tract.
Treatment with traditional anticlotting medications is not a good option
because those drugs can cause severe bleeding. Historically, high doses of
corticosteroids and other immunosuppressants have been the primary
approach for treating GVHD as well as preventing it. However, long-term
immunosuppressant use has many serious potential side effects and risks,
including making the body very susceptible to life-threatening infections. In
addition, as many as 50 percent of cases of cGVHD do not resolve with
corticosteroids alone. For these patients, the only FDA-approved medication
for use as a secondline treatment for cGVHD is ibrutinib (Imbruvica), a
kinase inhibitor originally approved as a lymphoma treatment. Researchers
are now trying to determine whether combining ibrutinib with corticosteroids
for frontline treatment of cGVHD is more effective than corticosteroids alone.
32
After The Transplant
Part 3
As stem cell transplantation has become increasingly common, there has
been a tremendous surge in research into new treatments for GVHD.
Dozens of clinical trials are currently underway testing numerous promising
medications to prevent or treat aGVHD and cGVHD. Like ibrutinib, many of
the drugs being studied are targeted therapies already used in the treatment
of lymphoma and other blood cancers. For example, the monoclonal
antibodies rituximab (Rituxan), ofatumumab (Arzerra), and obinutuzumab
(Gazyva)—which are presently approved for the treatment of certain
subtypes of B-cell non-Hodgkin lymphoma (NHL)—are now also being
studied for preventing and treating GVHD. Other drugs being researched for
this purpose include kinase inhibitors such as ruxolitinib (Jaka), baricitinib
(Olumiant), and fostamatinib (Tavalisse), and proteasome inhibitors such as
bortezomib (Velcade), carlzomib (Kyprolis), and ixazomib (Ninlaro).
The Recovery Process
The recovery time needed before returning to work or school is different for
each person, but patients receiving an autologous transplant may recover
sooner than those who undergo an allogeneic transplant.
Hair loss is a result of the high-dose chemotherapy. As the hair begins to
grow back during the recovery period, it is important to keep the scalp
protected from sun, heat, and cold. Patients should be aware that when their
hair starts to grow again, it may be a different texture and slightly different in
color than it was before the transplant. Often these differences go away in
time and hair returns to normal.
Many patients experience a loss of appetite and taste. As a patient’s appetite
returns, it is better to eat smaller meals more often at rst. It is recommended
to continue good oral hygiene, but to reduce infection risk, patients should
not go to a dentist without permission from the doctor. Patients should alert
the doctor in the event of bleeding, ulcers, or cold sores in the mouth.
Increased water intake can combat dry mouth.
33
Understanding The Stem Cell Transplantation Process
Some patients may notice that they bruise more easily during this period,
and shedding skin is also common. For skin care, baby oil or another
non-irritating oil for dry skin is recommended, as is avoiding strong sunlight
for approximately six months, then using sunscreen.
Fatigue is common, but it will eventually pass for the majority of people. It is
recommended to exercise gently, rest often, and keep a diary to help
measure progress. Fatigue may decrease sexual activity and desire at rst,
but this will likely return to normal over time.
Feeling depressed is also common during this time. Patients should realize
that the feeling of depression is normal and many transplant patients
experience this. Patients naturally face changes and a certain loss of control
after a stem cell transplant. If patients feel that the challenges are too big to
conquer, they might feel helpless or hopeless. Some helpful strategies to
cope with these struggles are obtaining more information, asking about how
other people have coped, and turning to others for support. If these feelings
continue, however, the patient should seek help from a counselor or
therapist. It is important for the caregiver to take notice if depression lasts for
an extended period of time and to mention this to the healthcare team.
Follow-up
Most patients will require a period of three months to one year after
transplant to recover. After returning home post-engraftment, patients can
do things to continue to prevent infections, such as taking regular showers,
washing hands often, keeping their teeth and gums clean, and avoiding
contact with sick people. If antibiotics have been prescribed, they should be
taken as directed. It will be helpful for patients to take their temperature when
feeling hot, chilled or unwell, monitor for blood in urine or stool, and look out
for new bruising or persistent nosebleeds. If the central line is still in place,
it must be regularly ushed with saline, and the insertion site needs to be
cleaned and redressed often. The line will be removed when it is no longer
needed. Ports do not require any maintenance care.
34
After The Transplant
Part 3
Patients with lymphoma should have regular visits with a doctor who is
familiar with their medical history and the treatments they have received.
Medical tests (such as blood tests, positron emission tomography [PET]
scans, and computed tomography [CT] scans) may be required at various
times during remission (signs of the disease disappear after treatment) to
see if the patient needs additional treatment. Some treatments can cause
long-term side effects or late side effects. These side effects may depend
on the patient’s age, gender, and overall health at the time of treatment, as
well as on the treatment type, duration, and frequency. A doctor will check
for these side effects during follow-up care. Patients and their caregivers
are strongly encouraged to keep copies of all medical records and test
results as well as information on the types, amounts, and duration of all
treatments received using a Lymphoma Care Plan document (shown in
Chapter 9) or accessing a mobile application such as the Lymphoma
Research Foundation’s (LRF’s) Mobile App (lymphoma.org/mobileapp).
These documents will be important for keeping track of the effects of
treatment, potential disease relapse (disease returns after treatment), or
disease that is refractory (disease does not respond to treatment).
To learn more about any of these resources, visit LRF’s website at
lymphoma.org/publication, or contact the LRF Helpline at (800) 500-9976 or
Post-Transplant Revaccinations
Antibodies to vaccine-preventable diseases decline one to four years
after allogeneic or autologous stem cell transplantation, putting transplant
recipients at risk of acquiring these infections. Therefore, beginning at six to
12 months after transplant (or as directed by the healthcare team), patients
who received an autologous transplant should start to be revaccinated
for the common childhood preventable infectious diseases. Patients who
received an allogeneic transplant should wait until their immunosuppressive
medications have been discontinued before beginning the revaccination
process. After that, they should follow their transplant physician’s
recommended schedule.
35
Understanding The Stem Cell Transplantation Process
Because every patient is different, physicians will provide guidance on
exactly which vaccines a patient should receive and the optimal time to
receive them. Vaccines that may be recommended include diphtheria,
tetanus, and pertussis (DTaP); measles, mumps, and rubella (MMR); polio;
and hepatitis B. Vaccinations against pneumococcus, meningococcus, and
Haemophilus inuenzae type b (Hib) may also be indicated, and most
patients will be advised to begin receiving the yearly inuenza (u) vaccine
as well. Physicians will provide guidance on a case-by-case basis about
whether an individual patient is healthy enough to receive the varicella
vaccine against chickenpox.
Patients can use the Lymphoma Care Plan (ordering instructions in Chapter
9) to discuss their physician’s suggestions for recommended vaccines and
the timing of those vaccinations after transplantation.
36
After The Transplant
Part 3
Chapter 5: Transplant Survivorship
Many transplant recipients experience ongoing medical symptoms, even two
years after transplant. However, at 10 years post-transplant, survivors are
nearly as healthy as adults who have never had a transplant.
Long-Term Side Effects
Patients receiving a stem cell transplant may experience signicant long-
term side effects, including:
cataracts (clouding of the lens of the eye, which causes vision loss)
early menopause
organ damage to the liver, kidneys, lungs, heart, and/or bones and joints
relapse (the disease returns)
secondary or new cancers
infertility (the inability to have children; for information about ways
to preserve fertility, see Chapter 1 or refer to the Lymphoma Research
Foundation’s (LRF’s) web page on “Fertility” available at
lymphoma.org/fertility)
Survivors are also more likely to experience musculoskeletal complaints
(stiffness and cramping), sexual problems, and a higher use of
antidepressants and anti-anxiety medications.
While some survivors view their health as worse than an average person
their age, many also report positive changes. These can include greater
personal growth, an enhanced appreciation for life, greater appreciation of
friends and family, different priorities, and a shift in life expectations.
Other issues impacting survivors can include pain management, quality of
life, and caregiver burnout. It is important for patients to discuss any problem
they experience with their healthcare team, as these issues are very
common. Additional resources on these topics are available by visiting LRF’s
Part 3 — After The Transplant
37
Understanding The Stem Cell Transplantation Process
website at lymphoma.org, or contacting the LRF Helpline at (800) 500-9976.
Relapsed/Refractory Disease
For some transplant recipients, the lymphoma relapses or becomes refractory
(does not respond to treatment). In this case, other treatment options may
be available. In some cases, a second autologous or allogeneic stem cell
transplant may be an option. Medications may also be used in this situation.
Brentuximab vedotin (Adcetris) is approved by the U.S. Food and Drug
Administration (FDA) for the treatment of classical Hodgkin lymphoma (cHL)
after failure of autologous stem cell transplantation. In addition, it can be used
as consolidation or maintenance therapy in patients with cHL who are at high
risk of relapse or progression after a stem cell transplant. Another medication
called nivolumab (Opdivo) was approved in 2016 for the treatment of
patients with cHL that has relapsed or progressed after autologous stem cell
transplantation and post-transplantation brentuximab vedotin.
It is critical to remember that today’s scientic research is continuously
evolving. Treatment options may change as new treatments are discovered
and current treatments are improved. Therefore, it is important that patients
check with their physician or with the Lymphoma Research Foundation (LRF)
for any treatment updates that may have recently emerged.
Support
A lymphoma diagnosis and undergoing transplantation often trigger a range
of feelings and concerns. In addition, cancer treatment can cause physical
discomfort. One-to-one peer support programs, such as LRF’s Lymphoma
Support Network, connect patients and caregivers with volunteers who have
experience with lymphoma or chronic lymphocytic leukemia, similar
treatments, or challenges, for mutual emotional support and encouragement.
Patients and loved ones may nd this useful whether the patient is newly
diagnosed, in treatment, or in remission. Contact LRF’s Helpline by calling
(800) 500-9976 or emailing [email protected], for more information.
38
After The Transplant
Part 3
Sharing Knowledge
Below are a few tips about the recovery process shared by other transplant
survivors.
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Once the transplant takes place, you should limit visitors other than
your caregiver to your hospital room or home to reduce infection risk.
After discharge from the hospital, you may need to wear a mask when
going out in public, including going to doctors’ appointments, to reduce
infection risk.
Do not be afraid to ask for help.
Listen to your body. If you need to rest, you should; if you feel you can
move around and walk, you should.
You will continue to have many follow-up blood tests after returning
home from having the transplant. This is one reason why your doctors
may decide to leave the central line or port in place after hospital
discharge.
Consider having an oncology massage once you are cleared by your
healthcare team to receive one. This is a special type of massage that
uses modied massage techniques designed to be safe for patients
at any stage of cancer treatment. Be sure the massage therapist you
choose is well-trained in oncology massage and designated as a
preferred practitioner by the Society for Oncology Massage
(s4om.org). An oncology massage can help you relax
and sometimes helps to manage any pain you may experience.
39
Understanding The Stem Cell Transplantation Process
Chapter 6: The Caregiver’s Role
Patients who undergo a stem cell transplant will need to select one or more
primary caregivers to help them through the entire transplant process, as the
process can be extremely challenging without the support of others. The
caregiver role is an active one and includes many important aspects of
recovery and care. Three important areas of support and advocacy
undertaken by the caregiver are:
medical – gathering information as an active part of the healthcare team,
talking to doctors, and helping care for the patient
nancial – talking to the insurance company and managing transplant
costs and daily household nances
emotional and social – being there to listen to and support the patient,
and keeping other family and friends informed and involved
Most transplant centers require a caregiver to be identied, and many
transplant centers offer classes to teach caregivers about their important role
in assisting the patient. Sometimes a caregiver is one person, but often
several people share the responsibilities.
Before the transplant, the caregiver will be a partner with the healthcare
team, helping the patient follow the treatment plan and make informed medical
decisions. It may be useful for the caregiver to:
request information and resources from the patient’s doctors about stem
cell transplantation and other treatment options
ask the healthcare team to explain what test results mean and how
medicines and other treatments will help
organize information about the patient’s treatment in a notebook to help
remember the details
be present when the doctors make their daily rounds to ask questions and
hear about any changes to the patient’s care during the hospital stay
Part 4 — Other Considerations and Resources
40
Other Considerations and Resources
Part 4
The caregiver can also help the patient with nancial concerns. The rst
project is planning how to cover the costs of transplant, such as determining
what costs will be covered by insurance and what costs will need to be
covered by the patient. If major costs will not be paid by the patient’s
insurance company, the caregiver can help with nding sources of nancial
assistance and possibly with fundraising. Staff members at the transplant
center can assist the patient and caregiver with these tasks. The caregiver
and the patient both may need to make plans for taking time away from work,
so they may want to look into taking an extended leave under the Family and
Medical Leave Act (FMLA) that allows them to keep their health insurance
and other benets. Finally, during the transplant and in the rst months of the
recovery process, caregivers need to make sure all household bills are paid
on time.
Before the transplant, the patient may experience many emotions, including
hope, fear, excitement, and anxiety. The caregiver can be present to listen, to
talk, or simply to be by the patient’s side. If patients feel well enough in the
days or weeks before the transplant, it is important for them to spend time
doing things they like to do and having fun with friends and family.
After the transplant, the caregiver’s role will change. In the transplant
center, nurses may have provided the majority of care for the patient, but
once the patient returns home, much of that care will transition to the
caregiver. The patient’s healthcare team will teach the caregiver the
necessary skills to care for the patient, and the caregiver should ask for
instructions on what to do in case of emergencies or whom to contact with
specic questions.
The patient may need to make several clinic visits during the rst month at
home. Caregivers will need to provide or arrange transportation, accompany
the patient to these visits, and discuss with the healthcare team how the
patient is doing.
The caregiver’s responsibilities at this point include:
being with the patient all the time, in case a sudden complication develops
and help is needed
41
Understanding The Stem Cell Transplantation Process
watching the patient for new symptoms or problems and reporting them to
the doctor or healthcare team right away
making sure the patient takes the right medications and dosages at the
right times
cleaning and changing dressings on the patient’s central line, if applicable
preparing meals and encouraging the patient to eat
taking the patient to appointments at the transplant center or clinic,
sometimes on short notice
helping to protect the patient from infections by preparing the home for
recovery, making healthy choices, and minimizing visitors
taking charge of household cleaning
taking care of pets
For some complications, such as an infection or graft-versus-host disease
(GVHD), the patient needs to be treated quickly. The caregiver should know
what symptoms to look for and have a list of phone numbers to call during
ofce hours, at night, and on the weekends.
The patient and caregiver may need to plan for returning to work and
managing ongoing medical bills. Family members, friends, or volunteers may
be able to take over at some point so the caregiver can return to work if
necessary. During the patient’s recovery, there will also be additional costs
and ongoing medical bills. The patient’s health insurance coverage should
remain active during this time.
The patient’s return home can involve many emotions, particularly when the
patient doesn’t feel better as quickly as he or she had hoped or expected.
Both the caregiver and patient may feel frustrated if the patient is not able to
do activities, help with household tasks, or be as active as he or she was
before the illness. It is important to remember that adjustment takes time.
Turning to a support group or talking to a professional counselor can help, as
well as reaching out to family and friends.
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Other Considerations and Resources
Part 4
The Caregiver Tips listed below were compiled from caregivers who have
helped their loved ones through the transplantation process.
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When speaking with the physician or healthcare team, be aware of
who is in the room (this may not be a place for children).
Be mindful that after the transplant, even if everything seems ne,
your loved one can still get sick very easily due to their compromised
immune system.
It’s okay to ask the patient questions that include:
– Do you want to see visitors, or do you prefer some time alone?
– Do you want to talk about what you have been through or do you
prefer to talk about other things?
– Do you want to rest, or can I bring you something to read, watch, or
listen to?
Depression is common for both the patient and you to experience.
You should also have a person to provide support. You need to remain
strong for the patient, but you will still need someone to lean on and
talk to. Remember to take care of yourself.
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Understanding The Stem Cell Transplantation Process
Chapter 7: Enrolling in a Clinical Trial
Patients who are planning to undergo stem cell transplantation may want to
consider enrolling in a clinical trial. A clinical trial is a carefully designed
research study that involves people who volunteer to participate. The
purpose of a clinical trial is to safely monitor the effects of a new drug, a new
combination of drugs, or another type of treatment on patients over time and
to identify more effective therapies for specic diseases. By participating in a
randomized clinical trial, patients may or may not get access to the newest
therapies, but at a minimum they will receive quality care and the standard
treatment in a carefully controlled and supportive environment.
Patients who are planning to undergo stem cell transplantation could be
eligible for several different types of clinical trials. These trials could include
studies comparing different components of the process, such as:
the high-dose chemotherapy, radiation, and other conditioning regimens
given prior to transplantation
the source of the stem cells (bone marrow, peripheral blood, or umbilical
cord blood)
medications and strategies used to manage side effects or prevent
infection after transplantation
medications to prevent or treat graft-versus-host disease (GVHD)
Clinical trials are described by phase, with each phase designed to nd out
specic information.
Phase I Clinical Trials – A new research treatment is given to a small
number of participants to determine a safe dose and schedule, and to nd
out what side effects it may cause.
Phase II Clinical Trials – The treatment is given to participants who all
have a particular type of lymphoma to learn whether the new treatment
has an anticancer effect on that specic type of lymphoma.
Part 4 — Other Considerations and Resources
44
Other Considerations and Resources
Part 4
Phase III Clinical Trials – Either the new treatment or the standard
treatment is given to two larger groups of participants to compare the
effectiveness and safety of the two treatments.
Phase IV Clinical Trials – Also called post-marketing studies, the
treatment continues to be studied after it has been approved to learn more
about the long-term safety and effectiveness.
Clinical trials may offer many benets and risks. Patients in clinical trials may
be able to try new treatments that are not otherwise available to all patients.
However, in some trials, patients do not get to choose which treatment they
receive, so being part of the trial means that the patient could receive the
therapy that turns out to be the less effective of the two treatments being
compared. No matter which therapy is received, however, one advantage of
all clinical trials is that the health of enrolled patients is monitored very
closely. The healthcare team studying the new treatment will explain all of
the possible benets and risks of a specic clinical trial.
Patients interested in learning more about clinical trials should discuss this
option with their healthcare teams. Patients interested in participating in a
clinical trial should view the Understanding Clinical Trials fact sheet on the
Lymphoma Research Foundation’s (LRF’s) website at
lymphoma.org/publications, talk to their physician, or contact the LRF
Helpline for an individualized clinical trial search by calling (800) 500-9976
or emailing [email protected].
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Understanding The Stem Cell Transplantation Process
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Questions to Ask About a Clinical Trial
What is the purpose of this clinical trial?
Why are you recommending this clinical trial for me?
Who is sponsoring this trial (the National Cancer Institute [NCI], a
cancer center, an international study group, a state or national study
group, or a pharmaceutical/biotechnology company)?
Who has reviewed and approved this clinical trial?
Does this clinical trial include the additional use of a placebo (no
active ingredient/no intervention)?
How long will the study last? Where will it take place?
What are the risks involved?
What are the possible benets? If I benet from the intervention, will
I be allowed to continue receiving it after the trial ends?
What are my responsibilities during the clinical trial?
What kinds of additional tests, procedures, or treatments will be
performed? How many and how often?
Will I be in any discomfort or pain?
Will I be able to see my own doctor during the clinical trial?
What type of long-term follow-up care is part of this trial?
Do I have to travel to the site for follow-up care, or is all long-term
follow-up done locally?
What costs will I be responsible for? Who will pay for my
participation? Will I be paid for other expenses?
What happens if my health gets worse during the clinical trial?
46
Other Considerations and Resources
Part 4
Chapter 8: Transplant Expenses, Medical Coverage, and
Financial Support
Stem cell transplants are very expensive. Over the years, advances in
treatment have shortened the length of hospital stays for transplants,
somewhat reducing this cost. As soon as stem cell transplant becomes a
consideration in treatment, patients are encouraged to discuss these
nancial issues with their healthcare team. Transplant centers have staff who
are available to help navigate patients’ nancial questions, including
insurance and nancial assistance.
For certain types of cancers, most health insurance companies cover some
of the transplantation costs, and they may also cover some of the costs
incurred once the patient has returned home from the hospital after the
procedure. Health insurance companies covering transplant costs tend to
cover these costs when the transplant meets their criteria of what they
consider to be “medically necessary,” and the patient also meets other
criteria required for coverage.
Before undergoing a medical procedure, patients should check with their
medical insurance provider to see what costs the provider will cover and
what costs the patient will be responsible for paying. If there is a dispute
about coverage or if coverage is denied, patients should ask the insurance
carrier about their appeals process. If a claim is repeatedly denied, the
patient should contact their state’s insurance agency.
Patients in need of nancial assistance should talk with their doctor and
social worker about available options and how to enroll in an appropriate
program. Cancer organizations like the Lymphoma Research Foundation
(LRF) offer limited nancial assistance to patients who qualify. Some
pharmaceutical companies may have patient assistance programs in place
that help to provide drugs to qualifying patients, as well. Federal government
Part 4 — Other Considerations and Resources
47
Understanding The Stem Cell Transplantation Process
programs such as the National Cancer Institute’s Cancer Information Service
can provide further information regarding nancial assistance at
(800) 422-6237.
To learn more about nancial aid options, view LRF’s Resources for Financial
Assistance fact sheet at lymphoma.org/publications, or contact the LRF
Helpline at (800) 500-9976 or [email protected]. LRF provides
resources for nancial assistance through which the patient may qualify for aid
related to care for his or her lymphoma.
48
Other Considerations and Resources
Part 4
Chapter 9: Resources
The Lymphoma Research Foundation (LRF) is here to help. We have
prepared a sample Transplant Journey Checklist and Lymphoma Care Plan
that can be used to help document your journey. These resources are
available online at lymphoma.org/publications or by contacting the LRF
Helpline at (800) 500-9976 or [email protected].
A Transplant Journey Checklist
This checklist was developed as a general guideline based upon common
experiences. However, patients may need to adapt it during discussions with
their transplant team.
8 Weeks Before Transplant
Develop and stick to a solid nutritional and physical tness plan.
Have a dental cleaning in preparation for being unable to do so during the
recovery period.
Secure a legal Will, Living Will, Advanced Directive, Durable Power of
Attorney, and Healthcare Power of Attorney.
Investigate health insurance coverage of transplant and communicate with
the transplant facility coordinator.
If needed, develop a transplant payment plan coordinated through health
insurance, Medicare, or a related provider.
Select, educate, and train the primary transplant caregiver and any
secondary caregivers.
Ensure that family, friends, associates, and all those affected are aware of
the approximate dates during which normal activities will be limited.
Share the transplant procedure and recovery schedule with work, school,
and other points of contact normally associated with activities of daily
living.
If preservation of fertility is a concern, make arrangements for appropriate
Part 4 — Other Considerations and Resources
49
Understanding The Stem Cell Transplantation Process
consultation to discuss freezing of eggs, sperm, or embryos or other
fertility-sparing treatments.
Contact the Lymphoma Research Foundation (lymphoma.org) and Be
The Match (BeTheMatch.org/patient) for free programs and resources to
prepare you for transplant and the post-transplant period.
2–3 Weeks Before Transplant
Maintain the nutritional and physical tness plan.
Undergo an overall health assessment to ensure tness for high-dose
chemotherapy and stem cell transplantation.
Central line or port is placed in chest for use in chemotherapy, stem cell
infusion, blood testing, and administering drugs.
Growth factors are given to the patient (autologous) or the donor
(allogeneic) to stimulate stem cell growth.
Stem cells are collected from the patient or the donor and stored for future
infusion.
High-dose chemotherapy with or without radiation to kill lymphoma cells
begins.
1 Week Before Transplant
High-dose chemotherapy with or without radiation continues; duration of
treatment may vary.
Patient is admitted to hospital/transplant center to rest before the
procedure.
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Other Considerations and Resources
Part 4
Transplant Days 0–20
Day 0: Infusion of stem cells through the central line or port.
Days 0 to 6: The patient feels generally “low” due to the effects of
chemotherapy, which may include fatigue, nausea, loss of appetite,
and soreness in mouth and throat. Blood counts are low, and the risk of
infection is high.
Days 7 to 10: These are often the most difcult days. Engraftment is
beginning to take place, and careful precautions must be taken to prevent
infection until blood counts rise. Visitors to the hospital room should be
strictly limited.
Days 10 to 14: The patient may begin to feel better because white and red
blood cell counts are beginning to rise.
– When white blood cell levels are steady for three days in a row, the
transplant is considered engrafted.
– Another one to two weeks are required for red blood cells and platelets
to stabilize.
Days 12 to 35: Hospital discharge times vary widely depending on the
recovery process. After the stem cell infusion, blood levels slowly return to
normal, and other discharge criteria must also be achieved in order to be
sent home.
Day 30 (Return Home After Transplant)
The primary caregiver and any secondary caregivers are in place. The
patient will need a caregiver available around the clock for approximately
one to two weeks after discharge.
Generalized lethargy (low energy levels) is normal as blood counts
continue to return to normal.
A thermometer should be kept on hand to check temperature if fever is
suspected.
The caregiver should report blood in urine, stool, or unusual vaginal
bleeding as well as bruising and skin rashes.
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Understanding The Stem Cell Transplantation Process
For autologous transplant recipients, the central line or port may be
removed at this time. For patients who received an allogeneic transplant,
the device may need to be kept in place for another 1–2 months. If a
central line is still in place, it should be regularly ushed and cleaned.
Exposure to possible infection must be kept to a minimum. Crowded or
enclosed spaces should be avoided, and people with infections should not
visit the patient. Other infection control practices, including guidelines for
contact with pets, will be provided by the treatment team.
Maintain a structured nutritional and physical exercise plan.
Reintegrate gradually into the normal activities of daily living.
Attend follow-up visits to the doctor, transplant center, and/or oncologist.
Return to 100% health status may require a few weeks to a few months.
3–4 Months
Many patients may be able to return to work in this time frame, but the
exact date must be determined in consultation with the healthcare team.
Hair may begin to regrow.
Year 1 “The New Normal”
Energy levels and stamina may remain low for up to a year, but some
patients recover much sooner.
52
About the Lymphoma Research Foundation
Part 4
Lymphoma Care Plan
The Lymphoma Research Foundation is pleased to provide this Lymphoma
Care Plan as a resource and guide to help patients and their physicians
discuss and document the cancer experience. Keeping your information in
one location can help you feel more in control during and after treatment.
Patients should complete this form with their care team. For copies of the
Lymphoma Care Plan, please visit lymphoma.org/publications or contact the
LRF Helpline at (800) 500-9976 or [email protected].
53
Understanding The Stem Cell Transplantation Process
ABOUT THE LYMPHOMA RESEARCH FOUNDATION
The Lymphoma Research Foundation (LRF) is the largest lymphoma-specic non-
prot organization in the United States; the Foundation’s mission is to eradicate
lymphoma and chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL)
and serve those touched by this disease. Through a national education program,
innovative research portfolio and numerous outreach and awareness opportunities,
we remain dedicated to serving patients with lymphoma and CLL/SLL and to nding
a cure.
Awareness and Outreach
LRF offers numerous advocacy, awareness and fundraising programs—including
the signature Lymphoma Walk program and Team LRF—which allow members of
the lymphoma community to become involved with the organization and support the
LRF mission. The LRF Advocacy Program provides volunteer advocates with the
resources necessary to raise attention and support for those public policies most
important to the lymphoma and CLL/SLL community. There are currently more than
5,000 LRF advocates in all 50 states and the District of Columbia.
Education Resources and Support Services
LRF provides a comprehensive series of expert programs and services for people
with lymphoma and their caregivers, including: Clinical Trials Information Services;
Publications focused on each lymphoma subtype and different treatment options;
Financial Assistance Resources; In-Person Education Conferences; LRF Lymphoma
Helpline; Lymphoma Support Network; Mobile App (lymphoma.org/mobileapp);
Teleconferences; and Videos, Webcasts, and Podcasts. All programs and materials
are offered free of charge. Learn more at lymphoma.org.
Professional Education
LRF is committed to educating healthcare professionals on the latest developments
in lymphoma and CLL/SLL diagnosis and treatment. The Foundation offers a wide
range of lymphoma-focused continuing education activities for nurses, physicians,
and social workers, including workshops, conference symposia, and webcasts.
Research
LRF is focused on nding a cure for lymphoma and CLL/SLL through an aggressively
funded research program and by supporting the next generation of lymphoma
investigators. LRF supports Clinical Investigator Career Development Awards,
Lymphoma Fellowships, and several disease-specic research initiatives. These
efforts are led by the Foundation’s Scientic Advisory Board (SAB), comprised of 45
world-renowned lymphoma experts. The Foundation has funded nearly $60 million in
lymphoma-specic research.
Contact Information
Helpline: (800) 500-9976
Website: lymphoma.org
Lymphoma Research Foundation
(LRF) Helpline and Clinical Trials
Information Service
CONTACT THE
LRF HELPLINE
Trained staff are available to answer questions
and provide support to patients, caregivers and
healthcare professionals in any language.
Our support services include:
• Information on lymphoma, treatment options,
side effect management and current research
fi ndings
• Financial assistance for eligible patients and
referrals for additional fi nancial, legal and
insurance help
• Clinical trial searches based on patient’s
diagnosis and treatment history
• Support through LRF’s Lymphoma Support
Network, a national one-to one volunteer
patient peer program
Monday through Friday, Toll-Free (800) 500-9976
or email [email protected]
MOBILE APP
The Lymphoma Research Foundation’s
mobile app, Focus on Lymphoma, is a
great tool and resource for lymphoma
patients to manage their disease.
Focus on Lymphoma is the fi rst mobile
app that provides patients and
caregivers comprehensive content
based on their lymphoma subtype and tools to help manage their diagnosis,
including a medication manager, doctor sessions tool and side effects tracker.
For further information on LRF’s award winning mobile app or any of our
programs and services, call the LRF Helpline toll free (800) 500-9976,
email helpline@lymphoma.org or visit us at lymphoma.org.
The Focus on Lymphoma mobile app was recently named Best App by PR News and
is available for free download for iOS and Android devices in the Apple App Store
and Google Play.
FOCUS ON LYMPHOMA
A Guide for Patients,
Caregivers, and
Loved Ones
Understanding
The Stem Cell
Transplantation
Process
Understanding
The Stem Cell Transplantation Process
This patient guide is supported through
unrestricted educational grants from:
Contact the Lymphoma Research Foundation
Helpline: (800) 500-9976
Website: lymphoma.org
July 2018
