Download Allogeneic Bone Marrow Transplant (BMT)

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Allogeneic Bone
Marrow Transplant (BMT)
Handbook
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Welcome.............................................................................................................................................................................1
Transplant Team.............................................................................................................................................................2
Transplant Team Contact Numbers...................................................................................................................3
To Do List............................................................................................................................................................................4
Pre-Transplant Planning
Types of Transplant.......................................................................................................................................................5
System Support..............................................................................................................................................................6
Transplant Planning
Baseline Testing......................................................................................................................................................... 7-8
Informed Consent: PAR (Pre-Admission Review).......................................................................................8
Your Role in A Successful Transplant............................................................................................................ 8-9
Financial and Insurance Considerations.........................................................................................................9
Transplant Related Costs........................................................................................................................................10
Central Venous Access............................................................................................................................................11
TriFusion Catheter Care...........................................................................................................................................12
Bard TriFusion Catheter Care........................................................................................................................13-15
Obtaining the Stem Cells...............................................................................................................................15-16
Conditioning Regimen...........................................................................................................................................16
Chemotherapy Side Effects...........................................................................................................................16-17
Radiation Therapy......................................................................................................................................................17
The Transplant
The Day of Admission..............................................................................................................................................18
Welcome to the BMT Unit..............................................................................................................................18-20
The Transplant Process.....................................................................................................................................20-21
Post Transplant
Possible Complications....................................................................................................................................21-23
Neutropenic Diet........................................................................................................................................................23
Discharge Planning (hospital to home).................................................................................................23-26
Eating and Dining Out.....................................................................................................................................27-28
Long Term Follow-up
Physical Fitness............................................................................................................................................................29
Sexuality and Reproduction.........................................................................................................................29-30
Patient and Caregiver Resources...............................................................................................................31-33
Common Questions and Answers............................................................................................................34-36
Glossary of Medical Terms..............................................................................................................................37-38
References and Additional Recommended Readings........................................................................39
Questions to Ask the Doctor........................................................................................................................40-42
Notes...........................................................................................................................................................................43-45
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WELCOME
AN INTRODUCTION TO THE FLORIDA CENTER FOR CELLULAR
THERAPY ADULT BONE MARROW AND STEM CELL
TRANSPLANT PROGRAM AT FLORIDA HOSPITAL
You or a member of your family may be considering a stem cell transplant, either bone marrow
or peripheral blood, at the Florida Center for Cellular Therapy (FCCT). We are committed to your
care and wellbeing and look forward to getting to know you. A transplant is a team effort, with
you and your primary caregiver being important members of the team. The decision to have a
transplant is sometimes a difficult one and requires a large commitment from you, your family
and your caregiver(s). Our team is here to provide you with direction and support throughout
the phases of transplant. The FCCT team members include physicians, physician assistants
and ARNPs, nurses, social workers, psychologists, respiratory therapists, lab staff, coordinators,
dieticians, a chaplain and volunteers who all work together to make your transplant successful.
This handbook is designed to provide you with general information about the transplant
process at our center. We hope this guide, along with individual instruction from your doctor,
can help relieve some anxiety and uncertainty you and your family may be experiencing. Please
read this information and write down any questions you may have. We believe it is important for
you, your family and caregiver(s) to have as much of an understanding of the transplant process
as possible.
The Adult Bone Marrow and Stem Cell Transplant Program at FCCT began in 1996. We currently
perform about 100 adult transplants each year for many different diagnoses.
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The following is a list of the team members and their roles. You
will meet each member at some time during your transplant.
Attending Physicians
The attending physicians associated with our program specialize in bone
marrow and stem cell transplantation. You will be assigned a specific
physician as your primary physician, but you will be cared for by all the
physicians at some point during your transplant. Your primary oncologist
will be kept informed of the plan of care and your progress.
Nurse Practitioners and Physician Assistants (extenders)
Along with the attending physicians, there will be a group of nurse
practitioners and physician assistants that are also responsible for your
daily care. They assess your condition and collaborate with your attending
physician.
Coordinators
The coordinator that is assigned to you for your transplant will be the
primary contact for you, your family and your primary oncologist during
the transplant process. Your coordinator will provide you with a calendar to
outline your transplant plan. The coordinators with FCCT are all registered
nurses that are either certified in chemotherapy or oncology.
Assistant Coordinator
The assistant coordinator will communicate with you and arrange any
clinic appointments and testing that needs to be scheduled for your
transplant. The assistant coordinator works hand in hand with your
coordinator to make your transplant process as smooth as possible.
TRANSPLANT TEAM
Financial Coordinator
The financial coordinator works closely with you and your insurance
company to determine transplant benefits. The financial coordinator is
experienced in the insurance issues facing transplant patients and will
obtain any authorizations needed for your transplant.
Social Worker
The social worker is a valuable asset available to you and your family to
help manage the stressors that come with the transplant process. You
and your caregiver will meet with the social worker at some point in your
transplant process. The services available include counseling, support for
you and your family and referrals to other resources as needed.
Inpatient and Outpatient Nurses
The nurses in the inpatient and outpatient clinic are registered nurses
specially trained in the care of bone marrow transplant patients. The nurses
are all chemotherapy certified, as well as port certified.
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Coordinators
Tricia Wang, RN OCN..........................................................407-303-2072
Victoria Webb, RN................................................................407-303-2073
Vielka Ugalde, RN.................................................................407-303-2062
Extenders
Megan Smith, ARNP...........................................................407-303-2070
Tori Smith, ARNP..................................................................407-303-2070
Jason Balls, PA........................................................................407-303-2070
TRANSPLANT TEAM
CONTACT NUMBERS
Assistant Coordinator
Dee Dykes................................................................................407-303-7398
Financial Coordinator
Chrissy Valencia....................................................................407-303-2070
Joey Hostler.............................................................................407-303-2070
Social Worker
Paula Brumback, MSW......................................................407-303-2078
Inpatient Nurse Manager
Betty Hodge, BSN................................................................407-303-1550
BMT Physicians
Dr. Yasser Khaled, Medical Director..........................407-303-2070
Dr. Melhem Solh...................................................................407-303-2070
Florida Hospital main operator............................407-303-5600
BMT Inpatient Unit..........................................................407-303-1550
FCCT Outpatient Clinic................................................407-303-2070
Patient Financial Services (PFS)............................407-303-0500
Infusion and Observation Center (IOC)..........407-303-2011
Clinical Transition Unit (CTU)..................................407-303-1391 or 407-303-7561
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As with any major medical procedure, or even an extended stay
away from home, there are certain things that need to be handled.
The To Do List below is a good starting point of essentials to address
prior to undergoing a bone marrow transplant. However, the list can
be amended and extended to meet individual needs and situations.
TO DO LIST BEFORE
YOUR TRANSPLANT
To Do Lis
t
 Read th
is handboo
k
 Identify
a caregiver(
s)
 Arrang
e transporta
tion
 Arrang
e housing (r
ecommend
ed if more
than 1 hour
from hospit
al)
 Review
consent form
(s)
 Have a
dental exam
and have d
entist
complete d
ental release
form at least
days prior to
14
beginning tr
ansplant
 Check p
rescription
coverage fo
r post
transplant m
edications
 Make a
rrangemen
ts for child c
 Make a
are
rrangemen
ts
fo
r
pet care
 Make a
rrangemen
ts for house
hold
maintenanc
e while in h
ospital
 Speak w
ith physicia
n about fert
ility options
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What is a bone marrow or stem cell transplant?
Transplantation of blood making “stem cells” is used to treat certain
patients with leukemia, aplastic anemia, lymphomas, solid tumors or other
hematologic disorders. The source of these “stem cells” can be either from
the bone marrow or the peripheral blood. It is important to know what
bone marrow is in order to understand bone marrow transplantation. Bone
marrow is the spongy substance found inside bones. It resembles blood
and actually is the factory where stem cells develop. Blood cells made by
bone marrow are:
Stem Cells:
Immature cells found in the bone marrow and peripheral blood that
develop into red blood cells, white blood cells and platelets.
Red Cells: Cells that carry oxygen throughout your body that is needed to supply
your cells with energy.
White Cells:
Cells that fight infections and make up the immune system. There are
many types of white blood cells.
Platelets:
Cells that clot blood and stop bleeding.
The transplant procedure usually involves conditioning the patient
with high doses of chemotherapy, with or without radiation, to destroy
cancer cells. The conditioning regimen is designed to treat the disease.
Conditioning may also kill any remaining normal bone marrow cells. You
are then “rescued” by the infusion of healthy bone marrow using either
a donor’s or your own marrow. These cells are previously harvested and
frozen or fresh cells from your donor.
PRE-TRANSPLANT
PLANNING
TYPES OF TRANSPLANTS
Types of Transplants
The type of stem cell transplant performed depends on the person who
donates the marrow. Your doctor will discuss what type of transplant is
available for you. There are three basic types of stem cell transplants:
Allogeneic:
This can either be a related donor from a genetically matched family
member, usually a brother or sister. A donor can also be found in one of
the worldwide donor registries such as National Marrow Donor Registry.
Genetic matching called HLA matching is done from blood samples.
Autologous:
Stem cells are collected from you during remission and frozen for infusion
later.
Syngeneic:
The person donating the stem cells is an identical twin.
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Primary Caregiver
One of the requirements for stem cell transplant is that you have a
designated “primary” caregiver. This family member and/or friend will
be caring for you 24 hours a day after your discharge from the hospital.
Sometimes a “team” approach can work as help for the primary caregiver.
Caregiver(s) are responsible for providing the necessary transportation to
clinic appointments, monitoring temperature and alerting the physician of
any change in the patient’s condition.
Trifusion line flushing and dressing change will be taught to you and your
caregiver after your discharge from the hospital. It is essential that you and
your primary caregiver be committed and dependable team members.
You and your caregiver will be asked to sign an agreement describing their
roles and responsibilities.
Chapel and Pastoral Care
Spiritual beliefs can be a great source of strength and comfort to you and
your family. The Florida Hospital chaplain works closely with churches
throughout the community to provide pastoral support and services. The
chaplain will also be happy to stay in touch with your church and pastor
while you are admitted in the program. If you don’t have your own pastor,
one from a denomination of your choice will be glad to visit you while you
are a patient at the BMT unit.
PRE-TRANSPLANT
PLANNING
SYSTEM SUPPORT
Our chapel, located on the first floor near the lobby, is available at all times
for prayer and meditation. For information about spiritual support services,
call the chaplain at (407) 303-1553. The chaplain who works closest with
the BMT program is Niesha Steinke.
Social Work
The Florida Hospital Cancer Institute provides oncology services to every
clinic including the BMT unit. These services are available to you at no extra
charge during diagnosis, the actual transplant procedure, post-transplant
and follow-up, whether you are outpatient or inpatient. These services
assist patients with the practical and emotional challenges faced when
undergoing a stem cell transplant, such as:
• Individual and group counseling. Get support and education to deal with
anxiety or depression during the period of illness adjustment, for both
patient and caregiver
• Stress management information
• Home health care, hospice or other in-home care support referrals
• Information about advanced directives, living wills, health care power of
attorney, etc.
• Assistance in obtaining medical equipment and supplies
• Assistance in accessing funding from support organizations (financial
disability information, medication assistance programs, as well as income
interpretation issues)
• Lodging referrals during the treatment portion of post-transplant clinic
protocols
• Transportation information
• Resources for wigs, prosthetic devices, etc.
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• Referrals to community mental health professional for long term care
follow-up
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BASELINE TESTING
Prior to a transplant, you will be expected to undergo several tests to
evaluate your physical condition and disease status. These tests will help
the medical team determine whether you are a candidate for bone marrow
transplantation and are in adequate physical health.
You must meet certain criteria to participate in treatment protocols. You
may have the following tests ordered for you, as well as other tests specific
to your plan of care, PRIOR to your bone marrow transplant:
MUGA Scan or Echocardiogram (ECHO)
These tests measure how well your heart can pump blood through your
body. If you are having a MUGA scan a special dye will be administered
through your veins. Shortly after the injection of dye, pictures are taken
of your heart while you are lying down. This test takes about 60 minutes.
If you are having an ECHO an instrument that transmits high-frequency
sound waves called a transducer is placed on your ribs near the breastbone
and directed toward the heart. The ECHO machine converts these impulses
into moving pictures of the heart.
Electrocardiogram (EKG)
This painless, non-invasive test tells your physician about the electrical
activity of your heart. It involves putting sticky pads with electrodes on
your arms, legs and chest. You will lie still on a flat bed for about 10 minutes
during the test.
Skeletal Survey
You may also undergo another pre-transplant test called a Skeletal Survey.
You will lie flat on a table while pictures of different areas of your body are
taken with an X-ray machine.
CT Scan/PET Scan
TRANSPLANT
PLANNING
Depending on the type of disease you have, you may need to have a CT
Scan/Pet Scan. During this test, you will lie flat on a table which moves
through a doughnut shaped X-ray like machine. Please notify your nurse/
physician if you have an allergy to contrast dyes, iodine or shellfish.
Pulmonary Function Test (PFT)
PFT’s are done to determine the amount of air taken into your lungs with
each breath, the amount of air that is let out or exhaled, and the speed at
which the air is exhaled. This test helps the physicians’ determine whether
there are any abnormalities in your lungs prior to transplant.
Chest X-ray
An X-ray of your chest will be taken to look for abnormalities in your lungs.
During this painless procedure the X-ray technician asks you to take a deep
breath and hold it for a few seconds while the X-ray is taken.
Blood Tests and Serological Labs
Your liver and kidneys are responsible for processing substances within
your body and for removing potentially harmful materials as they
accumulate. Blood samples will be drawn to determine if your liver and
kidneys are functioning properly. Your blood will also be tested for previous
infections and prior exposure to certain viruses.
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BASELINE TESTING (CONTINUED)
Bone Marrow Aspirate and Biopsy
You will need a bone marrow aspirate and biopsy prior to transplant to
evaluate your bone marrow for cells and any evidence of disease. This
procedure is performed by numbing the hip area with lidocaine, then
inserting a needle into the hip to obtain the aspirate and bone marrow.
This is not considered an operation so you will not be sedated. A local
anesthetic will be used to numb the site used for the aspirate and biopsy.
Creatinine Clearance
Your kidneys play a major role in helping your body to eliminate the
chemotherapy you will be given. To determine if they are functioning
properly, you may be asked to collect your urine for 24 hours. You will
be given a special container for this test and it should be kept on ice or
refrigerated.
Dental Exam
Your dentist will need to examine your mouth to see if you have any
infection or abscesses prior to transplant. A dental release form will be
provided to you for your dentist to complete.
Informed Consent PAR
(Pre-Admission Review)
TRANSPLANT
PLANNING
Once you have completed your baseline testing you will meet with your
physician and coordinator for an appointment known as your PAR. At this
appointment the physician will go over all the test results with you and
give final approval to proceed with the transplant.
You will be given an informed consent form that contains information
about the particular treatment plan, side effects of the treatment as well
as benefits and risks will be discussed. Our program conducts clinical trials
and research protocols that you may be eligible to participate in on a
voluntary basis. You will be given the informed consent form(s) for any trial
or research protocol we offer that you may be eligible to participate in prior
to enrolling. We encourage you to read the informed consent forms ahead
of time so you can write down any questions or concerns. Your signature
on the informed consents the day of your PAR means that you understand
the information in the consents and you have been given the opportunity
to ask any questions. You must sign the consent in the presence of your
BMT physician and coordinator. It gives us permission to begin treatment.
Your Role In A Successful Transplant
If a bone marrow transplant is determined to be the best treatment for you,
there are many things to be considered before making a decision to have
a bone marrow/stem cell transplant. A transplant comes with many new
responsibilities, one of the most important being a healthy lifestyle.
Some of the issues to consider post transplants include:
Clinic Visits:
You will be required to live within 1 hour of our hospital for the first 100
days post transplant. Plan on visiting the outpatient clinic at least twice a
week, possibly more often if fluids or blood products are needed.
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Your Role In A Successful Transplant (CONTINUED)
Medications:
Post transplant you may be on several medications for months to years.
These medications may be expensive so you will need to check with your
insurance for coverage. The social worker may be able to help you with
finding financial resources if needed for medications.
Follow-up Visits:
After being discharged back to your primary oncologist, you will be
required to return from time to time to our clinic for monitoring.
Financial and Insurance Considerations
Bone marrow/stem cell transplantation is a very expensive procedure.
Our financial coordinator will do everything possible to help assist you
with your insurance and obtaining any authorizations needed for your
transplant. You will meet with our financial coordinator at some point
during your transplant process.
It is your responsibility to obtain a copy of your health insurance policy
and review the details to make sure that services are covered, what your
financial responsibility for co-pays and what are the non-covered services,
both pre and post transplant.
If you have difficulties or issues reviewing and understanding your policy
you should contact the member services department with your insurance
company. Most insurance companies have special Transplant Case
Managers that are assigned for transplants.
It is extremely important that you notify our financial coordinator
immediately of any change or possible change to your insurance
coverage, this could significantly impact your transplant approval process.
We strongly encourage patients NOT to change insurance companies
during the transplant process unless absolutely necessary. If this is
unavoidable you need to contact our financial coordinator as soon as
possible.
TRANSPLANT
PLANNING
Co-pay/Coinsurance:
Most insurance companies require patients to pay a co-pay or coinsurance
for each office visit. A co-pay is a set amount applied towards the patient’s
charges for an individual date of service. A coinsurance is a percentage
of the daily billed charges that the insurance has deemed the patient be
responsible for. These amounts vary with each insurance company and
plan. Depending on your insurance, you may also have a deductible, which
is normally associated with outpatient services, not including office visits.
The payments applied toward the deductible are accumulated over a oneyear period, and begin again at the beginning of each calendar year. It is
the policy of the Florida Center for Cellular Therapy to collect all co-pays in
full at the time of check-in for each office visit.
Account Balances:
Occasionally your insurance will not cover the entire amount for a service
rendered. In this case, you as the patient will be responsible to pay the
remainder of the billed amount. It is your responsibility as the patient to
make payments to your account at each office visit.
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Transplant Related Costs
Hickman Line (TriFusion) Supplies:
Once the trifusion line is placed, you will need supplies at home to care for
it correctly. These supplies are generally provided by a home health service,
and the cost is approximately $300 for a one-month supply. Your insurance
may or may not cover the cost of these supplies.
Lodging:
Depending on how far away you live from our center, you may need to
secure lodging while you are receiving treatment. There are many hotels
in the area, some of which have generously offered discounted rates
to our patients. You may also be able to find lodging with a charitable
organization in the area. Our social worker can help you find lodging
should you need it at any time during your treatment.
THE PATIENT IS ULTIMATELY RESPONSIBLE FOR ANY COSTS NOT COVERED
BY THE INSURANCE. (Please see List of Medications That May be Prescribed
after Transplant)
Financial Matters
Now that you are aware of the costs associated with a bone marrow
transplant, there are places for you to turn for help. Some options available
to you may include:
Social Security Disability (SSDI):
TRANSPLANT
PLANNING
If your illness prevents you from working for one year or longer, you could
be eligible for social security disability. Discuss this with your physician,
then contact your local Social Security office or call 1-800-772-1213 for
more information.
The Patient Advocate Foundation:
This is a non-profit group that provides information for assistance with
insurance, medical bills, employment and financial matters. You can
contact them at 1-800-532-5274 or www.PatientAdvocate.org.
Leukemia and Lymphoma Society:
This not-for-profit organization has limited help with reimbursement of
travel. For those with insurance they offer a co-pay assistance program for
medical treatment. Please contact them for more information at
1-877-557-2672 or www.LLS.org.
These are just a few programs available. Our social worker is available to
help you in contacting the appropriate organizations to provide you with
the help you need.
If you have any questions about your financial responsibility or
payment of your charges to our center, please do not hesitate
in contacting our office 407-303-2070.
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Central Venous Access
Once your baseline testing is complete, and you are ready for your bone
marrow transplant, you will need to have a central venous catheter placed
in your chest. This catheter is used for all patients under-going a stem cell
transplant.
The catheter is a hollow, silicone (plastic) tube similar to intravenous
tubing. The catheter is inserted through a small incision in the upper chest.
It is then threaded into a large vein that empties into the heart. Once in
the vein the catheter is tunneled under the skin to the lower chest where
it exits. Line insertion is done in our Interventional Radiology department
and an outpatient procedure. You will receive medication to make you
sleepy, but you will not be receiving a general anesthesia. You will be in
recovery for several hours after line insertion; then you will be directly
admitted to the BMT unit.
You may feel some discomfort after your catheter is inserted, but it usually
goes away in a day or two. The catheter will probably be left in place for
weeks or possibly months following your transplant. You and/or your
designated primary caregiver will be taught how to care for your catheter
at home. Because the catheter is a direct line into your blood system, it is
important to prevent it from becoming infected. Please see “catheter care”
instruction sheet section for proper care of your catheter.
Central Venous Lines
B
Plastic
Catheter
Entrance Site
Entrance Site
TRANSPLANT
PLANNING
Plastic Catheter
A
Central
Arteries
Central Veins
Heart
Routes: A - Subclavian // B. Jugular
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TriFusion Catheter Care
Your line requires routine care and maintenance. Without proper care there
is a risk of infection and other problems. Please follow the instructions on
this handout carefully for proper care of your line. When your therapy is
complete, your line is usually removed. Please check with your doctor to
discuss having your line removed.
Robust Luer
Connections
Color-coded Clamps
StatLock* Compatible
Trifurcation
Polyester In-growth Cuffs
Carbothane* Catheter
TRANSPLANT
PLANNING
Designed for Overthe-Wire Placement
Staggered Tip
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Bard TriFusion Catheter Care
Read these instructions before you start. Follow them step by
step as you do your catheter care.
Things to Remember:
• Catheter care should be done in a clean, dry place away from food,
drafts, children or animals.
• Do not care for your line in the bathroom
• Clean surface area where your supplies will be placed
• Remove any jewelry
• Use a liquid antibacterial soap in a pump dispenser
• Always wash your hands for 1-2 minutes under running water before
touching your line
• Use a paper towel to dry hands and turn off water
• When flushing the lines or changing the caps, take care of the lines
patriotically by color (red, white, blue)
Supplies you will Need:
• CVL Dressing Change Kit (5 or enough to last until your next clinic visit)
• Caps for changing caps on lumens
• 1 box of prefilled heparin flush solution
• 1 box of prefilled normal saline solution
• 1 box of alcohol pads
• 1 box of gloves (disposable exam or surgical gloves)
• Surgical face masks (optional)
• Syringes (most home health agencies supply pre-filled syringes)
TRANSPLANT
PLANNING
Preparing to Flush the Catheter:
Remember that most home health agencies supply pre-filled syringes
Note that the catheter is flushed every 24 hours and after each use
• Clean work area with alcohol
• Wash hands with a liquid antibacterial soap
Gather Supplies:
1. Heparin 1:10 (10 units per ml)
2. You will need 2ml/20units for each lumen
3. Saline flush
4. Alcohol pads (many)
Step by Step Instructions for Flushing the Catheter:
1. Clean the injection cap of the first lumen with an alcohol swab for
approximately 60 seconds. Let the alcohol air dry. Hold the cap so it does
not touch anything. (Re-clean the cap if it touches anything during the
process.)
2. Take the Luer Lock Cap off the first 10 ml saline syringe. Remove all air
bubbles in the syringe. Twist the syringe onto the injection cap. Open the
catheter clamp and inject the saline. Close clamp. Remove the syringe
and place in normal waste container.
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Bard TriFusion Catheter Care (CONTINUED)
3. Take the Luer Lock Cap off the first heparin filled syringe. Remove all air
bubbles in the syringe. Twist the syringe onto the injection cap. Open the
catheter clamp and inject the heparin. Close clamp. Remove the syringe
and place it into the normal waste container.
4. Repeat for other two lumens.
Flushing the lines should be done every day. You do not need to check for a
blood return as this will be done at your clinic visit.
If resistance is met when flushing the catheter, DO NOT FORCE. Check to
make sure the catheter is not clamped shut. If not clamped and it will still
not flush, call the FCCT clinic for further instructions.
Preparing to Change the Dressing:
· Remember that transparent dressings must be changed every 7 days or as
needed.
· Note that gauze dressings must be changed daily.
· ALWAYS change any dressing that is loose, wet or soiled.
· Don’t forget to clean the surface area where supplies will be placed with alcohol
Gather Supplies:
Dressing kit / Surgical mask for patient/self / Waste can
Step by Step Instructions for Changing the Dressing:
TRANSPLANT
PLANNING
1. Be sure patient/self has put mask on.
2. Wash hands with a liquid antibacterial soap.
3. To remove the old dressing:
• Carefully loosen outer edges.
• Anchor lines of lumen with one hand while peeling dressing toward
the insertion site to remove.
• Discard dirty dressing into waste container.
• Wash hands again with liquid antibacterial soap.
Note: DO NOT touch the catheter site with your hands. DO NOT use
scissors to remove old dressing.
4. Open the dressing change kit. Touch only the outer corners of the kit. Do
not touch the contents with your hands.
5. Remove the mask from kit and keep for later; remove sterile glove packet
without touching the contents of the kit.
6. Open sterile drape touching only the edges. Holding onto the outer
edges of the drape carefully place the drape on the table. Pick up the
remaining dressing change kit and dump the contents onto the center of
the sterile drape without touching the drape.
7. Lay sterile glove packet on the table with the cuff end facing you. Open
the glove packet and put on the sterile gloves. Do not contaminate the
gloves. Remember, “sterile touches sterile”.
8. Pick up the Chloraprep applicator. Pinch the wings on the applicator to
release the antiseptic. Do not touch the sponge with your fingers. Wet the
sponge by pressing and releasing the sponge against the insertion site.
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9. Clean the area with the Chloraprep by moving in a clockwise circular
motion from insertion site out to cover dressing area; do not go back over
area already cleaned. Allow to air dry for 30 seconds. It may take longer
than 30 seconds for the area to dry. Do not blot, wipe, fan or blow on the
area for any reason after the Chloraprep has been applied.
9/23/13 5:30 PM
Bard TriFusion Catheter Care (CONTINUED)
ALWAYS Maintain a Sterile Field
• Place only sterile items within the sterile field.
• Areas outside the drape are considered non-sterile.
• Open and dispense items onto the sterile field without contaminating them.
• Do not allow unsterile hands to reach across the sterile field or touch sterile items.
• When in doubt about whether something is sterile, consider it not sterile.
Step by Step Instructions for Dressing Application
1. Pick up the dressing. Remove paper backing half-way.
2. Lay the dressing with the dressing centered over the insertion site and
stitches. Gently press the dressing in place while removing the rest of the
backing.
3. Remove gloves.
4. Write the date on the edge of the dressing.
5. Wash your hands.
Step by Step Instructions for Changing the Injection Cap
1. Wash hands and put on gloves.
2. Open the cap package by peeling back the paper. Leave the cap in the
package.
3. Make sure catheter is clamped.
4. Remove the old cap. Hold the catheter so it does not touch anything.
Clean with alcohol swab for 60 seconds.
5. Pick up the new cap. Take off the protector tip and screw the cap into place.
Remember, caps need to be changed every 7 days.
Call the doctor or clinic if you notice any of the following:
• Redness or swelling
• Drainage
• Pain or tenderness
• Fever over 100.5 ˚
• Leaking at insertion site or anywhere along the catheter
• Cannot flush the catheter
• Broken stitch
• Pain or swelling in the neck, arm, ear or insertion site
TRANSPLANT
PLANNING
Obtaining the Stem Cells
Bone Marrow Harvest
Bone marrow is drawn from the donor’s hip bone using a special syringe
and needle. This procedure is done in the operating room, usually under
general anesthesia to ensure that the donor will experience no pain when
the stem cells are withdrawn. The needle puncture sites may be tender for
up to a week after the harvest. Some stiffness and difficulty in walking will
last for a day or so.
Donors are usually released from the hospital the next day. Less than 5% of
the donor’s marrow is removed and the donor’s marrow grows back on its
own. Every donor is temporarily anemic (low red cell count) because 20% of
the donor’s red cells are removed.
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Obtaining the Stem Cells (CONTINUED)
Peripheral Blood Stem Cell Harvest
The preferred method to harvesting bone marrow involves removing stem
cells from the donor’s peripheral circulation. To prepare for peripheral blood
stem cell (PBSC) harvesting, the stem cells need to be “primed” or stimulated.
This is accomplished with the administration of growth factors, (i.e., Neupogen
– growth factor) which causes the stem cells to increase their number in
circulation.
Once primed, PBSC’s are obtained using an apheresis machine, which
removes the stem cells from circulation. The procedure involves the donor
being connected to the apheresis machine for a period of approximately
6 hours while the stem cells are automatically filtered and collected.
The remaining blood components (i.e., red blood cells and platelets) are
returned to the donor.
Conditioning Regimen
Conditioning regimen and preparative regimen are used interchangeably
and are both names for your transplant chemotherapy and/or radiation
therapy. You may be placed on a treatment plan or a research protocol.
The treatment plan or research protocol is specific to your disease. Your
physician will decide which protocol is best for you and discuss the entire
protocol or treatment plan with you prior to signing consents in the
outpatient clinic. You will be given a calendar prior to your admission on the
unit that will tell you what medications or treatments you will be receiving.
All protocols or treatment plans are not the same.
TRANSPLANT
PLANNING
Chemotherapy is an important part of the protocol and will consist of
one or more different types of medications, depending on the type of
disease you have and the type of transplant you are receiving. You will
be given specific drug education sheets with information regarding the
chemotherapy in your regimen. The chemotherapy is given on a special
schedule that is thought to be best for killing your cancer and yet minimally
harming your body.
Chemotherapy Side Effects
The doses of chemotherapy used in a transplant regimen are much higher
than those you may have received before. To eliminate cancer cells in your
bone marrow, as well as your body, it is necessary to use the highest doses
possible. Because of this there is a possibility that you may experience more
severe and different side effects than the ones you may have had in the
past. Chemotherapy may kill cells other than cancer cells. It may damage
normal, fast growing cells such as those in your mouth, throat, bowels, skin,
hair and bone marrow.
During chemotherapy, you may experience the following:
· Mouth or throat sores
· Nausea and vomiting · Diarrhea
· Change in the color of your skin
· Loss of hair
· Very low blood counts
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Chemotherapy Side Effects (CONTINUED)
You will be given medications to minimize the nausea and vomiting. Pain
medications are available if you develop sores in your mouth or throat.
Good oral hygiene is extremely important and will help limit the number
of mouth or throat sores. A nurse will work with you to develop an oral
hygiene care plan once you are admitted to the hospital. If you should
develop diarrhea or constipation, we will use medications to help correct
the problem.
Hair loss during treatment is very likely. If desired, you may wear a cap,
turban or wig. The hair loss is temporary and should grow back within a few
months.
Chemotherapy affects other organs of the body, such as kidneys, liver, heart
and lungs. Although severe side effects are infrequent, they can progress
and cause complications such as veno-occlusive disease of the liver,
kidney failure, heart palpitations and stiffening of the lungs. Your transplant
physician will closely monitor organ function during your treatment.
Radiation Therapy
Radiation therapy (or irradiation therapy) is a part of some transplant
conditioning regimens. There are two types of radiation:
• Total body irradiation (TBI) given to the entire body
• Total lymphoid irradiation (TLI) given to areas of major lymph node
chains, or a boost of radiation directed at certain body parts
Radiation is given by a machine that sends rays of high energy into your
body. The cells in your body are prevented from growing and multiplying
when they receive these high-energy rays.
TRANSPLANT
PLANNING
The type of radiation you may receive will be discussed with you. A consult
appointment will be made for you to meet the radiation oncology team
before your transplant admission. The team consists of the radiation doctor,
the radiation technologist and the radiation nurse.
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The Day of Admission
The day you are to be admitted to the Bone Marrow Transplant Unit
(BMTU), you will stay at home and wait to receive a call from the hospital’s
bed management department, unless you are having line placement
with our Interventional Radiology department; you will then follow the
direction given to you by your transplant coordinator. Once you receive the
call from bed management they will direct you with instructions of where
to go. You MUST arrive within one to two hours of being notified by bed
management.
Welcome to the Florida Hospital Bone Marrow
Transplant Unit
The staff of the Bone Marrow Transplant Unit would like to take this
opportunity to welcome you to our unit. We hope this information will
help you and your loved ones feel more comfortable in this unique setting.
Please do not hesitate to let us know if there is anything we can do to assist
you during your hospitalization.
What to Pack:
Please keep in mind that your stay may be 14-30 days and may extend
longer based on the transplant course. These are items that you are
welcome to bring but are NOT required.
• Comfortable clothes and sleepwear. We recommend tops that button
in the front to make it easier to access your central lines. Hospital gowns
will be provided if necessary.
• Slippers or shoes while walking around in the room or halls
THE TRANSPLANT
• Pillows or blankets (new are preferred)
• Craft, leisure activities or projects that you enjoy
• Laptops, Florida Hospital has free Wi-Fi for patients and visitors
The BMT Room:
Rooms are designed for BMT patients to lower risk of infection and to keep
them safe during their stay.
• Each room includes: nightstand, small closet, television, small refrigerator,
tray tables and private bath.
• No fresh flowers are permitted; if friends and family want to send gifts
encourage them to send cards and notes of encouragement.
• Due to HEPA filter ventilation requirements for BMT patients, room doors
are kept closed at all times. Only 2 visitors at a time are permitted in the
room.
Patient Expectations:
All BMT patients are required to follow these expectations.
• No disconnecting of IV lines, even for bathing. This helps to lower the risk
of infections.
• Walking around unit 3 times daily (morning, noon and night)
• Daily showers or bathing
• Daily mouth care includes: brushing teeth, rinsing with saline after each
meal and scheduled Caphosol rinses.
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Welcome to the Florida Hospital Bone Marrow
Transplant Unit (continued)
Visitor Guidelines:
Our visitor guidelines are meant to keep our patients safe during their stay
with us. If you have any questions please contact the charge nurse.
• Unit is open 24 hours a day to primary care givers; all other visitors are
welcome during normal hospital visiting hours of 8:30 am to 8:30 pm.
• Children and adults who have received a vaccination with a live virus
within 2 months should not visit.
• Children who visit the unit will have their temperature checked and be
cleared by an RN before entering the unit.
• ANY PERSON who has a fever, feeling ill or has an open wound or
infection should not visit the unit.
• Visitors are discouraged from eating or drinking in your room to prevent
or minimize any nausea you might experience.
• Visitors are also prohibited from using your bathroom; visitor restrooms
are outside the BMT unit.
• Family and visitor’s lounge is located at the entrance of the BMT Unit on
the 3rd floor unit.
Patient Mail:
While you are in the hospital, friends
and relatives can write to you at the
following address:
Florida Hospital
Bone Marrow Transplant Unit
601 East Rollins Ave
Orlando, Fl 32804
THE TRANSPLANT
Hand Washing:
Visitors are required to wash their hands before entering the unit as well
as when they enter and leave your room.
All staff will also be washing their hands upon entering the unit and your
room.
Nutritional Issues:
During your stay you may find it difficult to take in proper nutrition
because of the neutropenic diet restrictions and reduced appetite due to
your chemotherapy.
• We encourage you to bring your favorite foods from home; please check
with your nurse prior to bringing due to dietary restrictions.
• Your personal foods or beverages can be labeled and stored in the
refrigerator or freezer in our kitchen.
• If food is prepared at home, it must be thoroughly cooked and promptly
delivered to you.
• You will also have access to a microwave, toaster and blender to use for
food preparations.
• A dietician is available during the week for any questions or problems
that occur during stay.
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Welcome to the Florida Hospital Bone Marrow
Transplant Unit (continued)
Unit Routines:
Our unit has many routines in place to help keep you safe during your stay.
• BMTU nurses work 12-hour shifts, 7 am to 7 pm and 7pm to 7 am. We
ask that patients and family members stay in their rooms and limit
visitors, calls to the unit and patient requests during change of shift,
6:45 am to 7:15 am and 6:45 pm to 7:15 pm. This allows time for our staff
to be updated on the patients without interruptions.
• Your nurse will do a thorough physical exam and check your vital signs
at least every 4 hours.
• You will be weighed daily.
• Your morning blood tests will be drawn between 3 and 5 am. This
enables physicians to review the results prior to their daily visit.
• All food and fluid consumption should be reported to nursing along
with all output including urine, stool and emesis (vomit). This is to keep
track of fluid retention, constipation and diarrhea that can occur during
your stay.
Phone Calls Regarding your Condition:
We suggest that you choose a spokesperson that will keep your family
and friends informed of your condition. This is meant to reduce the
number of interruptions for the nurses caring for you. Your safety and
wellbeing is our main concern.
THE TRANSPLANT
Phone calls to your room can be made with the following number:
407-303-5600. Local calls made from your room must begin with 91.
To make a long distance call, dial 0 to reach a hospital operator.
The direct line to the BMT Unit is 407-303-1550.
The Transplant Process
The bone marrow transplant process is an individualized plan. The
physician and the bone marrow transplant coordinator will go through
your specific schedule with a calendar for reference, so you can visualize a
basic plan.
After your chemotherapy and/or radiation therapy is complete, you will
have one to several days of rest. The day of your transplant is day “0” (zero)
and every day thereafter is referred to as day +1, day +2 and so forth. The
actual transplant is very similar to a blood transfusion. The stem cells or
marrow will be delivered to your room in several bags. Your physician or
nurse will administer the stem cells/bone marrow through your central
catheter. The transplant may take anywhere from 1 to 4 hours. You will be
placed on a monitor during this time.
You may experience some side effects from DMSO, a preservative used
to protect the cells if they are frozen. You will be given medication before
receiving your cells to minimize these effects. You may notice a garlic-like
taste in your mouth that will remain on your breath for 2 or 3 days; your
urine also may become red-colored for 24 hours. The DMSO can cause
other problems, such as shortness of breath, wheezing and stomach
pains. These side effects occur rarely; however, your nurse and physician
will monitor you closely during the transplantation.
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THE TRANSPLANT > The Transplant Process (CONTINUED)
Engraftment
Once you have received your stem cell transplant, you are ready to face
the toughest part of your hospitalization, the waiting period. During this
phase, you may experience early side effects. Remember that all patients
are unique and not every patient will experience these side effects. It can
take anywhere from 2-5 weeks before you will see signs that your new
bone marrow is growing, this is called engrafting. It is during this time that
you will have little or no blood cells of your own, which may cause you to
experience fatigue.
Engraftment is a term used when your bone marrow begins to work and
manufacture the red blood cells, white blood cells and platelets you need.
One way to measure how well your marrow is working is through your
daily blood counts. As your red blood cells, platelets, and white blood cells
rise, you will require fewer and fewer transfusions.
The return of your immune system is a slow process. It may take up to a
year or longer before your bone marrow is completely functioning and
your immunity is fully restored. During this time you will have to continue
to protect yourself from infections.
Possible Complications
Anemia
Low red blood cell count. You may feel tired, weak and/or dizzy. You will
receive a blood transfusion if your doctor decides that your count is low
enough.
Anorexia
POST TRANSPLANT
You may experience a loss of appetite. The loss of appetite may be caused
by the chemotherapy used for transplant. You may also experience
decreased taste, mouth sores and/or dry mouth that may affect your ability
to eat.
Bleeding
Bleeding can occur when your new marrow cannot yet produce enough
platelets to prevent bruising or bleeding. During this time your urine and
bowel movements (stools) may contain blood and will need to be checked
frequently. Daily counts will evaluate your platelet level and you will be
given platelets when needed. If your hemoglobin (red blood cell count)
drops below a certain level, a transfusion of red blood cells will be required.
Constipation
Constipation is usually a side effect of poor intake, pain medications
and/or decreased mobility. Let your nurse know if you are experiencing
constipation as there are medications available.
Diarrhea
You must let your nurse know if you start experiencing diarrhea. The
diarrhea could be caused by the transplant regimen or an infection. There
are medications that are available to help with the diarrhea, along with IV
fluid replacement.
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Possible Complications (CONTINUED)
Graft-Versus-Host Disease
One of the potential complications of receiving another person’s stem cell/
bone marrow (allogeneic) is graft-versus-host disease. This is a common
side effect when the donated marrow begins to grow and recognizes
the patient’s body as a foreign place, this occurs in 5 to 70 percent of the
patients receiving bone marrow that is not their own. “Acute” graft-versushost disease develops within the first 100 days after transplant. It may
be seen as a skin rash on all or part of your body. It also can involve the
intestinal tract (causing diarrhea) and the liver. It may be mild or severe. It is
believed that a mild case of acute graft-versus-host disease has a beneficial
anti-tumor effect. “Chronic” graft-versus-host disease can develop three
to 12 months after transplant. Sometimes it follows the acute type, but
it can occur on its own. This type also affects the skin, liver and intestinal
tract, and can cause dryness of the eyes and mouth. If you are receiving
another person’s bone marrow, you will be given medications to minimize
the chances of developing graft-versus-host disease. If graft-versus-host
disease is suspected, it is likely additional testing will be preformed and
may require treatment with one or more immunosuppression medications.
Hemorrhagic Cystitis
POST TRANSPLANT
The lining of your bladder may become irritated and begin to bleed. Your
urine may become blood tinged and you may see blood clots. This can
be a frightening complication but rarely is it life threatening. To prevent
this complication you will be given additional IV fluids. During some
chemotherapy infusions (Cytoxan), you will have a foley catheter placed
into your urethra that is passed into your bladder to enable your bladder
to be emptied continually. This is to prevent the by-products of the chemo
from remaining in your bladder and possibly causing this side effect.
Infections
During and after your transplant you will be at risk for developing bacterial,
fungal and viral infections as well as reactivation of certain viruses that
reside in your body. These include: cytomegalovirus (CMV) virus, the
chicken pox or herpes simplex virus. The first three (3) months after your
transplant you will continue to be susceptible to infections, especially
viral infections. You will possibly be on anti-viral, bacterial and fungal
medications prophylactically. Even the slightest infection can become lifethreatening.
Infections can spread rapidly in your body; therefore it is important
for you to report any signs of infection to your transplant team. Your
immune system may remain weakened for approximately one (1) year
following transplant. Since your immune system is so intensely affected
by transplant, it may no longer “remember” its previous exposures to
childhood vaccinations. Therefore, you will be re-immunized with several of
your “baby shots” one (1) year after transplant. This will be discussed at your
one-year visit.
Mucositis and Stomatitis
The chemotherapy and/or radiation used for transplant can affect the
digestive tract and the lining of the mouth causing dryness, soreness
and white patches. Please let your doctor or nurse know as soon as you
experience any of these symptoms so they can be treated.
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Possible Complications (CONTINUED)
Nausea and Vomiting
The most common side effect of the chemo and /or radiation.
Chemotherapy can trigger nausea and vomiting. Let your nurse know as
soon as you start feeling nauseated so that every effort can be made to
prevent more nausea and vomiting.
Neutropenia
You can expect to be neutropenic (less than 500 neutrophils) for
approximately 2 to 3 weeks. During this time you will be placed on
neutropenic precautions since you will have such an increased risk for
infections.
Non-Engraftment or Rejection
There is a remote chance that the infused bone marrow/stem cells may
not grow and your immune system will not function. This is called nonengraftment or graft failure. Medical treatment will be discussed with
you should this occur. There is also a small chance that the bone marrow
may begin to grow and then, for whatever reason, stop growing and
become non-functional. This is called rejection. Please keep in mind
that non-engraftment and rejection are not common complications of
transplantation.
Pain
This can be a side effect of the treatment needed for transplant or your
disease.
Pulmonary complications
Your lungs will be more prone for complications such as pneumonia and
interstitial pneumonitis for several months after your transplant.
POST TRANSPLANT
Skin Changes
Skin changes are common after transplant which can include dryness,
discoloration and flaking. Your skin will be very sensitive and should not be
exposed to sun due to sunburn.
Thrombocytopenia
Low platelet count. Platelets are the cells in the blood that you’re your
blood clot to prevent bleeding. You may notice signs of bleeding during
this time and/or be placed on bleeding precautions. You will receive a
platelet transfusion if your doctor decides that your count is low enough.
Veno-Occlusive Disease
Veno-occlusive disease is a complication involving your liver. This is caused
by the high doses of chemotherapy used during the transplant. You will
be closely monitored for signs and symptoms of veno-occlusive disease. If
veno-occlusive-disease occurs, your liver may not be able to filter out the
by-products of medications or food. The treatment for this complication
includes medications, blood transfusions, careful monitoring of your liver
and kidney function. The complications of this syndrome, however, can be
life threatening and you may be transferred to an intensive care unit.
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Neutropenic Diet
Throughout your hospitalization we will be monitoring your nutritional
status because it is an important part of your care. Nutrients are important
to our body during transplant because they help all of our organs function
properly as well as assisting with the healing process. Unfortunately there
are some things in the food that we don’t want during the transplant
period, this being bacteria. The amount of bacteria in food depends
on how it is cooked or prepared and/or where it is grown. Therefore, to
maintain a reduced bacteria diet, also known as a neutropenic diet or
“no raw foods diet”, we do not allow fresh fruits and vegetables. Other
exclusions are yogurt, non-pasteurized dairy products, shellfish, pepper,
nuts and salads. Hospital trays will be ordered as reduced bacteria (also
seen described under the above names as well).
The neutropenic diet can meet the Recommended Dietary Allowances
of the National Research Council for all nutrients. Sometimes during the
actual transplant phase, patients have loss of appetite and are not able to
meet their nutritional requirement by eating alone. Our nutritionist will
monitor this closely and will work with the physicians to give you nutrients
through your central venous catheter as needed.
Discharge Planning
The following is a summary of information that you will need before you’re
discharged. The BMT team will work closely with you and your family to
help make a smooth transition from hospital to home.
POST TRANSPLANT
Preparing your home environment for discharge will include
the following:
• Vacuuming all carpets, dusting including ceilings fans.
• Bathrooms should be cleaned using a Clorox solution to disinfect and
clean any mold from tiles.
• Make sure A/C and furnace filters have been changed.
Approximately one (1) week before discharge, the nurses will begin
intensively teaching you what you will need to know in order to stay
healthy after discharge. It is important for your primary caregiver to be
present for these instructional sessions. Our objective is to ensure you and
your primary caregiver have a firm understanding of how to provide for
your care away from the hospital.
Clinic Visits
After being discharged from the transplant unit, we need to monitor you
closely. You will visit the BMT Outpatient Clinic at least twice a week to be
examined by your primary BMT physician. You may also need to visit the
clinic daily, depending on your blood counts.
Occasionally, we may need to re-admit you to the hospital to take care of
these problems. Do not be discouraged if you are re-admitted. We will readmit you only if you have a problem that requires close attention.
If you are experiencing nausea and vomiting, travel to and from your clinic
visit will be made more comfortable by carrying a wet wash cloth and plastic
bucket.
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Discharge Planning (CONTINUED)
Driving
You may not operate a motorized vehicle until given permission by your
physician. Because your blood counts will go up and down frequently, you
may be at risk for dizziness or weakness. When your blood counts stabilize,
your physician will let you know so you can resume driving.
Handwashing
We cannot overstate the importance of handwashing. Many infections,
bacterial or viral, are transmitted by hand to mouth. It is important for
you to wash your hands before eating or preparing food, before and after
using the bathroom and anytime you have touched a soiled object. It is
also important for your family and friends to wash their hands frequently.
Commercial soap is fine as long as hands are washed vigorously for at least
30 seconds. Paper towels should be used to dry hands. Hand sanitizers can
be used in conjunction with, but not in place of hand washing.
Personal Hygiene
As mentioned previously, good personal hygiene is essential to prevent
infection. It is important that you follow a hygiene routine after leaving the
hospital. You should shower daily or more often if necessary. You should
not be afraid to shower with your catheter in place. The dressing can be
kept dry by covering the line and dressing with a plastic baggie. However,
if it should become wet, the dressing should be changed immediately. We
do not recommend tub baths for our patients. Clothes should be changed
daily. Peri-rectal care is important to prevent skin breakdown and infection.
Bacteria and fungi like to grow in the mouth. It is important that you brush
your teeth with a soft toothbrush after meals and before bed. It will be
necessary to visit a dentist every 6 months following transplant with your
physician’s approval.
POST TRANSPLANT
Wearing a surgical mask is no guarantee against infections, but it may help
guard against airborne bacteria and viruses. Please wear a mask, until given
the ok by your BMT physician, after leaving the hospital when:
• You visit the outpatient clinic or a physician’s office. This will help reduce
your exposure to other sick people.
• You are in large crowds like shopping malls or theaters. These places
should be avoided during peak hours.
• When in doubt, wear your mask. Always carry extras. If a mask gets moist,
it is no longer useful. Plan to change your mask often when in public.
• Masks can be purchased at any pharmacy or medical supply store.
Monitoring Your Temperature
You will need to check your temperature twice a day for the first month or
so. This should not be done after eating or drinking as this may change the
temperature of your mouth.
You should report any temperature greater than 100.5 degrees. To
report temperature elevations, call the outpatient clinic (407-303-2070)
immediately, even if it is after hours there is someone on call 24 hours a
day. You should also check your temperature anytime you feel ill, chilled or
hot. Rinse the thermometer with soap and cold water and store in a clean,
dry package. Even if you are being treated with antibiotics you may need
additional prescriptions.
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Discharge Planning (CONTINUED)
Medications
You will be discharged from the hospital with several medications. Prior to
discharge the inpatient nurse will go over all your home medications with
you and provide you with education sheets for each medication. It is very
important that you have a plan for keeping track of your medication(s)
so that you are taking all of your medications at the correct time and not
missing any doses.
DO NOT take any over the counter medications or herbal products
including vitamins without getting approval from your BMT physician. Do
not smoke any products and avoid any exposure to smoke of any kind,
including tobacco, marijuana and enviromental smoke
Bleeding
If your platelets are low after your discharge from the hospital, you may
experience bleeding. Frequently patients need platelet transfusions in the
outpatient clinic.
The following signs or symptoms of bleeding must be reported
immediately:
• Excessive bleeding
• Prolonged nose bleeding
• Tarry, black and/or bloody stools
• Bloody urine
• Blood and/or coffee ground vomit
POST TRANSPLANT
• Prolonged vaginal bleeding
• Bleeding gums
• Excessive bruising
Exercise
Exercise is a very important part of your recovery after transplant for many
reasons. Exercise will prevent loss of muscle strength, endurance and
bone density. After discharge from the hospital you will be encouraged
to maintain an exercise regimen to assist with your recovery. Walking is
an excellent exercise that you can do either inside your home or outside,
weather permitting. Remember if it is sunny outside to use a sunscreen
with SPF30 on any exposed skin and a wear hat.
Pets and Plants
When you return to your own home, we do not recommend contact with
indoor or outdoor plants until your physician instructs you otherwise.
Bacteria and fungi grow on plants and in soil and can cause infections.
Avoid gardening, mowing the lawn and other similar activities. Pets can
carry a variety of diseases to which you should not be exposed. Do not
clean up after a pet or bring a new pet into the home. You should avoid
ALL contact with birds and reptiles and their droppings as they carry many
infections. Do not hug or kiss your animals and do not allow pets to sleep
with you. Do not come in close contact with outdoor or farm animals.
Exposure to Infections
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If at any time you come in contact with a person who has chicken pox,
shingles (herpes zoster) or measles, please contact us immediately, even if
it is only a brief exposure. We also need to know about any viral or bacterial
outbreak in your community.
9/23/13 5:30 PM
Eating and Dining Out
Following discharge from the hospital you may need to continue the
neutropenic diet as directed by your transplant physician. We have listed
examples of foods you may eat and a sample diet.
Sample Meal Plan
Breakfast
Lunch
Dinner
Orange Juice
Cream of broccoli soup
Tomato bisque soup
Canned peaches Almond-nut balls/gravy
Macaroni & cheese
Milk
Mashed potatoes
Cooked mixed vegetables
English muffin
Cooked green peas
Whole wheat bread
Scrambled eggs
Crackers
Applesauce
Margarine
Peanut butter cookies
Crackers
Jelly
Margarine
Milk
Salt
Salt
Margarine
Salt
FOODS ALLOWED
FOODS RESTRICTED
Beverages
Pasteurized milk, chocolate milk,
hot chocolate, buttermilk, eggnog,
Wolkshakes, milkshakes. Individually
packaged: coffee, tea, decaffeinated
coffee, cereal beverages and
carbonated beverages.
Unpasteurized milk, brewed
coffee.
Breads & Cereals
All packaged bread, cold cereals,
crackers, pretzels. Rolls, doughnuts,
sweet rolls, etc. should be wrapped
in plastic wrap as they come out of
the oven. Well cooked pancakes,
waffles, and French toast. Individual
packages of instant hot cereal mixed
with boiled water.
Breads not listed.
Desserts
Freshly opened packages of baked
items; as well as first serving of cakes,
cookies, pie, custard, pudding and
gelatin. Ice cream, sherbet, popsicles,
fungibles and creamsicles. Candy in
individually sealed wrappers.
Unsealed candy, soft ice cream,
non-commercial or homemade
ice cream and sherbet. Cream
pies or cakes with whipped
cream frosting.
Fats
Individually packaged margarine,
butter, sour cream, cream cheese,
salad dressing and mayonnaise. Oil
or other fats used in cooking.
Blue cheese, Roquefort cheese,
avocado dressings.
Fruits & Juices
Canned fruits and juices. Bananas
washed with soap and water and
peeled by another person.
Fresh and frozen fruits, (except
bananas) and juices. Fresh fruit
garnishes. Raisins and other dried
fruits.
Non-meat Proteins
Well-cooked meat substitutes
and eggs (except boiled eggs).
Pasteurized yogurt, cottage cheese
and cheese.
Boiled eggs; unpasteurized
yogurt and cheese.
POST TRANSPLANT
Poultry, Fish & Meat
All well-cooked poultry, fish and meat.
Cold cuts and stir-fried foods.
Potatoes or
Substitute
Cooked white or sweet potatoes,
yams. Potato chips, corn chips,
tortilla chips. Cooked rice, noodles,
spaghetti, tater tots, French fries and
hash browns.
Uncooked potatoes and pasta.
Soups
Canned and homemade wellcooked soup.
None
Vegetables & Juices
All canned, frozen or fresh
vegetables are allowed if they are
well cooked. Canned juices.
Raw or stir-fried vegetables. All
fresh salads, vegetables and
garnishes. Fresh sauerkraut.
Miscellaneous
Individually packaged salt, sugar,
jam, jellies, pasteurized honey, syrup
and nuts. Gravy, cream sauces,
peanut butter. Spices, herbs or
seasoning only if added during
cooking process.
Spices, herbs or seasonings
added to foods after cooking.
Raw honey.
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Eating and Dining Out (CONTINUED)
Safe Food Handling:
• Cook all meat well done; there should be NO remaining pink.
• Thaw all meats in the refrigerator and use defrosted meats right away, DO
NOT refreeze.
• Never leave any perishable food out of the refrigerator for over two (2)
hours, and NEVER leave foods that are mayonnaise-based, cream-based or
contain eggs at room temperature for more than one (1) hour.
• All fruits and vegetables should be washed thoroughly.
• Cook eggs completely, no runny whites or yokes.
• When microwaving foods rotate the dish several times during cooking to
prevent cold spots where bacteria can survive.
• Use separate cutting board for cooked and raw foods.
• Keep all appliances used for preparing foods clean of food particles.
• Replace dishcloths and dish towels daily.
• Do not use eggs that have cracked shells.
• Always check the “use by” date.
• Discard any leftover food after 72 hours.
• Do not use any freezer-burned foods.
Dining out:
POST TRANSPLANT
• Eating out at a restaurant is not recommended until your physician has
informed you that you can resume eating out.
• Eat early to avoid crowds.
• Ask that foods be prepared fresh if you are eating at a fast food restaurant.
• Order all meat cooked well done.
• Order all vegetables cooked and avoid fresh fruits or salads until informed
by your physician.
• Avoid eating at smorgasbords, potlucks, buffets, salad bars or sidewalk vendors.
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After you have gone from weekly, to monthly, to every three (3) months,
then every six (6) months visits, we consider it long term follow-up. We still
follow you yearly and ask that you come into the clinic for scans and blood
work. Some of these tests may coincide with your oncologist’s requests.
The following is a general summary of information that you will need
to know. Individual concerns and questions regarding your plan of care
should always be discussed with your physician.
Physical Fitness
Many complications can be prevented by following a daily exercise routine.
Exercise helps to stimulate circulation, keeps the heart and lungs working
and strengthens muscles. Light exercise every day is more beneficial than
infrequent heavy exercise.
We suggest that you follow a light exercise routine of walking, easy
jogging, bicycle riding, aerobics, calisthenics, leisurely tennis or even mild
weight lifting. Swimming is not permitted until your physician approves.
You should avoid sports that involve large crowds or that may cause injury
or bleeding. Please inform your physician before beginning any exercise
program.
Sexuality and Reproduction
Sexual activity is permitted as long as your platelet count is above 50,000
and your partner is free of infections (i.e., cold, herpes, draining sores).
Reproductive potential (return of menses, sperm count) is individual,
please consult your physician.
Sexual Activity for Women:
• Birth control should be used, although infertility is likely.
LONG TERM
FOLLOW-UP
• Practice clean, safe sex.
• Avoid anal or oral sex for six (6) months or until your physician says it is ok.
• Avoid sexual intercourse if you or your partner have or think you have a
genital infection.
• You should see your gynecologist about 3 months following transplant.
If you have been experiencing menopause symptoms like hot flashes,
vaginal dryness or difficulty sleeping, it is advised to discuss this with
your gynecologist.
• The chemotherapy and/or radiation can cause vaginal dryness and
narrowing. Using a water soluble lubricant to prevent trauma to the dry
tissue is recommended. NEVER use petroleum jelly because it can cause
an infection.
• Report any problems or concerns to your BMT physician as well as your
gynecologist.
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Sexuality and Reproduction (continued)
Sexual Activity for Men:
• Birth control should be used, although infertility is likely. Three (3)
months after transplant, you can have a sperm count done to determine
if you are sterile.
• Practice clean, safe sex.
• Avoid anal or oral sex for six (6) months or until your physician says it is ok.
• Chemotherapy and/or radiation can cause your semen to appear brown
or burnt orange with the first few ejaculations. The first few times you
engage in sexual activity you may experience pain in the testicles after
orgasm. If you continue to have brown colored discharge, pain, inability
to obtain or sustain an erection or any other problem, it is very important
to talk with your BMT physician.
• If you find that your interest in sexual activity has not returned to normal
please consult your primary physician. Chemotherapy and/or radiation
can cause a low level of testosterone. You can have your testosterone
level checked by a blood test and if it is low it can be replaced.
Sun and Ultraviolet Rays
The radiation and/or chemotherapy that you received before transplant
causes your skin to be more sensitive, even if you are dark skinned.
Excessive direct exposure to the sun and/or ultraviolet rays should be
avoided. If you must be in the sun for any length of time, wear a hat and
sunscreen with a protection factor of at least 30 SPF.
LONG TERM
FOLLOW-UP
Returning to Work
Infections are easily transmitted throughout certain work places. We
recommend that our patients do not return to work for approximately six
(6) months. This might vary depending on the type of work you do and the
amount of exposure you have to other people. Once again, discuss your
return to work with your physician.
Immunizations
Due to having a myeloablative stem cell transplant, your bone was “wiped
out” with the high dose chemotherapy and/or radiation so you no longer
have the protection of your childhood immunizations. One (1) year post
transplant all of your childhood immunizations will need to be repeated.
Dental Work
During the first year after transplant you should have your blood counts
checked prior to going for any dental work. You may also need to have
antibiotics prior to certain types of dental work, you can check with your
BMT physician.
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Patient and Caregiver Resources
Emotional Support:
Caring Bridge
www.caringbridge.org
651-452-7940
National Bone Marrow Transplant Link
www.nbmtlink.org
248-358-1886
Financial Assistance:
American Cancer Society
www.cancer.org
800-ACS-2345
Bone Marrow Foundation
www.bonemarrow.org
800-365-1336
Cancer Care
www.cancercare.org
800-813-4673
Florida Hospital Patient Financial Services
www.floridahospital.com
407-303-2800
Leukemia & Lymphoma Society (co-pay)
www.lls.org
800-785-0733
National Foundation for Transplant
www.transplants.org
800-489-3863
National Transplant Assistance Fund
www.transplantfund.org
800-624-8399
LONG TERM
FOLLOW-UP
National Marrow Donor Program
www.marrow.org
800-627-7692
Patient Access Network Foundation
www.panfoundation.org
866-316-7263
Patient Advocate Foundation (co-pay)
www.copays.org
866-512-3861
Pharmacy Assistance:
Needymeds
www.needymeds.com
Other Resources:
Blood & Marrow Transplant Newsletter
www.BMTinfo.org
888-597-7674
Florida Hospital Transplant Center
www.fhtransplant.com
407-303-2070
Lance Armstrong Foundation
www.livestrong.org
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Patient and Caregiver Resources (continued)
Other Resources (continued):
Fertile Hope (fertility preservation)
www.fertilehope.org
National Cancer Institute
http://cancernet.nci.nih.gov
800-422-6237
Social Security Administration
www.ssa.gov
800-772-1213
The National Coalition Cancer Survivors
www.canceradvocacy.org
800-622-7937
Cancer and Careers (legal, coaching)
www.cancerandcareers.org
Lodging Resources
(Prices are subject to change please call hotel for current rates)
LONG TERM
FOLLOW-UP
Extended Stay America- Orlando- Universal Studios
5620 Major Boulevard
Orlando, FL 32819
407-351-1788
Studio Suite,1 queen bed. Nightly from $33.99
[email protected]
Extended Stay Deluxe- Orlando- Maitland
1776 Pembrook Drive
Orlando, FL 32810
407-667-0474
Studio Suite, 1 queen bed. Nightly from $52.99
Signature Studio, 2 double beds. Nightly from $51.99
[email protected]
Extedned Stay Deluxe- Orlando-Maitland-Summit
1951 Summit Tower Boulevard
Orlando, FL 32810
407-659-0066
Studio Suite,1 King bed. Nightly from $47.99
One bedroom suite, 2 double beds. Nightly from $57.99
[email protected]
Crossland Economy Suites- Orlando-University of Central Florida
12350 East Colonial Drive
Orlando, FL 32826
407-282-7112
Studio Suite, 1 double bed. Nightly from $25.99
[email protected]
32
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Patient and Caregiver Resources (continued)
Lodging Resources
Circle of Friends
Florida Hospital Campus
613 Winyah Drive
Orlando, FL 32804
407-303-7527
Each room has 2 twin beds and a private bathroom.
Community kitchen (shared by other guests staying in house, maximum
number of guest is 10).
$40.00 per night-per room. Maximum 2 persons per room.
Reservations are not accepted. Please call Jeannie for availability.
Comfort Suites
2416 North Orange Avenue
Orlando, FL 32804
407-228-4007
$89.00 per night
LONG TERM
FOLLOW-UP
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This is a brief guideline to help you decide when to call the doctor for
symptoms experienced after Bone Marrow Transplant, Peripheral Stem
Cell Infusion or High Dose Chemotherapy. If there is ever any question in
your mind whether or not to call, PLEASE do not hesitate to call. You have
accomplished a great deal through the transplant process and we would
like for your recovery period to be as smooth as possible.
Fever
What to expect:
• Possible chilling, generally “feeling bad”, possible joint pain, muscle aching.
What to do:
• Take your temperature, morning/afternoon, and any time you feel hot/warm.
When to call:
• Temperature above 100.5 ˚.
Report any of the above symptoms when you call.
Nausea, Vomiting and Diarrhea
What to expect:
• Possible nausea and vomiting associated with food intake.
• Possible abdominal cramping.
Common
Questions
and Answers
• Possible burning sensation in stomach.
What to do:
• Take nausea or diarrhea medication as directed if you were given a takehome prescription.
• Look for blood in vomit and stool.
• Note approximate amount, frequency, and color of vomit and stool.
When to call:
• Call immediately for blood in vomit or stool.
• Nausea/vomiting/diarrhea; preventing food intake for more than 24
hours.
• Nausea medicine doesn’t work.
• Diarrhea medicine doesn’t work.
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Skin Care
What to expect:
• Possible rashes.
• Extra-sensitive skin in the sun.
• Dry skin.
What to do:
Take extra care in the sun.
Wear:
• Long sleeves
• Long pants
• Sunblock with SPF of 30 or more
• Wide brim hat
• Sunglasses
Look for rashes
Apply lotion to dry skin
When to call: If any rashes develop
Catheter Care
What to expect:
• You should expect NO PROBLEMS.
• Blood to be drawn on follow-up visits.
What to do:
• Observe catheter site for redness, swelling,
tenderness and discharge/draining.
Common
Questions
and Answers
• Flush catheter daily as instructed.
• Change catheter dressing as instructed.
When to call:
• Catheter site red, swollen, tender or
any discharge/drainage.
• Problems with flushing.
• Catheter leaking around
insertion site.
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Mouth Care
What to expect:
• Possible fever blister-like sores
• Possible white patches
• Possible gum soreness or bleeding
What to do:
• Observe mouth for sores, white patches, bleeding.
• Brush teeth with soft bristle brush.
• Avoid spicy foods if mouth is sore.
When to call:
• Fever blisters, white patches in mouth.
• Gums bleeding.
• Mouth soreness that prevents oral intake.
In General
• Wear a mask in crowds until otherwise instructed:
• Up to 30 days after transplant for auto transplants, peripheral blood stem
cell infusions and high-dose chemotherapy.
• Up to 90 days after transplant for allo transplants.
Common
Questions
and Answers
• Avoid people with infections.
• Avoid animals, pets and farm animals.
Remember:
These are only guidelines. If observation and common sense signal you
to call, DON’T HESITATE, Call the Clinic!
36
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Antibiotic
A drug used to fight bacterial infections.
Apheresis
A procedure by which your blood is withdrawn and circulated through a
machine that removes the stem cells and then returns remaining cells back
into your bloodstream.
Autologous
When a patient receives tissue/marrow from themselves. This can be from
a bone marrow harvest or apheresis when in reference to BMT.
Bone Marrow
Spongy tissue inside the bones where the blood cells are produced.
Bone Marrow Harvest
An operation to collect the bone marrow for transplantation.
Catheter (Central Line or Line)
A small flexible plastic tube inserted into the chest through which drugs
and fluids can be given (also known as a Hickman or Broviac (Pediatric)
Catheter). This is also used for stem cell collection.
Clinical Trial
A carefully controlled and monitored experiment to test a new drug or
therapy, involving human patients.
Conditioning Regimen
High doses of chemotherapy and/or radiation therapy to kill cancer cells or
destroy bone marrow in preparation for a transplant.
Cryopreservation
GLOSSARY OF
MEDICAL TERMS
The process by which cells or whole tissue are preserved by cooling to
subzero temperature.
DMSO (Dimethyl Sulfoxide)
A preservative used on stem cells or bone marrow to protect the cells
during freezing. When infused into your blood stream this may cause you
to smell or taste a garlic-like odor.
Engraftment
Process in which the stem cells migrated to the bone marrow space and
begin to divide and produce new blood cells.
Graft
Tissue taken from an individual and implanted or infused into another
individual; an autograft is tissue from the same individual moved from one
part of the body to another or in BMT, infusion of patients own marrow.
Growth Factor (Colony Stimulating Factor)
(i.e. GCSF, Plerixafor) Natural substances that stimulate cell division and
growth.
Heparin A drug used to “thin” the blood and keep it from clotting; also used in
central line care.
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Immunosuppression
Suppression of the immune response thus making a patient more prone to
infection.
Informed Consent
A form that a patient is required to sign before undergoing any surgical or
medical treatment. This is for the patient to gain an understanding of all
that is involved with the treatment.
Infusion
The introduction of a liquid into the body by a vein.
Mobilization
Using chemotherapy and/or a colony stimulating factor to move stem
cells out of the bone marrow and into the blood stream to be collected by
apheresis.
MUGA- A
Test that determines the heart strength.
Neutropenia
A condition that occurs when the infection fighting white blood cells are low.
Neutrophils
The white blood cells that fight infection. The absolute neutrophil count
or ANC is a term used in reference to the percentage of neutrophils in
comparison to all of the white.
GLOSSARY OF
MEDICAL TERMS
Peripheral Blood Stem Cell (PBSC)
A stem cell that has been released into the blood stream and used for stem
cell support.
PFT (Pulmonary Function Test)
Test used to determine the amount of oxygen that is being transported
across the lungs.
Platelets
The blood cells that help the body to form clots to prevent profuse bleeding.
Protocol
A plan of care or treatment.
Red Blood Cells
The blood cells that carry oxygen to all the tissues throughout the body.
Reinfusion
The return of stem cells into the blood stream.
Stem Cell
The immature cells or “seed” for all other blood cells to develop.
Subcutaneous Injection (Sub Q)
An injection into the fatty layer under the skin.
Thrombocytopenia
A condition in which there are not enough platelets in the blood.
38
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White Blood Cells
The infection fighting blood cells.
9/23/13 5:30 PM
• *1996. Amgen. Stem Cell Support, Making Delivery of your High-Dose
Chemotherapy Possible: A guide for patients and caregivers.
• *1995. Leukemia Society of America. Bone Marrow Transplantation
and Peripheral Blood Stem Cell Transplantation.
• *1994. Bard. How to Care for your Hickman, Broviac or Leonard
Catheter.
• 1993. Leukemia Society of America. Bone Marrow Transplantation:
Questions and Answers.
• 1992. Leukemia Society of America. Bone Marrow Transplantation.
• 1993. Immunex. Understanding your Bone Marrow Transplant. Book
and Video
• 1994. Cerenex. Bone Marrow Transplantation. A Guide for Patients and
Families.
* Reading for Autologous and Peripheral Blood Stem Cell patients.
REFERENCES AND
ADDITIONAL
RECOMMENDED
READINGS
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2501 North Orange Avenue, Suite 581 · Orlando, Florida 32804
P: 407.303.2070 · F: 407.303.2071
FloridaCellularTherapy.com
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