Hello Wilbur,
Please accept my condolences for your family. This must be a
fearful and stressful time for all of you. I have worked with hundreds
of BMT patients and find them very brave, courageous and accepting of
their therapy.
MDS, or myelodysplastic syndrome, occurs when the blast cells in the
bone marrow (blasts are formed in the marrow) do not mature and leave
the marrow. Instead they keep producing, accumulating in the bone
marrow, and the patient becomes deficient in all types of blood cells,
leading to decreased immunity and a prevalence for infections.
?MDS used to be called preleukemia because the blast cells can
resemble certain leukemic cells or eventually become leukemic. Only
about one-third of myelodysplastic cases, however, actually lead to
leukemia. For this reason, most doctors today seldom use preleukemia
as a name for the condition. The types of MDS most likely to turn into
leukemia are RAEB and RAEB-t.?
?There is no clear cause for the majority of MDS cases, which are
called primary myelodysplastic syndromes. In some cases, however, MDS
results from earlier cancer treatments, such as radiation and/or
chemotherapy. This type of MDS is called secondary or
treatment-related myelodysplastic syndrome. It is often seen in
patients under the age of 30. The time span between cancer therapy and
the development of MDS is usually three to six years, with a range of
1.5 to 13 years.
Other possible causative agents for MDS include exposure to radiation,
cigarette smoke, and such toxic chemicals as benzene. Children with
preexisting chromosomal abnormalities such as those found in Down
syndrome may also have a higher risk of developing MDS. MDS does not
appear to run in families, nor can it be spread to other individuals.?
?A hematologist or a specialist in diseases (a pathologist) will
carefully examine the bone marrow samples through a microscope.
Microscope examination allows the doctor to determine the number and
type of blasts within the marrow in order to identify the MDS subtype.
Cells from the bone marrow biopsy may also be used for cytogenetic
testing, which analyzes the cells' chromosomes. Certain chromosomal
abnormalities in bone marrow cells are common in MDS. In fact, 40-70%
of MDS patients have changes within their bone marrow chromosomes as a
result of the disease. The pattern of these changes can be used to
predict how a patient will respond to treatment. Thus, the full set of
information provided by a bone marrow biopsy ultimately allows the
doctor to design the most effective treatment plan.?
http://www.chclibrary.org/micromed/00057470.html
I believe the BMT (bone marrow transplant) process is fairly uniform
all over the US. Should your brother have an unusual antigen, or a
rare blood group, then a large medical center may have specialists who
are more in the know. Today, BMTs are close to being a routine
procedure any more, but I would look for a Medical Center and
hematologist who is very experienced in BMT procedures. I would not
expect you to receive lesser treatment at a close to home medical
center, especially the ones recommended below, belonging to the NBMT
network (National Marrow Donor Program Transplant Centers network).
Having your brother close to home will also be easier on him and your
family, facilitating frequent visits from family and friends.
Follow-up visits and evaluations will be easier on all involved, if
the medical center is close to home. While M.D. Anderson and Sloan
Kettering have excellent facilities, I would not hesitate to trust in
the centers that participate in the NBMT network, as discussed below.
All of the medical centers in my answer belong to the NBMT network.
The National Bone Marrow Transplant Link maintains an informative
website, an excellent source of information. If you have not seen this
site, I recommend that you do so. From that site:
How do I choose a transplant center?
====================================
There are distinct advantages to having the transplant at a large
experienced center with an excellent track record. If you have such a
center close to home, the choice of where to do the transplant will be
easy. If, however, this is not the case and there is no center near
your home or it has a poor track record or has performed fewer than 10
transplants of the kind you need, the choice may be more difficult.
http://www.nbmtlink.org/faq.asp
How to Select a Bone Marrow Transplant Program
===============================================
?Latest treatments
Medical science changes daily, and it's important to have access to
the latest advances. An academic medical center stays up-to-date on
the most promising developments, and offers patients the option to
participate in research programs.
Patient-friendly
Bone marrow transplantation is a process, not a single event. Finding
a center where you're comfortable is very important. You'll want
telephone access at any time of day, a single point of contact for all
your questions, and a friendly, caring staff. It can make a world of
difference to your outcome.
Family-friendly
For most patients, family support is very important during the bone
marrow transplantation process. Make sure that your family can
participate throughout, and that they have access to support services.
It's also important to select a program that offers flexible visiting
hours so your family can visit often.
Comfortable facility
Most bone marrow transplant patients spend a few weeks in the
hospital, so it makes sense to choose a comfortable facility. It's
important to have a designated bone marrow transplant unit with
private patient rooms to ensure a safe recovery at a time when you are
most susceptible to infection.
Reputation
You'll feel better if you know that the hospital is highly regarded.
Look for a hospital that has a strong reputation in all areas of
patient care, especially cancer services.?
http://www.georgetownuniversityhospital.org/body.cfm?id=678
?The actual transplant is a fairly simple procedure. The stem cells
are infused through a central venous catheter, similar to a blood
transfusion. The new stem cells gradually move to the bone marrow
space and start to develop new marrow. This process is called
"engraftment" or marrow recovery, and usually begins to occur between
ten to 21 days after the transplantation.?
http://health.ucsd.edu/transplant/bmt/procedure.asp
From the NBMT Link site, the following hospitals in Colorado are
National Marrow Donor Program Transplant Centers:
Presbyterian/St. Lukes Medical Center
=====================================
Presbyterian/St. Lukes Medical Center
Rocky Mountain Blood and Marrow
Transplant Program
1719 East 19th Avenue
Denver, CO 80218
(303) 839-6953
(877) 268-9300
?The Rocky Mountain Blood and Marrow Transplant Program is a
partnership between the Advanced Cancer Center at Presbyterian/St.
Luke's Medical Center and Rocky Mountain Cancer Centers.
HealthONE-Presbyterian/St. Luke's Medical Center is a 680-bed tertiary
medical facility and teaching center offering comprehensive
diagnostic, therapeutic, and rehabilitative services. The Blood and
Marrow Transplant Unit at Presbyterian/St. Luke's Medical Center is
equipped with 10 private rooms, each furnished with critical care
monitoring capabilities, and a central HEPA filtered air handling
system.
Rocky Mountain Cancer Centers-Midtown is an established physician
group practice experienced and specialized in hematology/oncology and
hematopoetic progenitor cell transplantation. The Blood and Marrow
Transplant Outpatient Clinic is presently a dedicated seven
private-bed and five-chair treatment unit, with plans for expansion in
2004.?
http://rockymountainbmt.com
Hospitals that belong to the National Marrow Donor Program have access
to and maintain network standards:
· ?Search results that include all potentially matched adult donors
and cord blood units, so a physician can select the best cell source
for each patient
· Cutting edge systems, including the Search, Tracking and Registry
(STARŪ) System -- a one-of-a-kind electronic infrastructure to:
o Collect donor and cord blood unit information needed for donor searches
o Manage and facilitate all donor searches
o Track patient and donor status after transplant
· Innovative logistics to efficiently manage the complex process of
donor search and cell collection and transportation
· Quality search processes accredited by the World Marrow Donor Association
http://www.marrow.org/cgi-bin/NETWORK/tc_idx.pl?ctr_id=416&state=Colorado&st_abbr=CO&p_src=map
You can read all the standards here:
http://www.marrow.org/NMDP/std_complete_04.pdf
?The Rocky Mountain Blood and Marrow Transplant Program is committed
to providing you and your families with compassionate, ethical,
high-quality, and cost-effective transplant treatment and care.
The program is longtime supporters of, and educational partners with
the Leukemia and Lymphoma Society and the American Cancer Society.
The program provides this care through a dedicated interdisciplinary
team working within a research framework in order to expand the
knowledge and practice of hematopoetic transplantation through
scientific investigation.?
http://rockymountainbmt.com/CustomPage.asp?guidCustomContentID={7D2F9BAA-39FB-4C0A-A070-75E9EEDC7863}
The Rocky Mountain BMT transplant Team
http://rockymountainbmt.com/CustomPage.asp?guidCustomContentID={C260EF66-21F0-4940-A9E5-703AAAF15D0A}
Further Contact Information
http://rockymountainbmt.com/CustomPage.asp?guidCustomContentID={FB19C3C5-8900-4D4E-AC3D-C7B172C3D3E2}
I have included the University of Colorado Children?s hospital here
simply because it was the only other NMDP network hospital in
Colorado. Unfortunately it serves only pediatric patients.
University of Colorado The Children's Hospital
Hematology/Oncology/BMT
1056 East 19th Avenue, B-115
Denver, CO 80218
(303) 861-6892
If you want to explore other medical centers, I can think of two you
may want to investigate further.
Duke University Medical Center, Durham, NC
==========================================
DUMC belongs to the NBMT network, and because I worked in Special
Hematology/Heme-Onc. clinic at Duke, I can vouch for their cutting
edge research and skill.
Duke University Medical Center
Adult Stem Cell Transplant Program
Division of Stem Cell Therapy
2400 Pratt Street, Box 3961, Rm 1105 N.P.
Durham, NC 27705
(919) 668-1005
Here are the BMT staff:
http://bmt.mc.duke.edu/physician.htm
?The Adult Bone Marrow and Stem Cell Transplant (ABMT) Team includes
health care professionals who are specially trained in bone marrow and
stem cell transplantation and dedicated to helping you through all
phases of the transplant process. They will determine whether you are
a good candidate for a transplant and then provide you with the
information and support necessary to decide the right treatment for
you. You will meet each member of the team during different periods of
your care.
Once you are enrolled on a transplant protocol, the ABMT team will
provide you with the treatment and care required throughout the
transplant process. However, you are the most important member of the
transplant team and your participation is vital. Throughout your
treatment we will encourage you to ask questions and take an active
role in your treatment and recovery.?
http://bmt.mc.duke.edu/team.htm
?Patients may be referred to our program by their physician in
consultation with one of the Duke ABMT physicians. If the ABMT
physician and the referring physician decide the patient should come
to Duke for an evaluation, the patient will be instructed by her or
his physician to contact our Intake Coordinator.
The Intake Coordinator provides patients with all the information he
or she needs prior to coming to Duke for the first time and works with
the referring physician to obtain tests and other records. Two
dedicated financial counselors assist patients with insurance issues
and necessary authorizations.
Duke Bone Marrow & Stem Cell Transplant Program
DUMC Box 3961
Durham, NC 27710
TEL: 919.668.1000
FAX: 919.668.1091
http://bmt.mc.duke.edu/contact.htm
Cleveland Clinic
================
Cleveland Clinic Foundation # 507
9500 Euclid Avenue
Room R32
Cleveland, OH 44195-0001
Toll-free phone: (800) 223-2273 X44652
?The Bone Marrow Transplant Program is accredited by the Foundation
for the Accreditation of Cellular Therapy (FACT), American Association
of Blood Banking, the Ohio Bone Marrow Consortium and Southwest
Oncology Group (SWOG). The Program is specially trained in meeting the
needs of bone marrow transplant patients. The team is committed to
providing comprehensive care in a compassionate setting.?
http://www.marrow.org/cgi-bin/NETWORK/tc_idx.pl?ctr_id=507&state=Ohio&st_abbr=OH&p_src=map
?The Cleveland Clinic Foundation performed its first bone marrow
transplant in 1977. Since the program began, the Cleveland Clinic has
performed over 1,700 bone marrow transplants.
The Bone Marrow Transplant (BMT) Program is an essential component of
a broad medical and surgical strategy to manage patients with
hematologic and oncologic diseases. The BMT program offers
state-of-the-art transplantation in both autologous and allogeneic
bone marrow transplants. We are one of the world?s leading authorities
on peripheral stem cell mobilization and transplantation of autologous
peripheral stem cells. We were one of the founding members of the
National Marrow Donor Program in the use of unrelated donors for
allogenic BMTs.
For information, contact:
Bridget Rini, Department Coordinator
Phone: 216-445-5600 or 800-223-2273 x55600
http://www.clevelandclinic.org/transplant/services/boneMarrow.htm
?Cleveland Clinic Heart Center Ranked No. 1 in Nation for 11th
Consecutive Year; Taussig Cancer Center Leaps in U.S. Rankings,
Leading Ohio Cancer Centers
The Cleveland Clinic is once again ranked No. 4 in the United States
according U.S. News & World Report. Overall, the magazine ranked 16
specialties at the Clinic among the nation?s best and deemed 11 of
those specialties to be among the Top 10 in the United States.
In addition, the Cleveland Clinic Taussig Cancer Center is Ohio?s
highest-ranked cancer center, according to the just-released 2005 U.S.
News & World Report ?America?s Best Hospitals? survey. The Taussig
Cancer Center leapt from No. 30 to No. 14 in the magazine?s annual
rankings, moving ahead of all other cancer centers in Ohio.
U.S. News & World Report ranked The Cleveland Clinic Heart Center as
the nation?s No. 1 cardiac care center for the 11th year in a row.
?Results of the latest U.S. News & World Report survey underscore the
impact that The Cleveland Clinic?s commitment to pioneering patient
care and research has upon the lives of patients and families every
day,? said Delos M. Cosgrove, M.D., CEO and President of The Cleveland
Clinic. ?I am very appreciative of the efforts of the Clinic?s medical
staff and employees to see that patients receive the best care
possible.?
Derek Raghavan, M.D., Ph.D., Chairman of The Cleveland Clinic Taussig
Cancer Center, said he also is proud of the Taussig Cancer Center?s
achievements and has even greater goals in mind.?
http://www.clevelandclinic.org/
Since you mentioned M.D. Anderson (It IS a great medical center):
M.D. Anderson Cancer Center , Houston, Texas
=============================================
M.D. Anderson Cancer Center
University of Texas
1515 Holcombe Boulevard
Box 3, R8.1621
Houston, TX 77030
(713) 792-2687
?M.D. Anderson is one of the world's largest transplant centers. We
transplant many different diseases and have innovative research and
technology available. We have a state-of-the-art cell processing
laboratory that meets all GMP standards. Dr. Champlin is world
reknowned in the transplant field. Dr. Gajewski is a leader in
unrelated transplants. All faculty have transplant-specific
credentials.?
http://www.marrow.org/cgi-bin/NETWORK/tc_idx.pl?ctr_id=535&state=Texas&st_abbr=TX&p_src=map
· ?M. D. Anderson's Blood & Marrow Transplantation Center is the
largest transplantation center in the country.
· M. D. Anderson has the largest peripheral blood stem cell collection
facility in the country.
http://www.mdanderson.org/
?Welcome to the Blood and Marrow Transplantation Program at M. D.
Anderson Cancer Center. We are one of the largest centers in the world
for blood and marrow transplantation. The Blood and Marrow Transplant
team performs over 600 blood and marrow transplants for adults and
children each year, more than any other center in the nation. The
mission is to utilize transplantation-based therapies to eliminate
cancer and to provide personalized "state-of-the-art" patient care.
The Blood and Marrow Program also has a strong commitment to clinical
and basic science research and to advancing the field of bone marrow
transplantation. Please browse this site to learn more about The Blood
and Marrow Department at M. D. Anderson Cancer Center, the services we
provide and how we can help you.?
http://www.mdanderson.org/departments/bmt/Index.cfm
Further contact information:
http://www.mdanderson.org/contact_us/
Here are the top cancer hospitals in the US. Notice that Sloan
Kettering is at the top of the list!
1) Sloan Kettering
2) M.D. Anderson
4) Dana-Farber
5) Mayo Clinic
6) Duke University
14) Cleveland Clinic
http://www.usnews.com/usnews/health/best-hospitals/rankings/specihqcanc.htm
?When you have a bone marrow or cord blood transplant (also called a
BMT), the day you receive your donated cells is often called "Day
Zero." Patients have different feelings about this day. For some
patients, it is a scary time. For others, it is a time of
celebration.?
?Day Zero -- transplant day -- usually comes one or two days after you
complete the preparative regimen. You may be tired or have other early
side effects from your preparative regimen. If you receive cells
donated by an adult donor, your donor completes his or her donation
either on Day Zero or the day before. If you receive cells from an
umbilical cord blood unit, the unit will be shipped to your transplant
center sometime before your transplant. To read more about how your
new cells get to you, see Getting Your Donated Cells to the Transplant
Center.
The donated cells arrive in blood bags, just like the ones used to
collect blood from blood donors. The color and amount of fluid depend
on whether the cells were collected from marrow, peripheral blood or
an umbilical cord and whether the red blood cells were filtered out.
The cells in the bags are infused (put into your body) through an
intravenous (IV) line, much like a blood transfusion. Most of the time
the cells are infused through a central line. A central line is a tube
that has been surgically inserted into a vein in your chest. (For more
information about central lines, see Getting a Central Line and
Entering the Hospital.)
The infusion process takes about one hour, sometimes longer, depending
on the volume of cells. The infusion usually does not hurt. A nurse
will watch your blood pressure and pulse and watch for any reactions
while you are getting your new cells. Some people have mild side
effects like those of blood transfusions. These side effects do not
last long. You will be awake to receive the donated cells, although
you may be mildly sedated.
The donated cells "know" where they belong in the body. They move
through your bloodstream to settle in your bone marrow. This is where
the donated cells will begin to grow and produce new red blood cells,
white blood cells and platelets. This is called engraftment.?
http://www.marrow.org/PATIENT/new_cells.html
?The decision to undergo a bone marrow or cord blood transplant (also
called a BMT) can be stressful for you and your family. The treatment
is hard on your body and can be hard emotionally, too. A transplant
doctor will examine you to be sure that a transplant is a good
treatment option for you and to better plan your treatment during the
transplant process.?
?Your transplant doctor will review your health history, do a physical
exam and order tests to:
· Check your body's overall health, including organs such as heart,
lungs, liver and kidneys
· Check for problems, such as an infection, that should be treated
before transplant
· Evaluate the status of your disease -- for example, is it active or in remission?
· Find out how your disease responded to previous treatments
· Look for any other health problems that might affect your transplant
http://www.marrow.org/PATIENT/evaluating_health.html
You are probably already well versed in the subject of myelodysplasia
already, but I found this interesting:
?How can I take care of myself with MDS?
· Avoid contact with chemicals such as gasoline, kerosene, paint,
pesticides, and cleaning agents.
· Talk to your health care provider about exercise, such as walking or
riding a stationary bicycle.
· If you have low red blood cell counts, avoid exercising too much,
going to high altitudes, or any activity that causes chest pain,
shortness of breath, or a fast heart rate.
· If you have low white blood cell counts, keep track of your
temperature, and get medical help right away if you have a fever
higher than 100.4°F, or 38°C.
· Avoid cuts, burns, and other injuries.
· Take all medicines as prescribed by your health care provider.
· Eat a healthy diet. This helps support your body and keeps up your strength.
· Join a support group in your community.
· Call your health care provider when you have any questions about
your condition or treatment.
· If you get a severe headache, or severe pain anywhere, contact your
health care provider right away.
http://www.med.umich.edu/1libr/aha/aha_myelodys_crs.htm
?MDS is due to genetic defects in the multi-potent blood stem cell of
the bone marrow. Most of these are not yet described. Differentiation
of the abnormal cells is impaired. Clonal expansion of the abnormal
cells lead to production of abnormal cells and decreased production of
normal bone marrow products.
Death from bleeding (due to lack of platelets) or infection (due to
lack of white blood cells) is the outcome for about 60% of MDS
patients. In about 25-35% of patients there is a further genetic
mutation in one of the abnormal blood stem cells which eventually
results in acute leukemia. The progression of MDS to leukemia is a
good example of the multi-step theory of carcinogenesis in which a
series of mutations occur in an initially normal cell and transform it
into a cancer cell.?
http://en.wikipedia.org/wiki/Myelodysplasia
?Supportive Care
Since many MDS patients are over age 60 and may have other health
problems, supportive care is often selected instead of other, more
aggressive treatments, which are harder on the patient. The goal of
supportive care is not to cure MDS, but to control the symptoms by
giving transfusions of red blood cells and/or platelets and giving
antibiotics and other medications. Patients with the RA type of MDS
can sometimes be treated successfully with transfusions for many
years.
Growth Factors
MDS patients are sometimes treated with growth factors that can help
the body produce more white blood cells. Common immunotherapy drugs
include G-CSF, GM-CSF and erythropoietin (EPO). Growth factors are
helpful to some patients, but not all, especially not patients with
more advanced MDS. Clinical trials are being done to learn more about
the types and combinations of growth factors that might help MDS
patients.
Chemotherapy
Patients whose disease is more severe or getting worse more quickly
may be treated with chemotherapy. Patients with the RAEB, RAEB-t or
CMML type of MDS are more likely to receive chemotherapy than patients
with the other types.?
http://www.marrow.org/PATIENT/myelodysplastic_syndromes.html#treatment
There you go! You obviously have your brother?s best interests at
heart, and I?m glad you are getting a second opinion at Dana-Farber. I
would feel just as comfortable at the Rocky Mountain Bone Marrow
center/Presbyterian/St. Lukes Medical Center as at M.D. Anderson,
barring rare blood roups/antigens/antibodies. Another thing? doctors
DO choose the hospitals they prefer, and to which they have admitting
privileges. This is not a bad thing! This way doctors are familiar
with the staff, protocol, formulary, and facilities, making their work
more efficient and easier on them (and the patient). You always have a
right to select a different doctor or hospital.
I wish you the best with your potential bone marrow donation and that
your brother makes a full recovery. The hospital staff will instruct
you and your family on strict hand washing, and protective wear
(gowns, masks, shoe covers, etc.) around your brother. Make sure
everyone that cares for and visits him follows the protocol to the
letter, as your brother will be very susceptible to infection after
the BMT.
If any part of my answer is unclear, please request an Answer
Clarification, before rating. I will be glad to assist you further, if
possible.
Sincerely, Crabcakes
Search Terms
=============
NBMT network
US News and WOrld Report + Best Hospitals
BMT + hospitals
MSD
Bone marrow + myeloblasts + MSD |
