These guidelines where posted by Cynthia L Ikner at NHL-Info
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How many transplants has your center done?
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Do they have data on the Allogeneic transplants?
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How is the nursing staff? The bone marrow transplant coordinator should be able to find
all this out.
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How often will an attending see you? Should be daily.
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Will nurse practitioners or fellows give the majority of management? Fellows are docs in
internal medicine who are doing a three to four year fellowship in Hematology Oncology. My
personal preference is a fellow, although I have spoken with others who are pleased with
their Nurse practitioners.
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Will your attending be on service when you have your transplant?
If not, how is your case signed out to the attending on service (service = the Bone Marrow
Transplant Unit). "Signed out" means 'how are your introduced to the attending
on service?'
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Do I need chemotherapy before the transplant? You have already had 2 cycles of CHOP to
determine "sensitivity." Some oncologists continue to do this and others believe
it is passé in Allogeneic transplants. Remember, the graft vs. lymphoma is the chemotherapy
substitute for irradiation with an allo transplant.
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Is total body radiation used in conditioning (that is the chemotherapy/radiation you get
to kill your bone marrow and the disease right before transplant)? Radiation in the
regimen is known to improve survival.
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How is the radiation done? Are lung blocks used? The radiation is best given in small
doses, usually twice to three times daily. The total is about 1000 centigray. You will
meet with the radiation oncologist prior to implant.
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Is some type of T-cell depletion done? T-cell depletion of the donor's marrow or stem
cells is known to decrease graft vs host disease. Keep in mind the good news is that there
is a graft vs lymphoma effect. Your brother's bone marrow or stem cells will recognize the
returning lymphoma as "foreign" and attack it to death. Are the T-cells returned
to me? At what point? Usually if the lymphoma returns, the T-cells that were originally
depleted are saved for re-infusion at recurrence. Therefore instead of chemotherapy, you
get T-cells to fight the lymphoma.
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What type of immunosuppressives are used, when, and what are the side effects? Often
when graft vs. host appears there needs to be a regimen to suppress it; you want this
suppression to be limited.
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Can Peripheral Blood Stem Cell Transplantation be done? The recent data from Fred
Hutchinson showed a survival benefit. It was a single, institution small study with
several different diagnoses. To find out how the low-grade lymphomas did, you would
probably have to call the authors (below). Still that would be "subset analysis"
which is often not reliable from a statistical standpoint.
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Where's my copy of the Bone Marrow Information Guide for patients?
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Can I take my PC/laptop into my room (if you want)?
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What can I bring to add that "homey" touch and still remain within isolation
guidelines?
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If the donor is out-of-town, how is reimbursement for housing and food done? It is good
to tie this down as each insurance co/HMO is different.
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If you have an HMO get a case manager if you don't already have one. Then your
significant can send bills to them and they can handle it. Get the address and these
details tied down prior to transplant. You and your family will have your hands full with
healing tasks.
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Keep notebook (spiral steno) with pens handy. Use a new page for every laboratory visit,
doctor visit or day in the hospital. At the top of each page write day, date, time, name
of laboratory/doctor/hospital, location. What was done AND the name of the person who did
it AND ask why. Keeping this record will keep your mind sharp, a real task during this
experience, I am told.
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When the results are known, ask your nurse about them. Depending on your knowledge and
desire to "know" you will be able to jot the notes or paste the lab values on
the appropriate page or back of page. This is certainly optional unless you have medical
personnel in the family who "want to know." This list is by no means
comprehensive.
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Remember: the only dumb question is one you don't ask. All these questions should be
answered quickly and thoroughly; if not, seek another center ASAP and don't feel guilty.
(I recently switched from a major cancer center for that very reason. I have the radiation
scheme I wanted, the transplant type desired, and a very helpful coordinator who gets back
to me immediately.)
Sources: I will give you the BMT/Non-Hodgkins sources and T-cell depletion
sources in a subsequent post.
Brochstein et al. Allogeneic bone marrow transplantation after hyperfractionated
total-body irradiation and cyclophosphamide in children with acute leukemia.
NEJM;1987;12:1618.
Thomas et al. One hundred patients with acute leukemia treated by chemotherapy, total
body irradiation, and allogeneic marrow transplantation. Blood; 1977:49:511-533.
Bensinger et al. Stem Cell Transplants Up Survival Odds in Some Cancers. Presented at
ASH, New Orleans, December 8, l999 (previously posted by Paul Klein at this site)
Trek with Cancer by Magee Cook. MACKEN Publishing; PO Box 536;Olney, MD 20830 This was
written by the wife of a bone marrow transplant survivor. Send a donation to the above
address to obtain a copy of Trek with Cancer. It is excellent.
Poster at ASH: When is a patient "cured" following ABMT/PBSCT? an analysis in
NHL from the EBMT suggests that Patients with Low Grade Lymphoma may not be
"cured" with ABMT/PBSCT. Note: this touts allo as POSSIBLE "cure" vs
auto which is not a "cure." Also shows benefit for Total Body Irradiation in
high grade NHL as part of the conditioning regimen.
Soiffer et al. Prevention of graft-versus-host disease by selective depletion of CD6 T
lymphocytes from donor bone marrow. J. Clin. Onc 1992;10:1191-1200. Marmont et al. Blood
1991;78:2120-2130
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