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Transplants > Tips and Questions to Ask about Stem Cell Transplants 

Last update: 10/25/2012

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Patient Tips and Experiences | Questions to Ask the Transplant Team

Also see Patient Stories

Resources:

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Going Home After Your Autologous Stem Cell Transplant NYU
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Planning for your Transplant  marrow.org
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Life after transplant PAL

Patient Tips and Experiences

Posted to WebMagic

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JACK:

I had an Auto SCT on Feb 3 of this year in Cleveland.

It wasn't easy, but it is very doable.

I don't have too much advice as to preparing for it,
but while admitted I would say to stay as active
as possible, walk up and down the hall as much
as you can.

Drink as much as you can, don't worry about eating much.
That will come later.

I lost about 45 Lbs. I came home on day +12, and now 4 months later.
I'm doing good with no restrictions.

I still get tired easy, and I'm not eating as much as I did before, but I feel good.

The SCT is not easy, but I think she should do fine.
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JEN:

My partner was diagnosed last summer with aggressive Stave IVB DLBCL. Six sessions of R-CHOP, plus IV and intrathecal Methotrexate resulted in "no evidence of disease" at the end of January.

At her 3 month checkup, she mentioned some numbness in her right arm. The docs suspected a pinched nerve, and ordered a series of EMG tests (nerve function) and MRIs of her cervical spine, and then arm. Nothing showed up. They then did an MRI of the shoulder and saw "something". Followed up with a PET scan which showed one single lymph node lighting up in her brachial plexus (all surrounded by nerves). Blood work still looked good - no evidence of further progression.

Next was a very nasty biopy -- took three hours because the nerves completely encase the lymph node. Surgeon was not optimistic that he got enough tissue (didn't want to risk severing a nerve) -- but turned out they were able to confirm it is DLBCL.

We don't know if it is relapsed, or was never actually gone - just not enough to show up on PET or BW back in January.

Between the biopsy surgery and the pressure the lymph node is putting on the nerves, my partner has lost most of the use of her right arm and hand. (Yes, she is right-handed!)

THey are planning on starting radiation to that one node this week (Wed) for 20 treatments, and then they plan to do ICE, mega-dose Cytoxan, and an autologous stem cell transplant. Her oncology team is optimistic -- she is relatively young (56), otherwise healthy, and responded well to chemo the first time (though she is allergic to Rituxan -- caused pneumonitis, so it is not an option for her).

What advice or guidance can you all offer about preparing for a stem cell transplant? How bad is it? What do we need to know?

Any and all information is welcome. The docs seem to make light of it a little - saying things like "You'll tolerate it just fine".....

If it matters, we (she) are being treated at Dana Farber in Boston, and will have the stem cell transplant at Brigham and Women's Hospital next door.
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DURANGO:

My husband had an allo, which is easier, so take my thoughts with that in mind.

I decided that actually going through the process is somewhat easier than it looks when you are hearing about it beforehand. Once the conditioning chemo is done and the cells transplanted a lot of the process is waiting for the cells to start producing blood cells, and if things go as planned it can be boring while you wait. "Exciting" is not a good result with a transplant!

It's better than when you get outpatient chemotherapy because the transplant team monitors the patient constantly. My husband was there every day; they were on every little thing that could have possibly presented a problem.

Thus, nothing was allowed to be a big problem. It's not like chemotherapy where they infuse you and you leave and then you have to be on the phone begging the chemo nurse for help if you have problems afterwards.

It is time consuming and you have to clear your schedule to support your partner. Once you get started it will not be as awful as it seems beforehand.

 
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HEIDI:

I had an auto transplant in June of 2009. It was much easier than I anticipated. I had R-ICE chemo prior to being admitted for transplant and R-BEAM as conditioning chemo.

I didn't experience nausea, diarrhea, vomiting or mouth sores. I had one bad day when my counts dropped to the bottom.

I was fevered and achy like you feel with the flu. I had a sore throat for about a week until my counts improved. My appetite was never very good (never mind that the hospital food is awful). I went home on Day +12 (which is the twelfth day after you have the actual infusion of cells).

Definitely encourage your partner to walk every day. I really think it helps speed recovery. If you have any questions, please feel free to ask here or in a private message.

Remember that everyone's experience is different and just take one day at a time.

 
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DPARCH:

Rinse your mouth often with the mouthwash the give you - if you can avoid/reduce mouth sores you can eat better and feel better.

Get up and walk even if you don't feel like it. I got myself a pedometer to make sure I hit a certain number of steps every day and keep myself honest.

Indulge in something you love every day, whether it be a trashy magazine, move you love, food you love etc.

As a caregiver you can help by bringing in comfort food, clothing, entertainment etc.

I just liked having someone there with me to kill time, and I liked when people sent me little packages like stuffed plush blood cells, food, cards, or comfy pajamas.

I have a day-by-day account of my transplant on my blog if you scroll back to march.

Everyone's experience is different, I found it to be a little unpleasant but mostly boring. The worst part of it for me was it was flu season and I didn't get many visitors.
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SUE:

Ice chips helped me a lot in my battle against nausea.

I would recommend that she takes her own pillow with her and also some pillow cases.

The food in the hospital is so bad in most places and the best you can do is maybe bring her bland foods, like rice, chicken soup.

I would also recommend sucking ice or ice pops when she gets Melphalan to reduce mouth sores.

I could not concentrate on TV, movies or most books so I read newspapers, simple detective novels and Alice in Wonderland.


 

Questions to ask the Transplant Team

posted by Cynthia -- NHL-Info

  1. How many transplants has your center done?
  2. Do they have data on the Allogeneic transplants?
  3. How is the nursing staff? The bone marrow transplant coordinator should be able to find all this out.
  4. How often will an attending see you? Should be daily.
  5. 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.
  6. 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?'
  7. 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 passť in Allogeneic transplants. Remember, the graft vs. lymphoma is the chemotherapy substitute for irradiation with an allo transplant.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. Where's my copy of the Bone Marrow Information Guide for patients?
  14. Can I take my PC/laptop into my room (if you want)?
  15. What can I bring to add that "homey" touch and still remain within isolation guidelines?
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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-Hodgkin’s 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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