Hematopoietic stem cell transplantations

Hey all--
I'm 'transplanting' a response by user Bobbie regarding an autologous stem cell transplantation (read her original post here) into a new post as a way to kick-start a thread on the subject of hematopoietic stem cell transplantation (HSCT).

Feel free to post questions and share experiences, anything and everything on the topic of stem cell transplants ...

From Bobbie:
"I had a peripheral blood stem cell transplant. I had lots of tests before the transplant to make sure I was in good enough health. A week before the transplant they took out my stem cells through a catherer in my chest. It was painless but took about 5 hours each dayfor 4 days.

"A week later I was hospitalized for radiation 2 times a day for 4 days, then a mega dose of chemotherapy. I was lucky and virtually had no side effects.

"Then they put the stems back in me. I was in the hospital about 3 weeks, at which time we waited for my blood counts to come back up.

"That's when I experienced the nausea and diarhea. I lost my appetite and had an awful taste in my mouth.

"Came home and for two weeks I was in total isolation. No dog, no drapes, no dust, etc. etc. I lost 10 pounds and the bad taste and nausea stayed with me for about 4 months.

"It is now 130 days since transplant, and I feel 90% better. I am doing things that I thought I could never do again.

"Anyone who has to have a PBST, please hang in there. IT DOES GET BETTER."

A couple good resources:

Information on many aspects of transplantations from the National Marrow Donor Program.

A PDF file pamphlet on transplantations from The Leukemia & Lymphoma Society.

I have just had an allogeneic transplant - reduced intensity conditioning (RIC) using fludarabine and mephalan. I'm at day 56 now and awaiting day 40 restaging bone marrow morphology
and chimerism studies.

I go to haematology daystay (outpatient) every week for a variety of blood tests to monitor
my condition - it's is hard because I tire easily and because I'm living week to week in relation to test results that may indicate dire things - relapse being my worst fear.

Reduced intensity allogeneic transplant success depends on many things (some clearly unknown) - disease, status prior to transplant, engraftment and most significantly graft vs lymphoma effect - this phenomenon is not amenable to precise control by doctors - they know it happens, but they can't necessarily make it happen in any one instance.

my concerns centre around my disease -angioimmunoblastic t-cell lymphoma (nasty) - and my disease status prior to transplant - not ideal, but reading my notes does not give me a clear indication of what it was -disease status e.g. complete remission, chemosensitive, refactory prior to transplant is correlated with survival and disease free status after transplant in AITL

I do not have ready access to a doctor who can answer my questions - this heightens fear in the face of uncertainty for me.

Thank you for reposting! My story is almost exactly the same as Bobbie's. I am 7 weeks post-transplant and my taste has returned to about 90%, the skin on my feet and palms has just finished peeling off and I finally discovered a tiny bit of peach fuzz on my head today! I know that it does get better, it is just a matter of time and patience. :o)

How long did you stayed in the hospital? Did you have the PSBC transplant?

donette

just wrote a long reply to you about different sorts of transplants and then lost the lot when my internet connection failed
will try again tomorrow

Am sorry I saw looking forward for it. When you are writing do in in mswords then copy it and incase you lost it you have it save in Msword hope this help. This is how I wrote my mail sometime. Thanks…

donette

I'm off to the hospital tomorrow -outpatient treatment -for blood tests. I have a full blood count, electrolytes, LDH, cytomegalovirus(sp?), trough cyclosporine and some others too.
This is part of my treatment post allogeneic stem cell transplant. I'm also hoping to get Day 40 bone marrow chimerism and morphology results -some apprehension about this.

So, after a transplant there is a lot of follow-up monitoring - so far the only intervention I have needed is magnesium transfusion and a drug (felodopine) for high blood pressure.

The high blood pressure is a side effect of another drug that is part of my post-transplant recovery. This drug is cyclosporine -a drug that was revolutionary in the history of transplantation. In solid organ transplants, this drug is used to suppress the recipient's immune system to prevent the person rejecting the donated organ. in the case of an allogeneic transplant this drug suppresses the donated bone-marrow stem cells so they don't start damaging the recipient's body. When this damage does happen it is called Graft Versus Host Disease -GVHD.

So far I haven't had any GVHD.

Thanks and please let me know how everything works out for you

donette 26

I haven’t finished telling you about an allogeneic transplant is like but I have to do it in installments because it is to taxing for me to do it all in one go - tired after transplant.

I checked back over some of your posts and we don’t have the same disease. I have a disease called non-hodgkins angioimmunoblastic t-cell lymphoma and I think that you may have -sorry just checking now to determine what you’ve sald about your disease.