immunomodulation post hsct

[mayuanqing8]

I am oversee student study at Sydney, my recent visit to my family in China after been away for 2 years made me learned the very sad fact that my dad has been diagnosed of Myelodysplastic Syndromes (MDS) with subtype of RAEB-2 according to the WHO classification system. He was lucky that he got instant HLA matched Bone marrow transplantation from my uncle after the diagnosis, so far, he is about to leave the hospital.

I have read some relevant information about HSCT for MDS patients, which showed that the disease free survival from such therapy was about 50% to 60%, one of the big contributor to the high mortality was viral infection such as CMV and relapse. So far, to my understanding, the critical step to avoid such situation is to reconstruct my dad's immune system quickly, so that the boosted immuno cells can suppress the reactivation of leukemia cells or viral infections. I learned from the literature that extractions from some of the Japanese mushroom, such as D fraction from Maitake and Shitake have significant antitumor and immunomodulatory effects, and there have been many such products available on the medicinal market. However, my concern is that if the administration of such immuno-stimulative drugs will cause severe GVHD in regard to my dad's situation, as it will increase the sensitivity and quantity of both innate and adaptive immuno cells.

I wondering if anyone here have similar experiences or concerns. any suggestions will be sincerely appreciated.

My email address is: mayuanqing8@gmail.com

Alex

[Dick S]

Man, you just talked way over my head like a Specialist or a Scientist. Can you put it in more lay language so a patient like me can understand?

[Birgitta-A]

Hi Alex,
How wonderful that your dad could get a SCT soon after dx and is ready to leave the hospital !

You know it can be very dangerous to boost the immune system with "alternative" drugs. If you look at a very common drug for the immune system like Echinacea they tell you to not use is for diseases like leukemia because it can increase the leukemia cells.

It is true that patients often get opportunistic infections with virus and fungi after SCT. We often have these agents in our bodies before the SCT and they take over when the immune system is weak.

As far as I understand the patients have to try to avoid new infections, eat as well as possible to be able to fight infections and hope that the doctors can identify new infections at once so the patients will get effective treatment.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload and Neupogen for low white blood cells, asymptomatic

[mayuanqing8]

Thank you, Thank you for your concern of my dad's situation, and thank you so much for your remind. I wasn't aware of the potential risk of reactivation of leukemia cells from the administration of immunomodulatory drug.

I wondering if any of the post transplant patients here ever had attempted to use medications to help recover your immune systems. or, is it been not recommended by the doctors due to their unknown risks.

Best wishes

[akita]

Hi Alex,

i also had a allogeneic Stem Cell Transplantion in a similar situation as you father was (20 % blasts in the bone marrow, MDS Raeb-2/ AML 2 according to the WHO-Classification. Raeb-T according to the FAB.- Classification.

This is 2 1/2 years ago. I never tried to make experiences with immunomodulary drugs.

My immune-system is supposedly very down after four chemos and the transplantation. I take Prograf/Tacrolimus, now only 1 mg every three days. I tried to get vaccinations - which is possible also in immunosuppressive status - but only with a "dead" vaccine, for example against some diseases like Streptococcus pneumoniae which is very dangerous for patients with immunosuppression after Stem Cell Transplantation. But my new vaccinations after SZT don`t work. My antibody-titer for Streptcoccus pneumoniae is too low. I repeated the vaccination series, but with no success either. My actual doctor in the hospital thinks the my status is too wead to build up a new immunisation.

This situation is a problem, me thinking that immunomodulary herbs oder drugs could be dangerous. As a have a chronical Graft-versus-Host-Disease, my immune systeme has to be suppressed by immunsuppression, not stimulated. Thats a little sad, but for me the best solution. Without immunosuppression my graft-versus-host-disease would become worser. so it happened since last autumn, when the doctors reduces my immunosuppression. There it could be a solution, - as it is done actually in my case - to try to treat the manifestations of the graft-versus-host disease locally instead of systemic immunosuppression with prednisoloen oder elevated immunosuppression.. Also GVHD-graft-versus-host-disease is dangerous for SZT-Patients, although it prevents a relapse to a certain degree. A better immune-status for me would actually not only increase the risk of relapse, but also for an acerbation of meine GVHD.

How is your father actually?

Best wishes for you and him

Margaret