Question on Complete Stem Cell Transplant

[brison2]

Has anyone out there ever had a complete stem cell transplant? I will be going with my sister in law this coming week to Emory Hospital in Atlanta to find out the details. Would like to hear the good and the bad if you or if you know anyone who has had this done. She has CLL but has the P17 deletion with mutation.

[AussieNeil Partner Administrator]

There are a few members who have had a bone marrow stem cell transplant - or had them recommended and have been able to defer one, perhaps permanently, because they are doing well on new treatments/trials. While their use is decreasing because newer non-chemo agents can provide good remissions not possible with the older chemoimmunity treatments and they may provide a cure, it's not a procedure lightly entered into, particularly as we grow older.

Has your sister in law sought a second opinion? Has she investigated what clinical trials are available to her? Are you able to share your sister in law's CLL history? (But make your post private to this community.)

Brian Koffman bkoffman has blogged about his experiences with his (failed) bone marrow transplant here bkoffman.blogspot.com and is currently doing well on Ibrutinib.

Neil

[Hoffy]

I know one person going through it and it has been very tough. In and out of the hospital for about 5 months so far.

I know another who had AML and did it and is doing well after 1 year so far.

I am not an expert but CAR-T might be another thing to look into.

Look at my posts about the trial at the hutch in Seattle involving ROR1. Although it is still experimental.

Be well

[cook4650 in reply to Hoffy]

Here I am again with a question about "fine tuning." It's my understanding that CAR-T first requires very aggressive chemotherapy before the immune cells can be re-transfused. Isn't this very similar to other types of transplants, including bone marrow transplants?

[Cllcanada Top Poster CURE Hero in reply to cook4650]

In CARs T there may be a conditioning phase where the patient is given cyclophosphamide. Its not very intensive at all...

However, in the Juno trial they added fludarabine to the cyclophosphamide and it resulted in 3 patient deaths, due to neurotoxicity. An absolute tragedy, the study was terminated.

medscape.com/viewarticle/87...

The patient's T cells are engineered and grown in number, then given back to the patient, and they then attack the cell surface target... often CD19 on B cells, but there are other targets that can be used.

pubmedcentralcanada.ca/pmcc...

Stem cells transplants can be from the patient's cells or more often donor cells, the process is vaguely similar, in reality quite different.

[Hoffy]

I am not an expert but the advantage of CAR-T in my opinion is you don't have the graft vs host disease. You don't have that issue with a transplant if you use your own clean cells but they don't seem to do that with CLL .

Also I don't think the FCR is as strong as with a stem cell transplant.

[brison2]

She will have to use a donor for a transplant. If you have CLL with P17 chromosome deletion and mutation you can not use your own.

[MsLockYourPosts Passed Volunteer]

How is your sister doing?