Monday, January 5, 2009

"If you could see what I'm thinking" Pure Prairie League

This is a letter I wrote to some transplanters considering DLI. It may give you a glimpse of how I am slowly processing my decision. It assumes some basic understanding of the blood lingo but I suspect you can catch my drift with just skimming the content.


Perhaps my story will be of some help. I welcome comments and advice.

I am joining the discussion a bit late, but I have been researching DLI as it looks like I am losing my graft. I had a RIC MUD 12/12 on 7/1/08 for CLL. My T cells never got over 65% and my myeloid lines about 28%. Now I am only 35% donor T cells and 0% B cells,  granulocytes, and monos.

My CLL appears to be in molecular remission. All my doctors say do nothing unless there is a relapse as any treatment is risky, and there is no need to treat falling chimerism in the absence of disease.

Where the RADICAL differences of opinion lies is in what to do if I relapse. Dr. Forman at City of Hope feels a DLI will either do nothing or could unleash severe GVH and perhaps aplastic anemia. That is a frequently fatal potential complication in which the donor T cells attack my host stem cells in my bone marrow, and since in my case there are no donor stem cells left, where are the stem cells to make my blood. He says I should do a second transplant, and skip the risky and futile DLI. Dr Castro as UCSD says there is nothing to lose with a DLI ( done with ATG to reduce the T cell attack), and it may save my graft, is very safe, and aplastic anemia is extremely rare. I am a MD and I am befuddled by the stark contrast in opinions.

I can say this: DLI are potentially fatally, usually from severe GVHD. They are also potentially life saving, especially in CML, but there is good literature in other blood cancers including CLL. Durable remissions even possible cures have followed DLIs. They are done most often with no immunosuppression and usually no chemo for the recipient so the immune attack on both the cancer and the patient can be quite profound. They are much easier on the donor, as they may not need to have the "shots" before to mobilize their stem cells. It is usual just done in less than a day. And it is way cheaper than a SCT.

If my myeloid lines were more donor, I would have a DLI in a heartbeat at the first whisper of a relapse, but the concerns of Dr. Forman (who did my transplant) give me pause. I  honestly don't know what I would do

I am happy to help however I can with questions about DLI. I have several articles on the subject, mostly related to CLL of course, I can forward if you contact me off list.

Be well

Brian, 57 yr family doc & father of 4, dx 9/05 with CLL del 11q  unmutated, CD38+, ITP 9/06 eventually failed steroids, IVIG , Rituxan and splenectomy  controlled w cyclosporin A  Rituxan combo.l CR. RIC MUD HSCT July 1/08  now CR but rejecting graft see


Blogger Unknown said...

What a life we lead (CLL patients) when treatment decisions cause even a well educated physician to be confused.

January 7, 2009 at 9:17 AM  

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