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Old Fri May 27, 2011, 09:53 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
NIH Campath Trial -- Six Month BMB

They say that no news is good news, though that's not necessarily a comforting thought for those of us in the news business.

It may well be the truth when it comes to the results of my recent bone marrow biopsy at NIH. The procedure was part of the six-month follow-up and is the first biopsy I've had since October, during my screening appointment for the Campath trial.

I don't have the actual lab reports in hand, just a brief email from Dr. Matt Olnes, but the news is both boring and encouraging: no change.

My marrow is normo-cellular, with trilineage dysplasia, less than five percent blasts, and the same abnormalities as seven months ago: trisomy 8 and a duplication in the long arm of chromosome 1 in a percentage of the cells analyzed.

Why is no change good news? In the theory behind the Campath trial, we aren't trying to fix or kill the abnormal stem cells. We were trying to stop the autoimmune war in my bone marrow that had my T-cells attacking my stem cells -- a war that may have caused the abnormalities in the first place.

The risk -- and what I feared this biopsy might reveal -- is that the aberrant stems cells, the "clone," would continue to evolve, taking on additional mutations, like monosomy 7 or other higher-risk abnormalities that might signal the disease is progressing. Or the biopsy might have shown a growing percentage of blasts, another scary development.

But the biopsy showed none of this.

That suggests there is currently a cease-fire underway in my marrow, and my blood-producing factory is having a chance to rebuild.

And, in fact, all my counts are up compared to their level when I entered the trial, with the exception of hemoglobin, which is why I still need red cell transfusions every four weeks. And the solution to that problem, we hope, is a matter of time.

These results cement my resolve to remain in the trial, and wait for improvement.

The one question that Dr. Olnes' email did not reveal -- but that I hope to have the answer to next week -- is whether the percentage of abnormal stem cells has increased significantly. Past biopsies have pegged the percentage at roughly fifty percent. The lab folks only look at twenty cells to do this analysis, so the percentages have to be taken with a grain of salt. But finding that all of my cells now have the abnormalities would be a cause for concern.

On the other hand, even that would not change my decision about waiting giving my marrow longer to heal.
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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