Hi All!
I need your help.
I heard back from Dr. Matt Olnes, the Principal Investigator on the NIH
Campath Trial in which I have been participating, to whom I had sent my latest bone marrow biopsy reports.
The meat of his response was:
"The decrease in trisomy 8 may be an effect of immune suppression. However, your continued lack of erythroid response remains a lingering problem, and given that it’s been close to a year since we treated you, it is unlikely that we’ll see a response this late.
I think it is a good time to consider other therapies at this point vs continuing with supportive care. Revlimid would be a reasonable drug to try. The down sides are the risk of lowering your platelet and/or WBC while on it (it usually rebounds after stopping it), and a low risk of blood clots."
So, it's time for me to go shopping for my next therapy, and I want your help!
I'm going to be collecting as much info as I can on several options -- some of which I don't even know about yet. I'm a pretty good Googler, of course, and can go find information on my own. But why should I let this incredible pool of talent called "marrowforums" go to waste?
In the newspaper biz, something called "crowdsourcing" is all the rage. That's when you get streams of info coming in from regular citizens on the scene or in the battle -- like all those tweets and YouTubes coming in from Cairo during the uprising.
So I want to use my pals on marrowforums to "crowdsource" my research on my next treatment.
Here's my thinking so far:
What we aren't going to do --
Transplant. Not as long as I'm INT-1 with no appreciable increase in blasts and no really nasty chromosomal abnormalities, like Monosomy 7. So transplant is out for now.
Hypomethylating agents (Vidaza & Dacogen). These have proven themselves for high-risk folks but not low-risk folks. Better to save them for later. So these are out of consideration, too.
What we are considering --
Revlimid. I'm not 5q minus, but there are several trials underway with Revlimid for non 5q minus, low risk folks -- particularly those with primarily RBC issues. Response rates, as I understand it, are pretty good. My platelets, at 85-95, should be high enough that the well-known negative impact of Revlimid on platelets shouldn't put me in the danger zone.
Ezatiostat. This new drug, by Telik, has been trialed some and shown pretty good response rates, with transfusion independence in 35% and transfusion reduction in 61% of MDS patients in a phase 1 trial of an oral formulation. Interestingly, a Phase 1-2a trial of an injectable version showed poorer results.
HDAC Inhibitors. Valproic acid and all its cousins are another option, though most of the trials for these seem to combine them with Vidaza or Dacogen in higher-risk patients. I'm not inclined to got that route, but I am interested in their use in lower-risk patients.
What else? You may have run across other drugs that would be appropriate. Let me hear about them.
If you have access to research on any of these, or firsthand experience, I'd love to hear about it.
Both my docs are going to lean toward Revlimid, and I may lean that way, too. But I want to leave no stone unturned. And I'd be truly grateful for your help in turning over the rocks I know about and finding new rocks to turn over.
I'll be sharing summaries of whatever I learn with the marrowforums community, so we all can benefit.
Thanks in advance for your data, experiences, and thoughts.
Greg