Crowdsourcing my next therapy -- Get your 2 cents in!

[Birgitta-A]

Hi Greg,
You know I got my dx 2006 and spend about 2 hours a day at my computer since then. I belong to several supportgroups, have many drug companies as "favorites" and drugs as Google alerts, look at PubMed, follow the abstracts from the big conferences and so on.

Hope they will show dr Sekeres webinar at the AA MDS home site later.

I received txs about once a month during 4 years (May 2006-April 2010). The interval was longer during short periods when I received different iron chelators like Desferal, Ferriprox (not approved in the US) and Exjade.

Then rather suddenly May 2010 I had to have txs every week and my dysfunctional platelets decreased to 22. I was afraid of getting a brain bleeding so I accepted Thalidomide and was very surprised when my platelets after one month was 43. Now it is one year since I needed a tx and I am very thankful for the good response.

I have had several irregular antibodies since dx though I never got any txs before dx and have had to leave blood for X-test the day before tx. I have much more hemolysis than most patients due to these antibodies.

I don't know much about SCT (Ruth is the expert) but I have not read anything about antibodies and SCT.
Kind regards
Birgitta-A

[Bob C]

Hi Greg
I Just joined "Marrow forums and" am please with what I see. So I would like to relate my experiences with MDS drugs. First off I am low risk with blasts under 5%. I have been tested for 5 Q and am negative. My whites, platelets and neutrophils are all acceptable. It is the HGB that has been my prroblem. I was notified on 11-28-07 that I had low risk MDS. I spent a year on Procrit, helped until it lost efectivness, the I went to Vidiza, looked good at first but also lost effectiveness, and the Dr finally got me on Revlimid and stating off on 10mg a day and in 6 weeks, every thing took a dive, including whites, plateletts, everthing, so he stopped the revlimid and with weekly transfussions finally got me back to a point that we could restat Revlimid at 5mg every other day for a week, then a week off and then a week on.
With only 8, 5mg tablets a month, I have been slowly weand off of transfusions, I am now in the 3rd month with no transfusions and am so thrilled, I just want to pass on my good fortune. So naturally I recomened you try the Revlimid. On last thing, no transfusions is great but the fatigue is still there.

Bob C

[cheri]

Hi Greg
Just wondering what you are thinking these days....how is your research going?