Hi. This is my first post ever to this forum though I've been reading all of your posts for months now. Back in Feb 2012 my mom (71 yrs) was diagnosed with MDS, sub-type RCMD and Trisomy 8. She has no co-morbidities and is in amazing shape with ZERO symptoms. She only found out via blood tests.
I am in IT pro and until Feb knew nothing about this though I feel like I should get a PhD for the amount of research and reading I have done
I'm joking of course but I have a question for the community.
We went immediately from Kentucky to M.D. Anderson in Houston. Because of her subtype and abnormal T-cell population as well as her IPSS score of 1 (intermediate low), the team there felt there could be an immune component to this and have seen amazing results from either low-dose Campath or Cyclosporine... after some pre-requisite tooth extractions she has just started on the Cyclosporine approx three weeks ago.
Now it should be noted here two things: 1. She is hypercelluar and from what I have seen most on CsA are HYPO and 2. Her cytopenias are WBC and Platelets where her red blood cells seem mainly unaffected.
PROBLEM: Her platelet count had been hovering around 35 to 41 pre-CsA.... the very first week they dropped from 39 to 29. One week later they are at 19. The hemoc in Louisville and the Dr. in Houston both are telling her to stay the course, that this is indeed expected. Online I see cytopenia's are experienced in only 2.4% of the users of this drug... granted this drug is not typically a cancer drug.
QUESTION:
Has anyone else seen this marked decrease in platelet from CsA?. With the platelets already so low, it's becoming a game of chicken... if this doesn't work we move on to hypomethelating drugs etc.... anyway, any and all comments etc would be so much appreciated! Thank you.
Chris Plunkett