husband with mds

[helen c.]

I POSTED THIS OTHER PLACES TODAY BUT here goes againhusband was dx jan. 08 yesterday may 06 09 after last bmb he was dx with RAEB-2 8-10 % local cancer dr. wants to start chemo in the hospital we are waiting for another opinion from moffitt cancer center in tampa blood tx now every week platletts are low 35 last fri.
he has had only 1 platlett infusion when they were 17 but dr. in tampa said he waits until they are at 10 before he gives them the children wants him to be treated at moffitt but he like local dr. as its closer home and would be easier on me. i want whats best for him please help us decide

[Birgitta-A]

Hi Helen,
When you follow the results of MDS treatment as I do you will be impressed by Moffit Cancer Center that together with MD Anderson Cencer Center and the Mayo clinics are considered to be the best clinics in the world. If you choose Moffitt your husband will get the very best care.
Kind regards
Birgitta-A

[Mike Conlon]

Hi Helen: I think we have talked before. First Birgitta-A always seems to be well informed. When dx in May 07 my plt were 140 so I can't really relate to your problem in regards to extremely low plt. What I can tell you is that I go to Hillman Cancer Center in Pittsburgh and they are quite good. From my experience I would go to a Cancer Center as opposed to a satellite location or a hospital that doesn't specialize in MDS. I believe there is a large difference in the quality of care with the doctors, the nurses and the instant lab results. My labs have been great since Nov. 07 with complete remission in Feb. 09. I continue on Dacogen every eight wks 5 consecutive days. If you feel it's possible to hold out for the second opinion I would try to do so.

Good luck and my prayer will be with both of you.

[helen c.]

thank you so much thats what we are doing waiting to hear fromDr. Saba at moffitt

[launch]

Hi Helen,
I haven't posted in quite sometime, but, I'm back this evening. I agree with Birgitta as does Mike too... If you go to Moffitt, your husband will definately be getting the best care. We live in the Atlanta area, and we decided to go to Emory over the local clinic. The difference in both Emory and especially Moffitt... you're husband will have access to the clinical trials that local hospitals and clinics do not have access too. It will be well worth it. Also, I've heard that Dr.List at Moffitt is an excellent doctor. If I read it correctly, he was the inventor of "Revlimid"... one of the drugs that they use to treat MDS. Good luck to you and your Family...

Cindy

[Charlie]

My husband was diagnoised in 2007 initially with Acute Leukemia after the first biopsy, but after getting shipped to Tulane it was found that he has MDS.The only supportive care he is now doing is Neupogen injections once a week. Tulane was ready to do the STem CEll Transplant. We will be in Houston next week at MD Anderson for a 2nd opinion. Hopefully they will have an alternative treatment option, if not he will be in one of the best places for Stem CEll Transplantation.

[Suzeee]

Thank goodness you are going to MD Anderson. I am being treated there for MDS/CMML and it has been a blessing. I live in Illinois but fly back and forth to Houston. I have been going since April 2009, so if you need any information about where to stay or contact information, let me know and I will tell you what I know.