Thought I was all alone until now.

[Dick S]

Hi y'all, I am so glad to find you. My son found the AA&MDSIF and they reffered me to this site and I am so grateful.
I am a 73 yr. old male and have been getting care from the VA Hosp. in West Palm Beach. In Feb. 2006 they noticed I was going anemic and later diagnosed me as having MDS based on my blood tests, but have not yet to date done a bone marrow biopsy.
I need to demand more info from them, but at present i know my hematocrit is at 33.5 and hemoglobin at 10.8, that's all I know. They say Procrit is out due to a previous heart problem. Some talk (hematoligist) about transfusions but my "numbers" are not low enough for them to start anything. Seems some doctors know so little about this disease.
I have bad bouts with extreme fatigue and just plain "lack of oxygen". Some days, I can't even tie my shoe, but I guess you guys know what I mean.
I have requested a referral to Moffitt which is only about 85 miles from me.
Confused, alone and don't know where to turn,:confused:but I am sick and tired of being tired. So glad I found you.
Dick

[Neil Cuadra]

Hi Dick.

Do you need the referral just to get an initial consultation at Moffitt (officially known as the H. Lee Moffitt Cancer Center and Research Institute (http://www.moffitt.org/) at the University of South Florida)?

The sooner you can do that, the sooner you can get your questions answered.

The VA Hospital is no doubt much less familiar with MDS than The Moffitt Center, which participates in the The Bone Marrow Failure Disease Consortium (BMFDC) (http://rarediseasesnetwork.epi.usf.edu/bmfdc). Their expertise will be invaluable in answering your questions, reviewing the diagnosis, and making recommendations.

[knstone]

I agree with Neil, you need to go to Moffett as soon as possible. Without a BMB I'm not sure a definitive MDS diagnosis can be made, why hasn't the VA done one?

Dr. Alan List at Moffett is a long time researcher with Revlimid, a drug that helps many MDS patients. I'm having a great response to Revlimid.

It would be good to get the MDS definitely identified and if you have it start some meds as quickly as possible, doing so could prevent blood transfusions and help control the disease.

I'm not sure you can get some of these drugs at the VA, Medicare part D covers Revlimid and Vidaza (2 MDS drugs) in most states. The cost is high however, Revlimid is approx $7358/month retail. Medicare part D will cost one around $4000 the first month to get thru the "donut hole", then one pays 5% or approx $368/month. Depending on your level of income you can get assistance in some cases.

Keep researching MDS and try to get to Moffett ASAP.

[Dick S]

Keep researching MDS and try to get to Moffett ASAP.

Thanks Kirby, I'm working on it. I haven't responder for a few days as I have been "down" which I am sure you all know what I mean.

[Dick S]

FINALLY! The VA will finally take a BMB on Tuesday 4/29 because my CBC showed that the White cells are now dropping and the monocytes are up. I requested a copy of that Blood Lab, but don't have it yet. Hopefully sometime after next Tuesday I will finally be able to put a "real" name (ie RAEB or RARS something or other) on what I have instead of the general "myelodyspasia". I hate being held in limbo. Thank you all for listening.

Dick