Hi, have been following all the posts since my diagnosis the end of Oct/06. It’s been a long road getting to this – 18 mo’s! Have seen so many specialist and so many tests that I can’t keep track. Went through Mayo Clinic with no results. Even though I think Mayo was very through, the feeling was when they couldn’t find anything – they gave up and sent me off. They did do a BM Feb/06 with somewhat normal results – Oncologist saying “you have too many white cells in your bone marrow that aren’t getting into your blood stream”, but no plans for anything in the future – just sent me off to find another Hemotologist outside of Mayo. After firing the 1st one I found, I went on to the one that did another BM and immediately came up with MDS (all within two weeks of first appt) My WC count hangs around 1.2, RC 3.34, Neut 0.5, Platelets 32, Hemocrt 30.7 and Hemoglb 10.1. I just found out that there are no cytropenis or chrom. involvement. On the IPSS scale he put me at Intermediat-1 level.
Tried starting Vidaza after receiving 3 shots each of procrit and Neupogen. After two vidaza injections he stopped as he said “your counts are in the toilet”. Insteat 2-weeks ago he gave me a Neulasta and Aranesp injections. Am supposed to begin Vidaza again starting Mon 12/18/06. We’ll see how it goes.
It has helped me very much to be reading all the coments and to know that I’m not the only one out there with this rare disease.
What’s this about a new “vacine” that has shown great results. Is it at the FDA for approval or still in trials? Thanks for sharing all your insights
Phyllis
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