Quote:
Originally Posted by Zoe's Life
S,
I was diagnosed at 47. Since then I have "met" many people younger than I am who are diagnosed. In fact, in Germany a study was conducted which included 232 patients under 50. The same study referred to other studies which had 151 patients under 50 and another study with 205 patients under 60. I don't think it is as uncommon as people think.
I am concerned that your dad is still on erythropoetin if it isn't working (I think transfusions every 2-3 weeks isn't working, unless he was receiving them more frequently before that). I can't cite them right now (maybe someone else can), but I think there have been problems with continuing erythropoetin when it isn't working. Honestly, I don't even recall the problems at the moment.
Do you know what, if any, chromosomes are affected? A lot of people here have had great success with Vidaza. Personally, I would try it if I were getting frequent transfusions, although my next drug will likely be Revlimid.
Zoe
|
Yes, MDS isn't as uncommon for younger people as its made out to be. And we've discontinued EPO injections for dad now. Glad you pointed it out though.
As for the chromosomes affected, this is what the cytogenetics (FISH) stated -
"nuc ish(ABL1,BCR)x2[198/200]
i.e. there was no BCR-ABL fusion in 99% of the nuclei analysed
nuc ish(EGR1, D5S23, D5S721)x1[183/200]
i.e. there was both EGR1 and D5S23, D5S721 deletion in 91% of the nuclei. FISH pattern suggestive of monosomy 5.
nuch ish(D721x2),(D7S486x1)[170/200]
i.e. there was 7q deletion in 85% of nuclei analysed. In myelodysplastic syndrome, IPSS cytogenetic score is therefore equal to 1 (high risk IPSS)"
So that means monosomy 5 and 7q deletion. In another report there was a third one - trisomy 8 in 70% interphase cells.