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MNladyslipper
Tue Apr 15, 2008, 09:09 PM
Can anyone help to clarify my husband's diagnosis? He was diagnosed the end of January with MDS. The prognosis is 9 - 18 mos. He has 11 out of 20 chromosomes damaged including -5qdeletion, monosomy7 and deletion of 20. Two lines are affected. Two doctors have said he is at an Ipps score of 2 and one said because of the chromosome damage he is at "high risk." His blasts are less than 10%. We thought he was RAEB II because of his IPPS score, but now I read that less than 10% blasts is level I. The doctor also mentioned "overlap syndrome" and "myleoproliferative" on our last visit. Now I am more confused. He is currently on his third cycle of Revlimid with no time off. It is just a continuour perscription every 28 days. He began on 10mg was switched to 5mg and now is on an every other day regime of 5 and 10mg. His hemoglobin has been fairly steady at about 9, his white count is at 1.4 and his neutrophils are at 0.4 after dropping to a 0.2 a couple of weeks ago when he was in the hospital with a week long bout of diverticulitis. We are looking at a cord blood transplant sometime this year at the Univ. of MN - Fairview. Any help or advice would be appreciated. Thanks

Birgitta-A
Wed Apr 16, 2008, 07:18 AM
Hi Bev,
As far as I understand the IPPS score is used more than REABI etcetera. Then you should realize that the prognosis often is much better than in the tables because we have better treatment today.

Here is a link to the diagnostic criteria for MDS. Look at page 35.
http://www.hematologics.com/pdf/ref36.pdf

I had the dx myelofibrosis (a myeloproliferative disease) June 2006 to Sept 2007 and a median of 26 more months to live. Then my dx was changed to MDS Interm-1 with a median of 42 months from dx (May 2006) but of cause I hope to live longer - 42 months is only a rather old statistical figure.

Revlimid is considered to be a very effective treatment for patient with 5q-deletion.

Then I think your husband should have Neupogen or someting similar for his low neutrophils.

Kind regards
Birgitta-A
69 yo, dx MDS May 2006, Myelofibrosis June 2006 - Sept 2007, MDS Interm-1 since Sept 2007, transfusion dependent , Desferal 4 days with transfusion, Neupogen 2 injections/week. Now waiting for Eltrombopag for my low platelets (last count 49), asymptomatic

MNladyslipper
Tue Apr 22, 2008, 06:11 PM
Thanks Brigitta
Doctor's transcript and pathologist report came in. RAEB 1 with lapover myleoproliferative disease - intermediate to high risk because of the chromosome damage. I guess I will try not to worry too much about the numbers. He is doing pretty well right now. CBC tomorrow, so we will know if his neutrophils are above .3. We have had two doctors tell us no neupogen. They said it is very painful and not all that effective for cases like this. So for now, he wears his N95 mask every time he goes outside. He is not allowed to work in his yard or garage until the counts rise. Once he gets to .5, they say he is only in "moderate" concern levels. So we hope for that. We are expecting preventitive surgery to correct diverticulitis in July, so we can move into transplant later in the year.