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Old Sun May 31, 2015, 10:05 AM
SkipM SkipM is offline
Join Date: Nov 2007
Location: Philadelphia, PA
Posts: 19
Red face Moving on to Dacogen and Exjade

I was diagonsed with MDS in June of 2007. I am considered low int with my WBC, RBC and platelets in the low range. I do not have any other adnormalities in my blood. I have been on Neupogen, Procrit and Revlimid.
Neupogen only has a temporary effect on my counts, Procrit did not do anything for me. I was on Revlimid for 4 or 5 years. I lost count on that one. The Revlimid kept my RBC up in the 9 range which I thought was great. My body seems to adapt pretty well to the lower levels. I still work full time and am working on getting 2 kids through college and grad school.
Last fall my platelets fell to the 20 range. My Dr. took me off of the Revlimid which caused my RBC level to drop to the 7+ range. Since Jan. I have had 5 RBC transfusions and 3 platelet transfusions. Starting on 6/8 I will start my first round of Dacogen. My Ferritin level came back just under 3000. Dr prescribed Exjade but Anthem Blue Cross has refused payment since my platelets are low. Dr. is trying to work out with Ins Co.
Dr. has intiatiated a search for a transplant but is putting this off as a last resort. Dr. opionion is why put you through a life threatening procedure when as of now your diease is not life threatening.
Has anyone been on Dacogen and Exjade at the same time? My work is flexable so the Dacogen treatments should not be effected. I have always
considered up to now as MDS as a inconvinence that I could get around. Most people do not even know that I have this. Just trying to figure out what I should expect in this phase.
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Old Sun May 31, 2015, 12:49 PM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Have you had a bone marrow biopsy? What was your blast count?

You said, I ... considered up to now as MDS as a inconvinence that I could get around". Be careful and not get "behind the curve" with MDS. I went from zero to full blown MDS in about 6 months. Then was on Vidaza for eight months to get my counts ready for a SCT. I had no transfusions before the transplant and felt fine. I was walking the six miles golfing 18 holes right up until the transplant. The rate of progression of my MDS was alarming when first diagnosed until the Vidaza reversed the disease going into SCT.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Sun May 31, 2015 at 01:03 PM.
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Old Sun May 31, 2015, 03:12 PM
SkipM SkipM is offline
Join Date: Nov 2007
Location: Philadelphia, PA
Posts: 19
thanks Bailie,
I have had 10 BMB's over the last 8 years. With 3 in the last 5 months. Everthing else is staying normal. Blasts are under 5%. I'm listening to my body when I need to slow down. But I'm not going to sit around and wait for everything to hit the fan.
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