MDS RAEB 1 (+8)

[anna mi]

Hello, I am new to the forum and would like to thank you all for sharing your experience and all the useful information I have found here.

My father (76) has been diagnosed with MDS RAEB 1 a month ago (9% of blast, low plates at 60, +8 chromosome abnormality) with lower intermediate risk. The doctor suggested Vidaza treatment. I read a lot about this type of MDS know that it has a poor outlook. However I still do not understand what’s the natural path of this disease. As I understand it transforms into AML in some 40% of cases. What about the rest? Is there any chance to live long life with this type of MDS or there is no hope at all? I would be very grateful if somebody could share the experience with this type of MDS.
With kind regards,
Anna

• This topic was modified 6 years, 8 months ago by anna mi.

[garsch]

anna mi, I had low intermediate MDS with tri +8 and q20 abnormality (RCMD). Low platlets is how they finally found the MDS with bone marrow biopsy. I was diagnosed at 64. I tried Vidaza for 6 months and it lowered all my levels to the point where they thought I was in remission but unfortunately it came back. Some people have great results for years I am told. I went back on Vidaza for a few months with no success then my Dr put me on Decibine for 10 days which knocked down the +8 but did nothing for the q20 so after speaking with another Dr at Univ of Chicago and my Dr they agreed I should move forward with the stem cell transplant using a donor. I had the transplant in June of this year. Everyone responds differently to the transplants. I was in the hospital for 29 days and the only complications I had were stomach and bowel issues for a week or so along with a rash. My blood (whites and neutrophils (10.5) are normal now, my hemoglobin (12.3), reds (3.9) are very near normal. except for platelets (73) which are gradually coming around. I saw people of all ages getting transplants when I was there and it’s the only option for a cure. I went to Northwestern Memorial in Chicago and was told I had a 60% chance to cure the disease with transplant. They do numerous transplants per week. I think there was like 30+ people getting transplants when I was there. Yesterday when I was in for my bone marrow biopsy I ran into a gentleman in his 70’s getting his port out who had a transplant the same week I did and his bone marrow showed he was disease free. I should hear on my biopsy next week hoping for the same results, clean and disease free results. One thing I can tell you is over time Vidaza wears you down. If you consider a transplant do it when you are healthy vs waiting. Try Vidaza if it works great, if not talk to a Dr that has done many transplants about your options. I would certainly go to one of the centers of excellence locations on the MDS website because a Dr that deals with MDS on a regular basis knows whats best for your father. Hope that helps.

Gary

[dj carroll]

Hi Anna,

I’m a newbie here, dx’ed in the spring time and have had 3 rounds of Vidaza. Though only 68 not a transplant candidate for the extensive chemo, non-hodgkins lymphoma, since 1998.

Will see if it works, doc says to give it 6 months at least. Easy peasy chemo it is though a ain with the weekly blood draws. I’ve a port, would recommend. which saves veins for blood draws.

You best talk to his doc about the natural course of the disease, imho.

Regards, dj

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