DIAGNOSIS: MDS-RARS

[celebrations]

Hello everybody who reads this:
I am from Germany – so my english is maybe not always adequate –
I am suffering from RARS, diagnosis 26.01.07, suspected since February 2006…
Can you help me with information about this special subtype of mds ????
I would very much get to know people with the same type of disease in order to exchange “experiences”, knowledge, possible therapies and feelings about…
If and when you read me, please answer,
bye
bergit

[bobweinberg]

Hello Bergit,

I was diagnosed with MDS-RARS in May of 98. At that time I was 48 years old but now I am 57. I have been transfused with 2 units of red blood cells every two weeks since then. RARS is unlikely to convert to AML, so it is good from that standpoint. My chromosomes were normal at diagnosis but now show what is called trisomy 21, which I am told is not to worry about. I began chelating because of iron overload in Feb of 1999, using desferal with an infusion pump for 8 hours a day. I switched to Exjade (5 pills dissolved in orange juice each morning)in Jan 06.

About two years ago, my tx frequency increased from once every two weeks to once every 8-12 days. I went on a trial for Revlinmid, but it reduced my platelets to 12,000 from 150,000 and reduced my WBC from 3.5 to 1.5. I was taken off the trial after 6 months since it hurt my platelets and white cells and it did nothing for my red cells.

Once my tx frequency increased, my ferritin (free iron in blood) went up to 1200 (under 200 is normal). I then had an MRI which shows iron overload in my liver – so I may go back on desferal on the pump at a higher dosage.

I am a member of the board of directors of the MDS Foundation, and I think it is essential that you see a doctor who specializes in MDS. One of the board members of the Foundaiton is Charlotte M. Niemeyer, MD, Professor of Pediatrics, University Children’s Hospital, Freiburg, Germany.
I suggest you contact her to determine who is the best MDS referral in your region.

The bottom line is that for the past 9 years I have continued working, getting tx’s at night after work (although I don’t do that any more and now take the day off). I tried to keep my hgb between 10 and 12, but with the increased need for red cells, I now live between 7.8 and 9.8. That has reduced somewhat my quality of life. Nevertheless, I have led an active life, swimming 36 laps a few times a week (when my count is above 8.0) in a 13 meter pool, and I have learned to sail which has become my passion. All cases are different, but that has been my experience so far.

Good Luck

Bob Weinberg

[franb rars dx 12/06 age 57]

I was just recently diagnosed with Ringed Sideroblastic Anemia last fall after having a bone marrow bx done. My blood count dropped gradually since 2002 and at last visit was 9.5. I was told that when it drops below 9.5 will need Revlimed injs. Since I have felt fine all along, no symptoms, I am having difficulty adjusting to having this dx. My Hematologist has not given me much info, found details myself on the American Ca Society website. I was told I have no chromosomal damage, he doesn’t know what caused it, says it will continue to worsen, not sure what to do for it, says Revlimed is next step. Any thoughts out there? Would appreciate anyone who might want to share their experiences. Also, what symptoms can I expect, I was told headache, dizziness, leg pain. Thanks for any input.

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