AA MDS Inten'l Symposium – Bethesda 3-11,2010

[Kenneth_In_Va]

I just returned from the Aplastic Anemia & Myelodysplastic Syndrome International Foundation sponsored Symposium that was held in Bethesda MD on March 11th and 12.

I have to say that I am very impressed with the medical professionals and researchers who presented their current research and previewed their articles that will be coming up in BLOOD, British Haemotology and other periodicals that cover our disorders. I didn’t realize that the meeting was only for researchers and was the only non-PhD or MD there.

I am very excited about all the work that is being done on our diseases. They presented work on AA, MDS and PNH but MDS was in the forefront.

I learned that there is a new oral version of Vidaza that has just entered Phase 1 trials. It’s aimed at being used by out-patients much like Revlimid currently is.

I learned how in Germany they are miles ahead of us here in the states in the was they run their Transplant program. MDS patients are urged to register early as soon as they are diagnosed and they believe that, since that is still the only "cure" for the condition that a transplant should happen as soon as possible as the patient is likely never stronger later.

I saw that there is a great deal of NEW lab work going on in our National Institutes. I am more confident than I was before the meeting that there is some hope on the horizon if we can all hang in there.

Good health to my fellow travels…

Gene In Virginia

[Zoe]

Sounds like you learned a lot!

Quote: I learned how in Germany they are miles ahead of us here in the states in the was they run their Transplant program. MDS patients are urged to register early as soon as they are diagnosed and they believe that, since that is still the only "cure" for the condition that a transplant should happen as soon as possible as the patient is likely never stronger later.

Very interesting. Is this for all patients? Even 5q-? My hemo says 5q are basically watch and wait with some Aranesp, Revlimid and transfusions thrown in. My last hgb jumped up to 10.5! That is with Aranesp. I am starting a new counseling business, and I spent the day moving into a new office, so I was really grateful for the 10.5

Zoe

[Kenneth_In_Va]

I’ll bet you were, Zoe.

I know how you feel! I am also 5q along with a translocation to boot and I have become transfusion independent with a Hgb at 13.2 now thanks to Revlimid. But that’s the pattern in Germany according to the presenter there.

I am going to see how I do on my next (6 mo) BMB and make my mind up then… continue Revlimid and ride it as long as I can. Maybe the fact that my reds are back in the normal range means the 5q is in remission. If, on the other hand, the cytogenics haven’t changed…perhaps I’ll start looking into the transplant route.

I want to believe that there will be more options available next year…I just have to find the best way to get myself to next year…u no?

Gene in Va

[Zoe]

Gene,

Yeah, I do know! I keep holding on for some type of health care reform. My insurance premiums went up 25% this last fiscal year. I am scrambling to keep enough money to pay the premiums. God forbid I lose my insurance. I just keep holding on. We should write a song, Holding on, holding on with MDS. OK, I am exhausted, had a stressful day, and am being dorfy, so I am signing off :^)

Zoe

[celebrations]

Hi,

I have been a MDS-patient IN GERMANY for four years now. I am afraid the representer, you listened to, did not differentiate enough.

I am trisomy 8 and do require RBC transfusions all 14 days in the meanwhile (I had intervalls of 6-8 weeks in the beginning). My MDS-specialists and my hemo gave me EPO and Valproic acid and now I am heading a study with a new drug, not yet approved….,
as you see, FIRST they try every other therapy, BEFORE I get the transplant recommendation.
I do not have blasts yet and my wbc and plts are mostly still in the normal range, I am "only" having this severe anemia and the chromosome aberration…I am supposed to be an INT. 1 patient.
This means watch&wait and try some drugs to gain life time and to keep QOL.

I know a lot of German and European MDS-patiens, since being active in a forum.
Only high-risk MDS-patients are being transplanted, never low risks and INT. 1…

You get the SCT only "at the point of no return", means: increasing blasts, obvious detoriation of the chromosome status, increasing infections and bleedings….

In Germany there is still a mortality rate of 20% ( and a probability of 40%(!) to get a relapse). Although I would grant that we have high standard in our SCT-programs…and constantly there is a lot of serious research around.
I would be interested to know more of the surroundings of SCT in the States,
bye, Bergit

[Zoe]

Birgit,

Thank you for the clarification. It sounds like the process in Germany is similar to the one here in the US. I had been surprised to hear the previous info, as I have a copy of a journal article done on MDS patients under age 50 (the largest study ever done when it was written a few years back). The study was conducted in (forgive my spelling) Dusseldorf. It did say that low and intermediate patients had a survival rate of 86% at 20 years (no transplant). I would be interested to see how this compares to the US.

When you say Germany has a high standard in your SCT programs, what do you mean? Patient qualifications? General expectations?

I always appreciate hearing about research and stats from other countries.

Zoe

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