Information + Vidaza/decitibine

[hmblume]

1. Our local SF Bay Area MDS Support Group meets Sun Nov 13 at 2 PM, Park Blvd Presbyterian Church, 4101 Park Blvd, Oakland CA. Any Bay Area
lurker and/or visitor is welcome. I have found the group immensely helpful.

2. AAMDSI Foundation and Celgene are sponsoring patient Q/A sessions and Celgene presentations, as follows: Cleveland OH Nov 7 Boston MA
Nov 14 Baltimore MD Nov 22. The presenting doctors and topics sound great. If anyone attends, a short report would be nice. Revlimid should be featured. Contact AAMDSI Foundation.

3. I put together a CMML mailing list but have been away for a month, and need to update. I also see a fair amount of CMML activity since late Sept on this web-site after a long hiatus.

4. Vidaza (pending my being corrected) Pharmion handed out two brochures at the AAMDSI late July patient update conference in Denver: ‘Living with MDS’ and ‘Treating MDS with Vidaza’. Probably available from Pharmion Tel 1-866-742-7646.
They quote with Vidaza 6% CR 10% PR and 24% being helped, i. e. a slower decline in “Quality of Life”. Dr. Gotlib (Peter Greenberg’s associate) quoted 7% CR 16% PR and 40% helped, citing V AZA and J. Clinical Oncology 2002. On page 2429 of that Journal, a “hard for me to read” paper by Silverman et al described his trial of Vidaza. About 6 of 150 were CMML; from this it is hard for me to accept that all variants of MDS have the same percentage results, although other data may support this. A number were moved from control group to Vidaza during the trial; the percent being helped looks subject to interpretation. AZA C was cited. At Denver it seemed agreed that a set of 7 doses should be repeated 4 times. I need clarification on V AZA vs. AZA C.
The Journal ‘Blood’ Dec 2003 described a trial in progress on decitibine (5-AZA-2′-
deoxycitibine) (Sp?) In this trial, platelet counts were rising, whereas I have a recollection that some patients had Vidaza stopped before 4 sets of treatment because of declining platelet
count. I am grasping for straws but I have hopes for decitibine. On the government trials web-site a decitibine trial described trying to find optimum dose and number of doses per set.
Over the next 3 months I hope to get clarifications on this and also read more in the journal ‘Blood’. Meanwhile my counts decline but I feel great and am active.

[Luke and Margaret]

Hi
My oncologist at PMH was involved in the clinical trials for decitibine. His feeling was that the drug was incredibly promising. However, he believes that approval and release are going to be slow to come. There were problems with the rigour of the Phase III trials that need to be sorted out, and there is some kind of major shift happening in the corporation that might affect the resources to sort out problems. It is coming, and it is promising, but it may take many months yet before we can access it unless you manage to get into a trial.

The Vidaza information you received in the brochure is covered in the clinical trials information on the Pharmion Vidaza website. It’s in the professionals section.
http://www.vidaza.com/corporateweb/vidazaus/homeB.nsf/Content/Home

You’re right, the number of CMML patients was very low in the Phase III trials. However, on these boards we’ve seen at least as many CMML patients as were in the trial, report positive results; we’ve had several reports of remission.

I don’t know if there is a plan to gather field data, but there should be. It’s looking heartening from what I can gather here.
Margaret

Margaret

[Bec]

Hey Blume and Margaret,

Thanks for update on decitibine. I have been looking for info (that I can understand ha!).

My Dad is looking into possible trial but he wants to know side effects.

Thank you again,
Bec

[Author]

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