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Old Sun Aug 15, 2010, 05:49 AM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Treatment in UK

Hi Jools,
You know in the UK the authorities think Vidaza is too expensive and the MDS patients in your country are not allowed to get Vidaza though the drug is approved in the EU. The correct treatment of RAEB2 is Vidaza or stem cell transplantation if the patient is in good condition and not too old.

Here is a link to clinical trials for MDS patients in the UK:
http://clinicaltrials.gov/ct2/results?term=mds+and+uk

As you can see there is one study (number 7) with Azacytidine (Vidaza) for the treatment of MDS/AML with high risk - chromosome 7 and or complex cytogenetic abnormalities. That means that if your husband has a chromosome 7 aberration or 3 or more chromosome aberrations he can participate in that study. Have you asked if your husband has any chromosome aberrations and if he has aberrations which aberrations he has?

Then patients with RAEB2 can participate in a study where they get a stem cell transplantation (number 5). They don't write anything about age in the exclusion criteria but he has to have a HLA compatible sibling donor - that is a close relative that is a good match with similar stem cells.

Both these studies are carried out in King's College Hospital, London, the hospital Debbie told you about. You could contact the hospital and ask for treatment options for your husband - perhaps they could give him Vidaza off record.

Don't give up!
Kind regards
Birgitta-A
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