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#1
Sat Mar 27, 2010, 11:44 AM
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when vidaza stops working
Hi everyone, My husband can't continue his Vidaza because of low platelets. What is our next step? It has been one month since his last treatment.Thanks for any input that you may have. I discussed promacta with his doctor but he wasn't too keen on the idea. Any suggestions? Please help.
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Husband diagnosed 10/08 RAEB-2 Started Vidaza treatments in Jan 09 until now 
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#2
Sat Mar 27, 2010, 03:03 PM
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After Vidaza
Hi Rose,
You know there is only one drug approved in the US for MDS except Vidaza and that is Dacogen. Then patients with the chromosome aberration 5q- can have Revlimid. Other patients have good effect with the histone deacetylase inhibitors like Epival or Zolinza but these drugs are not approved for MDS. If your husband had good effect when he was treated with Vidaza - that is less blasts and higher HGB - then he perhaps should continue with that drug. We ought to be more firm with our doctors about Promacta even if we not have seen the results from the trials with MDS patients. Your doctor maybe hesitates because he isn't used to the paper work with Promacta. Look what Kirby has written about how to get Promacta in the US. Kind regards Birgitta-A
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#3
Sat Mar 27, 2010, 07:09 PM
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Thankyou, I will be more forceful with the doctor.
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Husband diagnosed 10/08 RAEB-2 Started Vidaza treatments in Jan 09 until now
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#4
Sun Mar 28, 2010, 10:20 PM
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Promacta
Hi Rose,
PromactaCares.com can help you. This link describes the program http://www.promactacares.com/dispense.html#p_1 Promacta is not approved for MDS, but it can be tried using the special program. A trial of Promacta for MDS patients is being planned but has not started yet. You can call Promacta Cares to get information on how you might get it under a special arrangement. Hope this helps.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza 6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%. 2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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#5
Mon Mar 29, 2010, 05:30 AM
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Trials with Promacta in MDS patients
Hi Kirby,
Thank you for all info about how to get Promacta when you have MDS  !You know there are 2 trials in MDS patients: http://clinicaltrials.gov/ct2/show/N...cta+mds&rank=1 and http://clinicaltrials.gov/ct2/show/N...cta+mds&rank=2 The first trial is really not in MDS patients since the patients should have more than 20% blasts in the bone marrow - in fact they have AML. The second one has a study start date July 2009 and an estimated study completion date December 2010. Hope they will get the 30 patients they need soon! Kind regards Birgitta-A
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