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  #1  
Old Sat Mar 27, 2010, 11:44 AM
rose mcmillin rose mcmillin is offline
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Location: Fort Myers, Fl Lee Cnty
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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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Old Sat Mar 27, 2010, 03:03 PM
Birgitta-A Birgitta-A is offline
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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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Old Sat Mar 27, 2010, 07:09 PM
rose mcmillin rose mcmillin is offline
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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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Old Sun Mar 28, 2010, 10:20 PM
knstone knstone is offline
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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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Old Mon Mar 29, 2010, 05:30 AM
Birgitta-A Birgitta-A is offline
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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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