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MDS and Dacogen

December 11, 2008

I have a friend who is diagnozed with MDS, he is a RCMD type. He was treated with 10 cycles of VIDAZA last year and after he was no longer responsive to Vidaza. Then, the doctor turned to use the Dacogen and if the patient is still unable to respond to the medecine again, then, the blood and platlets and or other medicine will be treated due to the neccessity and symtomps. To my knowldege, he has finished the 2nd cycle of this medicine 2nd last month (5 rfusions), the 3rd cycle should start within 4-6 weeks after the 2nd treatment.  The 3rd cycle is starting right away
 but due to result of blood investigation last week (low white blood cound, low red blood count and low platlets) the treatment postponed and wait for the CBC. result tomorrow if it is satisfied the 3rd treatment will start on Tuesday.
 
He is wondering about the effectiveness of Dacogen and the survival rate from patients who had used the drug.  If you can provide any information regarding the treatment with Dacogen, responsiveness from other patients and the survival period, it will be much helpful to us.  If Dacogen fails, are there other types of drugs that are recommended?  Any suggestion would be appreciated.

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2 Comments
  1. Leigh permalink

    My name is Leigh Clark and I am the patient educator with the Aplastic Anemia and MDS International Foundation. As the patient educator for the Aplastic Anemia & MDS International Foundation (www.aamds.org), I understand how important it is for people affected by aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemogloburnia (PNH) to get information and support from other patients and caregivers who know what they are going through.
    The AA&MDSIF provides free educational materials, publishes a free newsletter and eBulletins, funds research around the country, advocates for patients on Capitol Hill and with government agencies, offers a support network, offers financial assistance, and hosts an annual patient and family conference where patients can learn the latest in research advances and treatment options as well as connect with others. We welcome your questions, thoughts, and ideas: the Foundation is here to give you answers, support, and hope.

    I’d be happy to help answer your questions. Please feel free to give me a call – 800-747-2820 or email clark@aamds.org. We are here to help.

  2. Thanks so much Leigh I will pass on this information to my friend and we will likely contact you soon.

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