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MDS Myelodysplastic syndromes

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  #1  
Old Sun Feb 8, 2015, 12:54 AM
Jme Jme is offline
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Dad newly diagnosed with AML

My dad, age 66, has always had low platelet counts and it was suspected he had MDS several years ago but the bone marrow autopsy didn't confirm it. He has been going for 6 monthly blood tests and the recent blood test and bone marrow autopsy shows that he has AML now, with 80% blasts in his bone marrow. He's on weekly blood transfusion now. He has no symptoms so far aside from tiredness.

His doctor has said that his heart is too weak to go through chemotherapy and they're giving him up to 6 months left to live. He went for a second opinion who advised that Dacogen could help but Dacogen is really expensive in Malaysia ($30k a month) and that it has to be taken for life if it does work which is not sustainable for us. My dad has refused to attempt even a four month trial on it because of the costs.

I've seen mention of Vidaza on this forum and from reading up on it, it sounds like its similar to Dacogen though Dacogen might have less side effects. Is Vidaza cheaper than Dacogen?

Does anyone know of any alternative treatments?

It's really difficult for us right now, trying to find treatment but being held back by money.
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  #2  
Old Sun Feb 8, 2015, 05:11 AM
Birgitta-A Birgitta-A is offline
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Cheaper azacitidine

Hi Jme!
Vidaza (azacitidine) is supposed to be a little better than Dacogen but all patients are different.

Now there seems to be chaeper azacitidine than Vidaza - here is a link with info: http://www.business-standard.com/art...2000157_1.html

I don't think there are any alternative treatments for AML.

Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 2006. After positive response to Thalidomide and Revlimid I now have 2.5% blast cells in the blood (AML?) and I am waiting for home care.
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  #3  
Old Sun Feb 8, 2015, 12:30 PM
Neil Cuadra Neil Cuadra is offline
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Another choice is to contact pharmaceutical companies and ask about their patient assistance programs, which can cover the drug costs for individual patients.

You can also ask medical support groups in your country how to find charities that help patients pay for medicine.
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  #4  
Old Mon Feb 9, 2015, 12:22 PM
Whizbang Whizbang is offline
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so sorry

First of all, I am so sorry to hear that medications are so expensive where you live. My husband was diagnosed with MDS june 2013. It's takes more than a bone marrow biopsy to diagnose. It is specific bloodwork that looks at your chromosomes. I have a feeling your dad was not properly diagnosed to begin with. Dacogen put my husband into remission after just 1 month. He had a stem cell transplant in oct 2013 and was doing well for 8 months. July 2014 he was diagnosed with AML. 80% blasts. Did 2 months of inpatient intensive chemo. that only brought the blasts down to 35%. Started a clinical trial in October, but passed away on 12/17 at the age of 46. Dacogen or Vidaza will not cure AML with 80% blasts but it could possibly buy him more time, not sure. Donna wife of Whizbang
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #5  
Old Tue Feb 10, 2015, 06:43 AM
Jme Jme is offline
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Thanks all for the responses. My dad is not doing too well. But I really appreciate the time you guys took to respond.
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