Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Feb 8, 2015, 01:54 AM
Jme Jme is offline
Member
 
Join Date: Feb 2015
Location: Australia
Posts: 2
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.
Reply With Quote
  #2  
Old Sun Feb 8, 2015, 06:11 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
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.
Reply With Quote
  #3  
Old Sun Feb 8, 2015, 01:30 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
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.
Reply With Quote
  #4  
Old Mon Feb 9, 2015, 01:22 PM
Whizbang Whizbang is offline
Member
 
Join Date: Aug 2013
Location: Central NJ
Posts: 299
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
__________________
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)
Reply With Quote
  #5  
Old Tue Feb 10, 2015, 07:43 AM
Jme Jme is offline
Member
 
Join Date: Feb 2015
Location: Australia
Posts: 2
Thanks all for the responses. My dad is not doing too well. But I really appreciate the time you guys took to respond.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Dad newly diagnosed Nervy Tell Your Story 3 Mon Jul 23, 2018 01:31 AM
Dad newly dx w/therapy related MDS- RAEB II Val702 Tell Your Story 2 Sun Feb 19, 2017 10:12 AM
Dad 71 just diagnosed with AML Joy in Toronto Questions and Answers 2 Wed Feb 18, 2015 09:24 PM
Dad with AML no longer responding to Vidaza, looking for alternatives. LJacobs Tell Your Story 0 Thu Feb 28, 2013 01:49 AM
Dad diagnosed with MDS (RAEB-1); no treatment as of now S001 MDS 20 Wed Aug 25, 2010 09:44 AM


All times are GMT -4. The time now is 03:59 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org