new member

[cary]

my name is cary and I just joined this site. I am 69 and am a Viet Nam vet. I was diagnosed with MDS in Dec. 2017 and started Vidaza (7 days in a row once a month) immediately. I start my 5th week on the 26th. I have had good improvement in white blood cells and platelets. I do have more strength and endurance now than before. White blood cells dropped to .3 in Jan and are up to 14 in Mar. My Dr. did not tell me this is a life threatening condition and said I should lead a long life with it. I guess my case is not as serious as others. Just looking to get more info to better understand this thing and see what my future holds.

[rar]

Depending on the type of MDS you have the range between of life expectancy can be 5 months and never needing treatment. I had MDS RAEB2 high risk with the 5 month expectancy. I had a stem cell transplant almost 4 years ago so you can beat the odds. I am cured of the MDS but still have GVHD issues.

Your being a Viet Nam vet may entitle you to disability due to agent orange exposure. I was pre Veit Nam so even though I was exposed to benzene I was denied disability.

What type MDS do you have?

Ray

[cary]

I did not know there was more than one type. My Dr, did not mention it or I and my wife failed to understand. I will ask when I see him again on 4/3.

[Leigh Clark]

Hi Cary - Dr. David Steensma is conducting a clinical trial study of veterans exposed to agent orange and now diagnosed with MDS. If you are interested in talking with Dr. Steensma, you can contact him by phone, 617-632-3712 or email, David_Steensma@dfci.harvard.edu.

Here is an article about agent orange and MDS, http://www.aamds.org/agent-orange-un...stic-syndromes.

[cary]

Thanks for the tip. I sent him an email today.