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MDS and Agent Orange

Home forums Patient Message Board MDS and Agent Orange

This topic contains 13 replies, has 3 voices, and was last updated by  Mark Rogers Mark 1 week, 6 days ago.

Viewing 14 posts - 1 through 14 (of 14 total)
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  • #44009

    Mark Rogers Mark
    Participant

    I am a new subscriber to this forum and glad I found it. I am a Vietnam Veteran and have MDS.. My Hematocrit is now 29 and Hemoglobin is 10.5 so I’m not too serious yet but the values drop every month. I am aware that the VA does NOT recognize MDS as a possible/likely result of Agent Orange or really any other toxin from those years but I am pursuing a claim with the VA to attempt to get them to own up to this…

    I urge anyone who has MDS and is a Nam Vet to do the same… I am already 100% in VA benefits so it won’t help me but will help others later…

    #44010

    rar
    Participant

    See Citation Nr: 0812788

    ORDER

    Service connection for myelodysplastic syndrome (MDS)
    [refractory anemia with excess of blasts, trisomy VIII] or
    acute myelogenous leukemia (AML), claimed to be as a result
    of dioxin or benzene exposure in service, is granted.
    ________________________________
    ANDREW J. MULLEN
    Veterans Law Judge, Board of Veterans’ Appeals
    Department of Veterans Affairs

    The main culprit in agent orange is the benzene used to thin it for spraying. This order seems to grant disability for benzene and thus agent orange. I was denied disability even though two cancer doctors said that benzene was as likely as not the cause of my mds. The denial was on technical grounds. My VSO sent the appeal to the administrative judge appeal. He thinks I have a strong case. I don’t think I will be alive in the 3 to 7 years such an appeal takes.

    Ray

    #44013

    Mark Rogers Mark
    Participant

    Ray,
    Thanks for the reply and input. I’m glad for all that you have taken up the fight. As soon as I get a testimonial letter from my hematologist I’ll push the claim forward, but, like you, I will likely not live long enough to see them adjudicate this to a postive outcome. I see my Doc tomorrow and hopefully he’ll have the letter ready. He as told me that he has several Vietnam Veterans as patients all with various forms of MDS.

    God Bless

    Mark

    #44187

    Meredith Smithson
    Participant

    Hello:
    My husband is a Vietnam Veteran with MDS, type RCMD, Diagnosed Jan 2018. Currently has severe neutropenia with WBCs 0.7-1.3 range, neutrophils 0.1. Platelets 50. RBCs are normal. No treatments. Awaiting results of 2nd CT scan to determine lymphadenopathy. I have heard that the incidence of MDS for Vietnam Vets is 778/100,000 vs. 3/100,000 for the general population. I don’t know if claims for veterans have gone anywhere. Does anyone know more?

    Thanks,
    Meredith S.

    #44192

    Mark Rogers Mark
    Participant

    Meredith:
    I’m sad for your husband but I have a similar blood profile myself. My WBC’s are labeled as ‘critical’ by the lab and Red cells are dropping too. Almost all the cells are abnormal. I am filing a claim with the VA when I can get well enough to go to the local VSO. I thank you for that stat you posted about the incidence of MDS in Vets as opposed to the gen pop. As you likely know there are several MDS Foundation centers around the US and hopefully they are trying new stuff to help. I live too far from one but will be seeing a Onclology/Hematology Dr in Sacramento in Nov. To answer your question: No I don’t think there’s any way to push the VA to take responsibility for this except to keep adding claims to the pile, which is what and why I’m doing it. God Bless you and your husband and I pray for us all…About all I know to do

    Mark R.

    #44198

    rar
    Participant

    Hi Meredith,

    I am interested in the 779/100,000 number. In the population in general MDS afflicts about 12,000 or a little over 3 per 100,000 as you stated. In the year 2016 there were about 500 transplants in the US or about 5%. These numbers are pretty consistent. There are 9.2 million Vietnam veterans. At 779/100,000 that amounts to 72,000 veterans with MDS. You would expect a fair number of these to go to a VA hospital for treatment. There are two VA hospitals doing SCT and in 2016 they did no MDS transplants. Where are all these veterans being treated? I am a veteran. I asked about the VA doing a transplant and was told that there is a waiting list so long that I would die before my number came up. I called the VA hospital and was told there was no list and they did few transplants. I had my transplant paid by medicare.

    Ray

    #44199

    Mark Rogers Mark
    Participant

    Ray,
    Thanks for posting. The problem is that the VA does not yet take responsibility for MDS in Vietnam Veterans..It’s just like everything else…we need to keep pounding them with number of us with this condition I am filing a claim but likely will not live to see the success we achieve. As far as SCT goes I am considered too old to be eligible for this treatment anyway. I think the age for which any medical facility will consider SCT is 65, or so I’ve heard…

    I’m not at all surprised that the VA hospitals will not treat MDS since it was ‘not their fault’ to start with, which, of cours is total BS…It’s an up hill fight

    Mark

    #44200

    rar
    Participant

    Hi Mark,

    I had my transplant at age 74. It is not unusual. I am 100% covered for any medical condition and drugs. Conditions do not need to be service connected. It doesn’t matter who’s is at fault. My drugs are about $13,000 per month.

    Ray

    #44201

    Mark Rogers Mark
    Participant

    Ray,
    Interesting…not what I had read about SCT/age limits… Was it a scary and or risky procedure ? I have an appt with UC Davis Oncology in November and will ask about this..

    #44202

    rar
    Participant

    Mark,

    Scary – no. Risky yes. 3 year survival rate for SCT is about 50%. 3 year survival for very high risk MDS is 4%. So far I have survived over 4 years. I went with the better odds. You have to be healthy enough to survive the rigors of SCT.

    Ray

    #44203

    Mark Rogers Mark
    Participant

    Thanks Ray
    I looked it up on Mayo Clinic and it told me a lot…survival rate would be about the same for me as if I didn’t have it…Side effects don’t look like fun either…Add to that, I’m not healthy enough to withstand it… I wish you well, my friend

    #44205

    rar
    Participant

    Hi Meredith,

    This morning I listened to a webinar on MDS and Agent Orange presented by Dr. Steenams, a leading expert. He said the the incidence of MDS among veterans and non veterans has no hard numbers but in his experience they are about the same. I am still curious where you found the 778 vs 3 number?

    Ray

    #44301

    Mark Rogers Mark
    Participant

    I filed my claim with the VA on Tuesday thru the local VSO..I know it will be a long, uphill ordeal and I likely won’t live to see the day the VA accepts responsibility, but at least when they do my wife will begin to get 50% of my benefits since I’m 100% but only for 3-4 years.. With all the people who have this from VN service and the incidence numbers its really sad and frustrating to have them in such denial.

    #44323

    Mark Rogers Mark
    Participant

    Just had another CBC drawn and my Hct is down to 27.7 from 31 last May and it’s been pretty steady until now.. Not sure when Doc will start Epogen but I’d like to know from others when they started… I also read that it can cause tumor growth…all we need is more cancer :(. Please chime in with your stories on Epogen or Procrit. I did read that success is limited and only works for a while on a different thread here.

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