Myelodysplastic Syndrome or MDS Leukemia

I would like to get anyhting tha would help with my father's case.

I would like a copy of any documentation on your MDS Leukemia and Agent Orange. Also, have you checked out BVA Citation # 1342944 ? It ruled in favor of a Vietnam Veteran's widow. He died of complications from MDS/AML due to benzene, found in diesel fuel, which was often mixed with Agent Orange. Sincerely in Christ, George Theiss USMC Vietnam Veteran

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There is a case that was pending with the department of Veterans Affairs that rendered its decision on November 26, 2012. Josiah B. Venter was awarded benefits for MDSI/Acute Myeloid Leukemia. You may want to research this in regard to your situation. My husband has been diagnosed with MDS and worked as a military mechanic for 10 years. This disease can be caused by extensive exposure to benzene, pesticides, etc. I hope that you have received positive results by now.

I am a widow and am trying to benefits from the VA. My husband was in Vietnam and died of MDS. Do you have any research I can use to send with my paperwork to the VA?

my, husband has or had mds and now he is dying of cancer .he was in korea .he has been turn down twice by va.It hurts when va makes you feel like your husband is not worth what the army promise him. My husband name is Jerold please help us.thank you

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VA diagnostic code 7725 is now assigned for MDS.

As a VN War vet I was already 80% VA service-connected disabled for gunshot and frag wounds.  At an annual VA physical in 2000 I was diagnosed with Anemia; asking the VA doc what that meant he said, "... nothing to worry about, you'll just feel more tired than usual."

In 2005 turning age 60, as a National Guard retiree I became eligible for Tricare For Life which gave me access to civilian medical care.  In the run-up to shoulder surgery by a civilian doc (also in 2005), blood work again revealed Anemia.  Within a couple of months I was dealing with a Hematologist/Oncologist and two bone marrow biopsies diagnosed Refractory Anemia with Ringed Sideroblasts (RARS), one of the subtypes of Myelodysplastic Syndrome (MDS).  Showing this doc my previous VA blood work he opined I probably had MDS in 2000.

In 2010 there was no VA diagnostic code for MDS.  Since part of my MDS diagnosis included "Refractory Anemia" but there was VA diagnostic code (DC) 7700 for Anemia, I filed the claim under it.  As medical evidence for the probable relationship between MDS and TCDD (carcinogenic dioxin present in AO) exposure my doc cited the 1976 Seveso, Italy chemical plant explosion.  "Long term studies of those accident victims showed increased Myeloid Leukemia most notable after a latency in excess of 15 years."

MDS can also progress to Acute Myeloid Leukemia (AML).    

My doc also stated,"... the data gives considerable weight to the supposition that MDS/AML is probably related to the Vietnam exposure to the Agent Orange military herbicide."  And although VA Board of Appeals decisions are not precedent-setting, I also cited a number of them in which DIC was awarded to widows of VN War vets who died from MDS and/or AML based on AO exposure.  It seems those cases of MDS began getting diagnosed in the latter 90's further supporting a very long latency period.

Within a few months, as expected VA rejected my Anemia claim because it didn't occur within a year of discharge.  In February 2011 I filed a Letter of Disagreement and chose the Decision Review Officer (DRO) process.  In December 2012 and still no word from VA, I inquired.  A short time later VA notified me that my appeal was lost and to resubmit it, which I did a few days later.

Nearly two years later in September 2014 and still no decision, I inquired again.  A week or so later a VA rep called me saying that the MDS claim evidence I submitted was missing and to resubmit it, which I did.

In October 2014 I was awarded 100% service-connected disability for MDS due to AO exposure.  The VA award letter stated that since MDS is not one of the AO presumptive cancers the award was not on that basis.  Instead it was because of the medical evidence from my doc and that I served in-country and was a ground combat vet hence exposed to AO. 

Because VA still didn't have a DC for MDS, I was assigned the most analogous one which was 7703 - Leukemia.  The complete DC assigned me was 7799 - 7703; apparently the first four digits 7799 is a "catchall" prefix for illnesses or injuries for which VA has no specific DC.

In November 2015 while at an annual physical with my VA prime care doc, she told me VA now has a DC for MDS which is 7725.  I'm guessing that was done primarily because of the Camp Lejeune, NC situation as opposed to AO in VN War vets.  The following is a URL on a December 2015 VA news release about the Camp Lejeune illnesses which includes MDS:

http://www.va.gov/opa/pressrel/pressrelease.cfm?id=2743

RE treatment I've had and the 100% service connection, since around 2007 I've been giving myself weekly injections of Aranesp to boost red blood cell production.  When that was no longer helping, in 2011 I tried Revlimid chemo in a clinical trial but I was allergic to it resulting in a brief bout with Stevens-Johnson Syndrome, really bad stuff.  Around June 2014 I began chemo with Vidaza and am still on it with modest but less than expected improvement.

At the below URL is an August 2015 VA proposal in the Federal Register for additional VA diagnostic codes and disability ratings for the Hematologic and Lymphatic systems.  If you'll search for "Myelodysplastic Syndromes" you'll see that DC is 7725 and that section explains the three levels of MDS disability awards based on MDS type and treatment.

https://www.federalregister.gov/articles/2015/08/06/2015-19197/schedule-for-rating-disabilities-the-hematologic-and-lymphatic-systems

Hope this helps someone,

Strawboss

I don't see your email. I am in this fight with the VA too. Please send any documentation that would be helpful in my MDS case.

yes my husband died from mds and served in the army and over that war thru agent orange out of the helicopter and shot it out of a tank...he had jungle rot when he came out of the service. we were married 40 years. he died after fighting the disease 13 years. he was 65 when he died.

I am a veteran and exposed to agent orange. Took Chemo for five years 5 days a month for 5 long years. from 2010-2015.Have MDS. Had a complete bone marrow transplant in March 2015. Have been fighting with VA longer than 8 years. No results. I still go to hospital every two weeks for my count check.. Since transplant I have had back surgery and a spot on my head cut out. Thank God it wasn't cancerous. Also my Doctors have written letters to no avail. I keep praying.

I would love to talk to you. I have been trying since 2010 and have had no luck at all. I have MDS and on March 18, 2015 I had a complete bone marrow transplant. I am not a well man.The VA has given me the same old story for so many years. My name is Jackie R. Baker. Thanks

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HIM BOB. EDALGER60@AOL. PLS EMAIL YOU RESULTS. JUST DIAGNOSED. THANKS

I'm the widow of a Vietnam Veteran who died in 2008 from AML. He applied in January 2008, shortly after diagnosis. I have a video hearing on Tuesday, March 7. Could you please send me your information ASAP? 

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I too have been turned down twice any information u supplye would be greatly appreciated. 

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Go to Marrow Forums and look me up. My name is Bob Macfarlane. I cannot give you my email address but you will find it there.

My husband also came down with Myelodysplastic Syndrome. He was exposed to Agent Orange.
Troop on the ground 1967.
He past away after 8 months of all kinds of treatments. Nothing worked. He was 69yrs.
The VA is asking me for scientific proof. OMG. He went to their hospital. They have all the records.
My request is on hold @ the VA. Jeanie