MDS, Agent Orange and the VA

[bailie]

No, I have never said "you are only interested in telling everyone "why it isn't associated." It may, or may not be "associated". I am suggesting that your statement that a doctor has to say, "in my medical opinion nothing other than Agent Orange could have caused the veteran's MDS or AML or both" is very difficult considering all of the exposures that most veterans have had during their lives for the 45 years after Vietnam, especially those who smoked during their lives. That is one of the reasons why one of the first questions that I am asked with this disease (MDS) is, "have you ever smoked?"

I agree if a person/vet were directly exposed to Agent Orange, they would/should have their situation considered.

[Bob Macfarlane]

For those that are actually interested.

VA presumes that Veterans were exposed to Agent Orange or other herbicides if they served:

1. In Vietnam anytime between January 9, 1962 and May 7, 1975, including brief visits ashore or service aboard a ship that operated on the inland waterways of Vietnam
   
2. In or near the Korean demilitarized zone anytime between April 1, 1968 and August 31, 1971

To say that there are no "experts" is to say that every doctor that has ever written a Nexus letter is a liar.

Neil how to I stop seeing that clowns comments? Do I just have to dropout of the forum?

[bailie]

Again, you are suggesting things I did not say. I have never said "there are no "experts" ...". This is a discussion worthy of having without emotion nor misquotes. Thank you for your opinion and service.

[triumphe64]

My friend gets benefits for his diabetes from his Nam service.

It just seems like there is a big lobbying group for that and some other illnesses.

[Bob Macfarlane]

Diabetes is a "presumptive" disease - - - meaning the relationship to it and Agent Orange have been established. I also receive compensation for diabetes and complications from diabetes.

I've been an individual that has been fighting, at my own expense, to get MDS and AML to be recognized as presumptive. Vietnam veterans are 14,000% more likely to have MDS/AML than those that did not serve in 'Nam. That number was computed from a FOIA request I made in 2010 and directly from the Veterans' Administration numbers.

Between FY08-FY10 there were almost 7,000 Vietnam "ERA" veterans being treated within the VA healthcare system. I am sure there were some number treated outside of the VA.

If in a three year period there were almost 7,000 being treated and since 1992 there have only been 202 BVA decisions related to MDS/AML, what happened with the rest?

I filed another FOIA request at each region asking for statistics on 'Nam "ERA" vet's claim activity for the diseases and claim outcome. The VA must have realized I was closing in on the truth; to a region I was stonewalled in violation of Federal law.

Given that data, I most likely would have seen that MDS/AML are being treated as presumptive at the regions. Those that have been denied are just the unlucky few. In fact, I personally know/knew of a number of veterans that received 100% for MDS without a fight.

There have been some stupid enough to dispute that by saying the veterans were just denied and never filed a NOD. Denied for a deadly cancer/leukemia and just went away. Sure thing, when pigs fly.

[Thomas Hawkinson]

I served with a squadron, VQ-1 (U.S. Navy) flying out of Danang, S. Vietnam, 1968 - 1969. I was exposed to Agent Orange during that time. We flew in EC-121's, (Super Constellations) during that time.

Detachment Bravo was the identifier of our area of the airbase. We were housed in barracks, non-airconditioned, and the exposure level was high due to the chemical spraying that took place in our region.

I was diagnosed with MDS by an Oncologist at Bay Pines VA September, 2013. I decided to get a second opinion from the civilian side using another Oncologist that performed a bone marrow biopsy at St Joseph's Hospital in Tampa Florida.

The biopsy confirmed that I definitely have MDS. The VA doctor completed a NEXUS form stating "50/50" that I contracted this from Agent Orange. My civilian Oncologist presented a Harvard paper that supported the same conclusion.

I filed my claim September, 2013 and was denied, September, 2014. The reason given was "Unable to provide proof of my time in Danang, S. Vietnam.

My squadron was and still is classified top secret and I was unable to provide proof of my time in-country. I contracted an attorney who helped me to re-open my claim and we submitted "buddy letters" testifying to my time in Danang, along with a letter from my civilian oncologist outlining my life expectancy.

The VA has re-opened my file effective December, 2014. We are now in waiting, once again.

My former squadron has been of no help, up to this point.

I will continue to post as more details become available. My desire is to help others who may be going through a similar situation.

[bailie]

Why don't you go through Medicare for your treatment of MDS rather than the VA.

Do you have any orders from your Vietnam service? I have orders for every unit I was with in Vietnam that lists all of the other people who received the same orders. All of this information is readily available from General Services Administration, National Personnel Records Center, 9700 Page Blvd., St. Louis, Missouri 63132. All of my records were declassified many years ago.

[Bob Macfarlane]

The care you will receive from the VA is second to none. Our medical care is great.

Don't listen to anyone telling you to use Medicare. Go back through that persons other responses and you will find that Marrow Forums is his entire life. He has made comments on just about every forum there is.

Buddy letters should serve you well at the region. It is a miracle that you got a VA doctor to actually opine that your exposure to AO is 50/50 cause of your MDS.

[Data]

Originally Posted by Bob Macfarlane

The care you will receive from the VA is second to none. Our medical care is great.

Don't listen to anyone telling you to use Medicare. Go back through that persons other responses and you will find that Marrow Forums is his entire life. He has made comments on just about every forum there is.

Buddy letters should serve you well at the region. It is a miracle that you got a VA doctor to actually opine that your exposure to AO is 50/50 cause of your MDS.

I agree with Bob. I have gotten excellent care for several problems at the VA including MDS. If you treat the folks at the VA with some respect the will in turn go out of their way to help you.

Data

[rar]

While I have gotten good care from the VA my experience with MDS was less than satisfactory. I had MDS RAEB2 and went to the VA for an opinion. The doctor agreed with the MDS and told me the waiting list for transplants is so long that I would be dead before my number comes up. It is strange that no mention of this visit showed up on my record at my healthy vet. I hope you get better care.

Ray

[Data]

Originally Posted by rar

While I have gotten good care from the VA my experience with MDS was less than satisfactory. I had MDS RAEB2 and went to the VA for an opinion. The doctor agreed with the MDS and told me the waiting list for transplants is so long that I would be dead before my number comes up. It is strange that no mention of this visit showed up on my record at my healthy vet. I hope you get better care.

Ray

Ray,
I am sorry you didn't have a better experience. I had been seeing a civilian hematologist and after many tests and visits she said "It looks like you have aplastic anemia but you should get a second opinion". I did just that. The VA sent me to the VA Hospital in Gainesville, FL. I did some research and found out some of the doctors at that hospital also work at the University of Florida Hospital - Gainesville (formerly Shands Hospital). I picked one that was board certified in hematology, oncology, and internal medicine and asked to be seen by her. I am totally satisfied with her care.

Hope you do well.

Data

[bailie]

Data, have they mentioned a SCT with your VA? I needed a SCT within months of diagnosis and I don't think it would have been available with the VA. We were looking for a donor within a month of my diagnosis.

[Thomas Hawkinson]

I requested and received my personnel files from St. Louis and there are no records that show my time in Vietnam. Others from my squadron are having the same issues. We have yet to be de-classified.

My DD-214 shows my ribbons and air medal from Vietnam, unfortunately it is not the proof they need. I even provided my flight log book, that was treated the same way.

[Data]

Originally Posted by bailie

Data, have they mentioned a SCT with your VA? I needed a SCT within months of diagnosis and I don't think it would have been available with the VA. We were looking for a donor within a month of my diagnosis.

Bailie,
We did discuss SCT during shortly after I was diagnosed. Unfortunately I am a little older and have some other issues that would make a SCT a risky venture but the option was there. It was more of my decision not to pursue that treatment option.

Data

[Bob Macfarlane]

If you have a claim pending, remember it is not going to be good enough to prove that Agent Orange caused your disease. Your regional office, like mine did, will rate you as if you're just anemic.

That is the decision that I await from the BVA. Our argument was that it should be rated as leukemia and not anemia. We believe we presented irrefutable proof that MDS is MUCH closer to leukemia than anemia. That is as always available if you would like a copy of the CD.

And as always, if you offer to pay for it, you cannot have it!

[barbara a]

HELLO FRIENDS!
It has been a while since I have written- 2 surgeries and a broken foot some family issues... I am sure you all know how that goes!
Once again my claim for survivor's benefits on behalf of my husband have been denied: not on the list, bone cancers not covered... I was already to call it a day when the local VA Service Rep who has been guiding/helping me for 4 years encouraged me not to. So, I have put in another appeal and will go to the Fed level and have requested a hearing. I have no doctor, expert, scientist or atty to go with me. I only have Bob's case and info, my research and David's life history.David's treating physicians wrote their letters of "as likely as not" as the VA requested and personally believe in the nexus between MDS and AO but do not have 1 specific study which 100% proves their opinions-so the VA disregarded them. The docs will not write and "argument" response stating that it won't make any difference....what can I say?

I am hanging on, will continue to do my best and present my claim. As always all and any support is appreciated.
Bob keep me posted especially of your decision I probably have another 2 years ahead of me. If your case is settled in your favor, will that raise MDS to the second (of the 4 levels) to be considered for further research to be included on the presumptive illness list?
God Speed everyone,,,barb

[Bob Macfarlane]

Hi Barb,

Coming soon is a scientific study, well funded and lead by top MDS experts in this nation, that could lead the government to make MDS / AML presumptive. As always, I tell you, you give up and they win.

Sincerely,

Bob

[barbara a]

How did you get a dVA doc to write a "50-50" letter? i AM AMAZED AT THAT AFTER THE HOOPS OF FIRE I HAVE GONE THRU
THANKX BARBARA

[barbara a]

Keep that encouragement comin'!!!
My denial included that IF MDS is a bone cancer the Sect of VA has ruled out all bone cancers!...I wanted to scream!!! Also the denial clearly supports the overall BIG problem of complete inadequate research to prove a claim either way. It certainly feels like a "too bad, so what" response from the VA. The overall number of MDS patients is increasing in North America which should support a catalyst for more focused research studies on cause. With more patients the cost of care increases; generally this is an "old man's illness" AND people are living longer...simple equation.

I have used several of your research articles, professionals' statement and comments for reference in my appeal. I am not disputing the bone cancer/blood disorder/bone marrow injury consequence. I am addressing the claim of the unknown, lack of understanding and knowing on the part of all parties to actually prove there is not a relationship between AO and MDS.
There are studies which you have cited and facts i have discovered that supports the possibility..the 'probable value' of that information is being weighed by people with lack of full knowledge: why? BECAUSE THE RESEARCH IS MINIMAL IF ANY. That is what I discovered in my research to 'prove' a nexus, the big problem is inadequate research in the causes and that is the gap to be addressed. Then a better certainty could honestly be decided.

Keep me posted and I will do the same. I hope you are doing well. Foot healed, fell again and sprained knee with small frax of patella...balance just doesn't get better!
barbara

[Bob Macfarlane]

The problem is that MDS is not bone cancer but a cancer that affects the bone marrow - - - leaving out MDS because it is a "bone cancer" means they bloody well need to leave out MM which is a presumptive disease!

Multiple myeloma is a cancer that affects a type of white blood cell called a plasma cell. Plasma cells produce antibodies to help fight infection and disease. In multiple myeloma, cancerous plasma cells (myeloma cells) are found in the bone marrow, the spongy tissue inside bones that manufactures blood cells. When myeloma cells accumulate in the bones, they can crowd out normal cells and invade bone tissue, damaging and weakening bones.

[mdhihwjv]

Both benzene (contained in AO) and solvents (mixed with AO) were found at Camp Lejeune and in the Gulf War reports, and both of these studies accepted a link to MDS.

[Bob Macfarlane]

I have a "widow" in Alaska that we were fighting for her DIC on the AO / MDS connection. When the LeJeune report came out she got her DIC.

Benzene is most likely the connection of us being sick but the Institute of Medicine has denied benzene in AO being responsible. The IOM had a hearing and the veteran that went before them about that connection presented a really weak case. IOM said by the time it hit the ground the benzene would be gone - - - no one mentioned that we weren't dropping it from 10,000 feet but at tree-top.

[barbara a]

If any on the BVA reads anything on this forum??? It may be an eye opener....
just a thought

Blood cells "called to action" leave the organ -bone marrow- and transform into the correct cells as needed by the body at the exact point of differentiation, the marrow injury may cause too many lymph cells to begin to develop, the cloning of this mistakes repeats and CLL forms the bone marrow injury was caused by AO as accepted by the BVA

At this same junction in blood development an injury to the same bone marrow can result in inadequate red/white/platlet cells being produced and "empty" cells being produced instead, cloning of the ineffective cells continues and MDS develops....AO the cause to the bone marrow injury?? unknown due to lack of studies specifically related to the cause. However, there are beginning to have studies relating the similarities to CLL and MDS development, the malignancy of each, the clononing and they are each bllod cancers. Marrow is not bone, it is an organ directly related to our blood "system" orthopedics do not treat marrow injuries, hematologists/oncologists do....
I'm just saying.....
Have a great MEMORIAL DAY WEEKEND EVERYONE
barb

[Keri Anne]

Hello to all! I registered with this forum shortly after my husband passed. Then decided to read all 4000 pages of his medical documentations. I became so overwhelmed that I finally reached out to an attorney. He too has been dragging his feet for a year now. I was notified a few weeks ago that I need to pay for a medical expert who may or may not agree that my husbands chemical exposure in Vietnam is related to his "MDS".

All I can say is DON'T give up. I put it aside for awhile to gather my bearings and try to figure out who I am in this new world without my husband. I found out that it is a life long process discovering who you are. Tackling the day to day combat of what life throws at you. All I know is I am here for a purpose. Not my purpose but God's purpose. So, together we will become an army of warriors. IF anyone hears or discovers anything please keep me in the loop and I will do the same.

I too, have knowledge of a research that will soon be underway if not already. The study will take 12-18 months. I have offered my free services even if it is to make coffee for the research team. I know Mr. Bob MacFarlane is a plethora of information. Huge shout out to you Mr. Bob for all your knowledge and timeless hours of research to help us all.

Take Care All! Look forward to seeing your posts.

[barbara a]

glad you have returned to the forum it does wonders for me just knowing there are other people familiar with my frustrations, experiences and so forth
I am garthering my research notes and papers to organize my reply to my last denial. i have read and re read David's info so much and find I missed some small detail that gives me an "ah-ha" moment after 13 years I don't relive his 8 years of illness just some moments and remember how courageous he was in his battle.....ok done.

stay in touch ask and share there is always some to respond. I hope you are recovering well and haven't been washed away!

By the way how is your atty presenting your case? Hang in there with the rest of us