MDS, Agent Orange and the VA

[bailie]

Triumphe64, thank you. The reading of Bill H.R. 640 is interesting. Twice it mentioned "no cure" for these diseases. I think that most consider that the stem cell transplant can be a cure. I was surprised that this was not mentioned (unless I missed it). The tone of the Bill seemed to indicate that there are many environmental factors that can cause "acquired bone marrow failure diseases", just as other cancers. I think they will find that there are hundreds of environmental causes that people are exposed to during their lifetime that can be a cause.

Many doctors at this time are reactive to the diseases, rather than being proactive to the causes. My doctors presented the opinion that if they knew the cause, it most likely would not change their approach to fight the diseases. It will be good to see if these studies are fruitful. Thank you.

[barbara a]

When there is "no cure", the medic as scientific communities do not spend $ on researching cause, it it w considered wasted monies. Therefore, the focus is on perfecting diagnosis methodologies and treatments. For us that must prove 'cause', this is FRUSTRATING AND diagnostic and treatment improvements are the future.

[Bob Macfarlane]

There is a study coming that is going to look into the relationship between Agent Orange and MDS.

Perhaps no relationship will be found but at least the experts will be the ones doing the research. At present you are at the mercy of bureaucrats with no medical experience, yet they make the decisions.

Between FY08 and FY10 2,857 Vietnam Era veterans with Hopkins Lymphoma, a presumptive disease, were treated by the VA and 14% died. During the same period the VA treated 4,031 for MDS and 30% died - - - throwing in AML 2,518 were treated with 45% dying.

Of course, if you are and apologist for the VA, you will not think those numbers mean anything.

[bailie]

Do you have a breakdown of the numbers for Vietnam Veterans as opposed to Vietnam Era Veterans? There is a very big difference. Is there any difference in the rates of disease for these two different groups? As you know, there were hundreds of thousands of "Vietnam era veterans" who were never in Vietnam nor possibly exposed to agent orange.

[Bob Macfarlane]

I asked and this is all the VA was able to give me. Naturally, you now know that the statistics are meaningless.

Since I am one of those few that the VA (BVA) declared to have gotten MDS through exposure in Vietnam, do you suppose I should tell them I disagree? I know you do.

I personally know the doctor's that are going to do the study - - - in fact, I expect to be a part of the study. Shall I put them in touch with you so that you can tell them not to waste their time?

[bailie]

That one statistic (Vietnam era outside of Vietnam vs. in country Vietnam veterans) would be more meaningful than anything else they could look at. I would be very surprised if I were told that the VA hasn't made that comparison already.

To decide whether or not Agent Orange can cause MDS or AML is "meaningless" unless the numbers are greater when compared to the control group of veterans not in Vietnam. It is well understood that Agent Orange is a carcinogen. The real question is whether the presumed exposure in Vietnam was the cause for the veterans who now have MDS/AML. And whether or not that exposure was the only exposure by the veterans to carcinogens during their lifetime.

Yes, you have my permission for these doctors get in touch with me.

[Bob Macfarlane]

How much does the VA pay you?

[rar]

There are 12,000 MDS diagnosis a year. With US population of 320,000,000 this amounts to about 38 patients per million. There are about 1,645 MDS transplants for 12,000 patients or about 14% of MDS patients in the US receive a transplant. Therefore there are 38 x .14 = 5 transplants per million US population.

The VA does a total of about 84 MDS transplants a year. There are 2 hospitals, Puget Sound did 28, TN. did 56. This is for all veterans. This means the VA did 84/21.8 million = 4 transplants per million veterans. Just slightly less than the general population.

Does agent orange cause MDS? There is little proof that it does. However it as likely as not that agent orange plays a role. The only chemical shown to play major role in primary MDS is benzene. Benzene containing solvents (including gasoline) were used to make agent orange easier to spray. There was also a small amount of dioxin in the herbicide as an unwanted containment.

Am I a shill for the VA? Consider they give me $917.13 a month. They also give me free the 19 drugs I take for GVHD which cost around $400 a month, free medical services, hearing aides, eye glasses, etc. You judge. No way am I going to tell them to stop. I am being treated fairly. I would gladly give them back all the comps if I could be cured of my disability. When I found that I had MDS I went to a VA oncologist. Bottom line, I had MDS, there is a long waiting list, I would be dead before my number came up. I called the hospital and was told there was no waiting list. All I needed was a referral from my VA oncologist. Catch 22.

I have done 6 clinical trials. I am willing to participate in a study.

The numbers are not guaranteed to be 100% accurate. I think the sources are pretty accurate. I could not find MDS rates among those deployed to Southeast Asia.

There are 21.8 million veterans of the U.S. armed forces as of 2014. There are 319 million Americans, according to the bureau.Nov 10, 2014

Vietnam War (1964-1975) Total U.S. Service members (Worldwide) 8,744,000, Living Veterans 7,391,000 85% of Vietnam veterans still living. Deployed to Southeast Asia 3,403,000 x .85 = 2,893,000 still alive.

Ray

references
http://bloodcell.transplant.hrsa.gov.../survival.aspx
https://bethematch.org/tcdirectory/search
http://www.va.gov/opa/publications/f...ricas_wars.pdf
http://www.usnews.com/news/blogs/dat...data-boot-camp

[triumphe64]

http://www.publichealth.va.gov/expos...x.asp#veterans

http://www.benefits.va.gov/compensat...mherbicide.asp

Why these diseases common to many and not MDS?

[Neil Cuadra]

Investigative reporting site ProPublica has a series of article about Agent Orange, including the new VA promise to study the effects of Agent Orange on the children of vets.

[Marrowforums]

Vietnam War-era veterans with MDS are needed for a research study.

See Research Study Seeking Vietnam War-Era Veterans with MDS for details and links.

[Bob Macfarlane]

This study, being done at Dana-Farber (Harvard), is looking for volunteers. Minor blood test (NO BMB) is the only boo-boo you will experience. Thank God for men like Dr. David Steensma for continuing to search for the truth.

[barbara a]

I have been researching the cause of MDS as related to AO for more then 20 years. My husbands original doc suggested I change my research approach and I did 20 months ago, it has helped!! There is No scientific/medical study that states a nexus. That's #1
#2 no one or group has reviewed ALL studies related to the topic including got groups
#3 In researching the toxicity of dioxins (TCDD), the effect it has on the micro BM niche environment, the proteins of blood stem cells and the antagonistic changes all that causes shows a relationship between AO and the changes MDS shows. I have cited 5 specific scientific studies, 2 using "human" cells in rats, that clearly demonstrate a "biologic plausibility" connection, demonstrate an"epitologic commonality" between AO, CLL AND MDS. Additionally, I have written to the authors of the studies who have provided statements that "it is as likely as not" the there is a shared relationship between AO AND MDS.
I Ave legal representation that hopefully we use this data in my appeal whenever that may be. If again I am refused due to no "scientific/medical studies" I will be crazy and continue my fight for every etc with MDS. My husband died at 52 after an 8 year battle. He fought harder against MDS then the Jet cong he would say..how sad.
So for those who research check out TCDD AND AhR interactio, Hematopoietic stem cells and AHR. BONE MARROW FAILURE AD DIOXINS.. When BVA decides on my claim I will let everyone know. My claim is in DC but no date yet. Thanks to Bob MacFarlane for his support, data and unseating help.

[bailie]

Barbara, I don't think there is any doubt that agent orange can cause blood disorders. The problem for the VA is that during a person's lifetime they are subjected to many, many chemicals that can cause blood disorders including smoking, exhaust and hundreds of agents containing benzene. Benzene is among the 20 most widely used chemicals in the United States. The difficulty about this whole situation of trying to pin it on military service is very difficult. In my situation I know that I was exposed to considerably more benzene after military service than during service. This has zero to do with support or not support of veterans.

[Fish]

Does anyone know how to contact Bob? (His previously published email is no longer valid) Or, if Bob cannot be contacted, does anyone have a copy of the CD which he refers to in previous post?

[Data]

Fish,
I have a copy of the CD. It is date May 6, 2015. E-mail me your snail mail address and I will send you a copy.

Data

[Bob Macfarlane]

It is AOL that is messing up with the email address. I have used AirAmrka@aol.com now for about 14 years.

Thanks for sending the CD.

[travelhuni]

Hi all, i've been reading through many (older) posts on AML / MDS and some of you have great evidence of a Nexus link. My stepdad is on Hospice dying of AML right now. Mom needs the VA to rate him at 100% so as to possibly get some benefits after he passes.

I've got the attention of both my state Senators and am assembling an evidence package for them to assist me in getting the VA denial, appealed.

Yes it's understandable there are many things that could have caused the AML, but why would it not be on the "known" list when DIABETES is???

Any help you can give is much appreciated. I have lots of the Citations already downloaded from past posts/years. Just looking for more recent info, something that maybe the senators can take to battle.

Thanks in advance...

[barbara a]

Ok. I have researched for 20 years watching the "development" of studies and different approaches. AND here is what I have most recently been advised :
It is not how many studies you cite it is how many testimonial documents you present on behalf of your case.
An appeal must address each notation the VA lists in their denial with a factual proof document best written by a medical/scientific professional. Has an independent doctor reviewed your Dad's records and cimmented? If not have that dine. If your father passes prior to an accepted settlement have your mother file a survivors claim immediately (within 30 days). Her claim is separate from your father's yet based upon his claim for disability so. She will continue to appeal his claim to satisfy hers.
I have the name of a legal firm who, if they accept your case, represent you and you win thear fee is 20%of what you receive in a lump sum.

I am on my 6th appeal over a 8 year oeriod. Write to me any time...be strong persistent if you believe AO was the majority cause of your Dad's AML

[Marrowforums]

Originally Posted by Marrowforums

Vietnam War-era veterans with MDS are needed for a research study.

Recruiting for the study is still ongoing, and the research team is looking for additional participants. Their goal is to study 100 to 120 MDS patients who were presumptively exposed to Agent Orange between 1962 and 1975.

By participating, you'll be helping other veterans and the MDS community, and you'll receive the study results.

Study participation is free and involves filling out a short online questionnaire and providing blood and saliva samples at a local medical facility. For the details, see Research Study Seeking Vietnam War-Era Veterans with MDS.

[bailie]

Thank you. They already have my vials and saliva. I hope they will be able to get information from this study. Maybe they will find that the cigarettes supplied with all of our meals were a cause greater than exposure to agent orange. I could never understand why they pushed smoking as much as they did in training as well as duty in Vietnam. I was glad I didn't use the products.

[vtjocely]

Bob- I tried sending you an email requesting your CD but it has come back as rejected due to only accepting addresses in your address book. How can I get a copy of your CD?

[Bob Macfarlane]

Send me a private message with your email address and I will answer back. Reply to that and we will be in business.

[travelhuni]

Hello all, and first of all a thank you to Bob Macfarlane for his continuing work in helping vets, us included, get information to continue this fight.

Bob has sent me lots of info that has helped! As would be expected, our first claim was denied since AML/MDS is not on the presumptive list.

Our VA Purple Heart rep has asked if we can gather more Nexus letters simply showing a DOCTOR or ONCOLOGISTS opinion that the cancer is "as likely as not" due to Agent Orange exposure.

I have one solid letter from dr Steensma as recommended by Bob M. but our rep says a few more would be helplful.

SO I'M ASKING FOR HELP WITH THE FOLLOWING
1. If you know of any additional Dr's that would write a letter in my dad's name , i can send them his Cytogenics report. (i already have one from Dr. Steensma), please send their names/contact info to me.

2. If you have your own Nexus letter you wouldn't mind sharing, that would be helpful and much appreciated!!! can send privately or i can share my email address with you.

Thanks in advance. Dad passed away this past Saturday Jan 14, at 65 years old. Mom needs some help from the VA to be able to make it.

April

[bailie]

I am very sorry for the loss of your father. These diseases seem to be so relentless. April, the problem for the VA is that it is known that agent orange can cause MDS/Leukemia, but it is extremely difficult to pin the cause to military service. Most people are exposed to the same cancer causing agents throughout their lives. I am part of a study at this time by Dr. Steensma to see if they can pin down agent orange as a source of these diseases. One problem is cigarettes were furnished with all of our meals in the field in Vietnam. Tobacco use is one of the known leading causes of these diseases. That is just one of the problems and why this is so difficult for the VA.