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TomLeo

Vietnam Vets With Cml

Question

It is very important that Vets with CML (Chronic Myloid Leukemia aka Chronic Myelogenous Leukemia) share our status and information. This would be a logical site for that, if any of us can ever get to the approved stage where our posts show up timely, or show up at all. CML is a rare form of Leukemia, and not on the list of presumptive diseases for AO (yet). It is so rare that even a lot of the oncologists many of us see have never before treated a case of CML. Some CML patients drive 200 miles to see an oncologist who has some experience with CML. The biggest "norm" for P+ CML (Philadelphia gene positive -- it is a gene transport in the chromosome in the bone marrow) is MEN in their 50s and 60s. VA has been denying every case of CML starting in the 1990s (about the time the older Vietnam Vets who were boots on the ground would be turning 50-60). Most of those early claimants are now dead. The first effective treatment for CML started in 2002 (clinical trials the year before). Now we are into the 3rd Generation of targeting chemotherapy drugs. Still no cure, but we may be the first generation to die with CML rather than from CML.

All the VA denials and appeals denials have basically been due to a lack of medical testimony that CML is linked to AO. CML has been proven to have no hereditary link. So it must be caused by environmental factors, although there are some who put forth the thesis that it "just happens". There were two studies that showed a statistical link between Vietnam Veterans and CHILDREN with CML. In fact, I have been in contact with a sister AND brother with CML whose father was a Vietnam Vet. There have been numerous studies, including studies of identical twins proving NO hereditary link for CML -- yet the CHILDREN of Vietnam Vets seem to have a high incidence of CML. To me, this is all leading to the probability that AO exposure affected the chromosomes of the affected Veteran and was passed on to his children.

Further, there are to me a goodly number of Vietnam Vets I am running across on Leukemia forums that have CML. Think about it a moment, we have a hard time finding oncologists who have ever treated a CML patient, but we are not having a hard time finding each other. Does that make you think for a moment? What we must do is get together electronically to share information. The VA seems to be accepting a link for CML to benzene, and has approved at least one Gulf War vet with CML due to chemical exposure. Okay, lets carry out that thinking. AO, or TCDD, the primary component of AO, requires TWO benzene molecules to form. I am told by one of the Air Force guys on Ranch Hand that AO was mixed WITH benzene to keep the nozzles from clogging. And the potential for benzene exposure from all those diesel fuel cans burning human waste, the helicoptors and JP4, etc, etc. Point is, we must work extra hard because there are so (relatively) few of us. Rare disease, easier for VA to deny. But it is not as rare, in my opinion, among Vietnam Vets -- AND their children.

If this ever does get approved and posted, and you want to reply to this and you happen to be new to the site, please keep trying. I also have a BLOG on the CML forum site of the Leukemia and Lymphoma Society website. I also have several discussions on the CML forum on that site. If this site is nothing more than an information site, it will help a lot. But lets try using the CML site until we have more of us in the "approved" status.

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There has been limited discussion of CML at hadit:

Question=- do you know the outcome of the Hupp V Nickolson case as far as any DIC benefits go?

The case was based on CML causing the veteran's death due to AO exposure.

Part of the VCAA for all widow's claim was amended to include reference to Hupp-

The CAVC remanded to allow her to provide medical evidence of the nexus.This caused the addition of this case to become part of the VCAA letter for survivor's claims.

If a vet or widow /widower of vet can prove the veteran's CML was due to AO or jet fuel or any inservice cause- with supporting strong medical rationale from an expert in field of CML, they can potentially succeed on their claim on a direct SC basis.

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I have not read all of the IOM reports regarding research on link between Agent Orange and all types of leukemia, but I don't understand why CML has never been added to the presumptive list while B cell leukemias have. The hairy cell leukemia that I've had for over 4 years is very rare, but yet IOM established a link to Agent Orange for whatever reason. I've never understood how the VA could add Type 2 diabetes and prostate cancer to the list, but not CML and some other blood disorders. It's possible that I would have had prostate cancer and hairy cell leukemia had I never been in Vietnam, but the odds of having both at the same time are astronomical while having only prostate cancer is not uncommon among all men. There is much we don't know about the effects of Agent Orange decades later. In my own case, I believe it was Agent Purple that caused my multiple medical problems being how I was in Southeast Asia 1961-1963 before the tactical herbicide formula was revised to Agent Orange. I recall Agent Purple being so toxic it dissolved the rubber seals on the C-123 spray nozzles which were replaced with neoprene seals I believe in early 1962 after the beginning of Operation Ranch Hand. That was during a time when the Air Force was classifying almost everything Top Secret, some reports not declassified until recent years. Those reports can be found online.

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CML is considered "acute" whereas CLL and Hairy Cell B are considered as chronic and this is why VA rationale will not consider CML as presumptive.

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If this ever does get approved and posted, and you want to reply to this and you happen to be new to the site, please keep trying. I also have a BLOG on the CML forum site of the Leukemia and Lymphoma Society website. I also have several discussions on the CML forum on that site. If this site is nothing more than an information site, it will help a lot. But lets try using the CML site until we have more of us in the "approved" status.

TomLeo,

Thank you for bringing this information aboard in regards to Vietnam vets and CML.

On a different note:

This web site is much, much more than an "information site", as we do have over 7,000 members

and next month will make 14 years this site has been available to veterans and their families.

You did have two response posts to the only previous post you made when you joined on 28 Nov 2010,

and you never acknowledged them.

If you did not notice it when you joined, you more likely than not would have read the below and/or

received it in an email or PM.

Welcome Aboard -

Please Note: Your firsts posts on the board may be slightly delayed before they show up, as they are reviewed, this process does not take long and the review requirement will be removed usually by the 6th post, though we reserve the right to keep anyone on moderator preview. This process allows us to remove spam

and other junk posts before they hit the board. We want to keep the focus on VA Claims and this helps us do that.

I know you are anxious to jump into the forum, but these tips will help you get to it a lot faster.

Tbird (Webmaster HadIt.com Veteran to Veteran

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Now I cannot seem to get back into my original post to Vets with CML, only the moderator chastising me for making a comment about the approval process.

To any Vets with CML, please see my forum posts and blog on the Leukemia and Lymphoma Society community.

http://community.lls.org/thread/8555

This is a fine website. I get good information about the VA Claims process here. Most of the CML-specific comments by people who do not have CML have a lot of erroneous information about the disease, but that is pretty indicative I believe of the VA process and its reaction to the disease. I suppose I understand the approval process on this website,, and thank you Carlie for referring me to the things I had already read. I do understand how the management of this site chooses to regulate participation in the site. It is your site, you can do with it as you see fit. My only comment had to do with anyone new to the site, like myself, and how hard it is to use it effectively. If I ever make the grade and have whatever participation rights you ultimately give to regular people, I am sure I will spend more time here and become more familiar.

For those WITH CML, I strongly advise that we use the CML site on the LLS website to meet, share information, and gather our resources to work toward acceptance of our claims with the VA. I hope this helps any fellow CML Vets, especially Vietnam Vets.

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