Vietnam Vets With Cml

[TomLeo]

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.

[TomLeo]

I cannot get back to my original post at all any longer. I do not know if I did not ultimately meet the acceptance criteria of the moderators or what. This would be a useful site if anyone ever can use it. And YES, I HAVE READ THE CRITERIA FOR THIS WEBSITE. I KNOW THAT USE NEWCOMERS CANNOT DO ANYTHING UNTIL WE ARE APPROVED. WHETHER YOU WANT ME ON YOUR SITE OR NOT I THINK IT WOULD BE A GREAT SERVICE IF YOU WOULD ALLOW MY REFERENCES TO THE LEUKEMIA AND LYMPHOMA WEBSITE TO BE POSTED AS IT WILL HELP VETERANS WITH CML.

You do not need to remind me and post more references to the various info on how to use (or why you cannot use) this site. I am sure my disgust with the site is affecting my response with the moderators. You guys keep this site protected from us outsiders.

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.

• Check out our Home Page for articles that may answer your question
• VA Abbreviations and Terms Defined
• Frequently Asked Question
• Search for information on your question

Tbird (Webmaster HadIt.com Veteran to Veteran

[carlie]

Sorry that you feel chastised, that was not my intent, my intent was to assure

you knew the requirements of joining and posting.

It usually takes six or more posts before these restrictions are removed.

When you registered as a member, it was in the rules, incase you missed it.

Perhaps we got off on the wrong foot, I look forward to reading more on this important issue to veterans.

[TomLeo]

Fine, run your site how ever you chose to run it, it is after all, your site. I am only a Vietnam Veteran using the VA as his primary oncology treatment source due to the extremely high cost of medication for this disease. I have had a disability claim in for months and months with no response yet. I do all the research I can do on the disease as well as the VA process, both treatment and claims. If I sound less than enthused about the inability to be "approved", given the above, possibly you will understand. I am sure when I hit your quota, given I do not make any of the moderators too mad (and I DO appreciate the yeoman's work the moderators do!!!!) I look forward to using the forums, the blogs, the other features of your site that presently just show up to me as "you are unauthorized to use this feature". It appears, from my perspective as an outsider, to be a useful site. I hope to use it one day.

I cannot get back to my original post at all any longer. I do not know if I did not ultimately meet the acceptance criteria of the moderators or what. This would be a useful site if anyone ever can use it. And YES, I HAVE READ THE CRITERIA FOR THIS WEBSITE. I KNOW THAT USE NEWCOMERS CANNOT DO ANYTHING UNTIL WE ARE APPROVED. WHETHER YOU WANT ME ON YOUR SITE OR NOT I THINK IT WOULD BE A GREAT SERVICE IF YOU WOULD ALLOW MY REFERENCES TO THE LEUKEMIA AND LYMPHOMA WEBSITE TO BE POSTED AS IT WILL HELP VETERANS WITH CML.

You do not need to remind me and post more references to the various info on how to use (or why you cannot use) this site. I am sure my disgust with the site is affecting my response with the moderators. You guys keep this site protected from us outsiders.

[TomLeo]

By definition, CML is CHRONIC myelogenous leukemia or CHRONIC Myloid Leukemia (synonyms). ACUTE Myloid Leukemia (ACL) is the acute phase of the same disease. BLAST phase is used by the Social Security Admin in their determination process for disability which is a measure of the blast phase cells in the bone marrow. The differentiations may have had some meaning in the past, before the advent of the targeted cancer drugs (AML and CML was {were} the first cancer with a targeted treatment drug. The protein-tyrosine kinase inhibitor drugs, Gleevec being the first, in a way took away the meaning of the different measurement names (which mainly were measures of the number of leukemia cells in the bone marrow). I hope this gives you an idea what CML actually is. For more information you can go to the CML area of the Leukemia and Lymphoma website. This is, I think, pretty indicative of how little VA knows about the disease, too.

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.

[jbasser]

Hi Tomleo, welcome to Hadit.

You appear to be very well versed in CML and we appreciate your presence here.

In comparison, CML is not as popular of an issue as it is not as common as other AO issues like Diabetes, IHD or Prostate Cancer.

We can devote some time to this subject and I hope the membership will chime in.

I know this site can be frustrating at times, we are not well versed on the subject matter.

It will not take too long to make it through Hadit's initial setup and ranking process.

Again, welcome.

JBasser

[Berta]

Yes Tom is well versed in CML and I appreciate his concerns as to why the VA does not recognize this as an AO disability.

Tom- I have been involved in the Agent Orange issue since 1991.

If you and other CML veterans want to get this as an AO presumptive, you have some leg work to do-

Start talking to your Cpnngressman/woman- and then to any state rep or senator you have who sits on the House or Senate Veterans Affairs Committee to push for amendement to add CML to the AO list.

Then read over Every IOM report and try to get some contact going with them to see if IOM has any intentions of doing further research into the CML situation.

If I were doing this, I would focus in on asking why the IOM included Hairy Cell B and CLL but not CML in the regulations.

Additions to the AO presumptive list have never happened in a vacuum.The VA rests heavily on the Institute of Medicine.

They have another report regarding AO coming out this spring , as I have been told by someone who has met with them regarding another AO issue involving Blue Water Veterans.

Now might be the time to contact them and try to advance your situation on behalf of CML veterans.Send them your findings and research.Get commitments from other CML veterans that they will help in this effort.

I have pursued personal claims that were "impossible"- as my last 2003 AO claim was deemed by my former vet reps,and even a VA employee.

My FTCA case was deemed "impossible" by lawyers who would not help me.

An issue I had with VA months ago was treated as if that too had no valid basis.

I succeeded in all of above.My point to you is NOTHING is impossible with the VA.

BUT it all takes a lot of work.

Project 112 SHAD vets have gotten no where with VA because they never accumulated a data base of prevalent illnesses in SHAD vets to be able to make a valid attempt to get some disabilities as presumptive to SHAD.

You are gathering a data base of CML vets who all have (I assume) exposure to Agent Orange.

If you can get an Environmental Expert to support your belief that dioxin caused this disease-then you have a solid standing to begin the process of getting the AO regulations changed.

I certainly will read the info at the link to your site. I want every AO vet to be properly compensated and I do foresee more disabilities will go on the AO list in time-

yet time is what AO vets don't have.

The Agent Orange regulations control CML claims.But in the last 20 years those regulations have grown to include many many types of cancers (34 I believe) as well as many other disabilities.

You stated after one of my replies-

"This is, I think, pretty indicative of how little VA knows about the disease, too. "

I agree that they know very little and they need an education on CML.

I have been here at Hadit almost daily for about ten years and assure you that we have helped thousands and thousands of veterans.