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]

Berta,

I thank you so much for your replay and for the wonderful work you do for Veterans. I have copied your response and plan on making it the outline for my efforts to have CML addressed by the VA. I know I have gotten frustrated with the Hadit site, I devote what time I have to this fight and feel my time has to be spent as effectively as possible. On the very day my frustrations of not being accepted for membership yet on Hadit were reaching a boiling point, I discover that two Russian prostitutes have become "members" of one of the CML pages on Facebook. So there you go, I suppose I should just sit back and play the game. Tom

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.

[Tbird]

Tom -

There's no game here. The example of two russian women of ill repute on your facebook page are one of the many reasons we have the rules we do. I hear your anger and frustration at the VA, but Tom we are not your enemy.

Tbird

Berta,

I thank you so much for your replay and for the wonderful work you do for Veterans. I have copied your response and plan on making it the outline for my efforts to have CML addressed by the VA. I know I have gotten frustrated with the Hadit site, I devote what time I have to this fight and feel my time has to be spent as effectively as possible. On the very day my frustrations of not being accepted for membership yet on Hadit were reaching a boiling point, I discover that two Russian prostitutes have become "members" of one of the CML pages on Facebook. So there you go, I suppose I should just sit back and play the game. Tom

[TomLeo]

Thanx J, that is the exact point. CML is not a common issue, in fact it is a very rare form of Leukemia. The fact that it is rare means we practically never find an oncologist who has another CML patient or who has treated the disease before. We pretty much have to learn about the disease on our own and try as best we can to monitor our own treatment. That is why I am trying to direct other Vets with CML to the CML site on the Leukemia and Lymphoma website. That has been the most valuable source of information AND SUPPORT I have found since dx (diagnosis).

I never meant to cause problems when I siad Hadit will be a great information site. The members here have a plethora of knowledge about the VA process and system (such as it is). I greatly appreciate most of the people in the VA who have helped me, the people here on Hadit who have taken their time to give me guidance (and ignore as best they can my frustration), and mostly I recognize the yeoman's work all the moderators and members here perform for the overal good of Veterans. But the simple fact of the matter is that your site does not need or want, I don't think, the day-to-day problem sharing we CML survivors get involved in. Gosh knows our poor wives and family have enough to put up with, so we find places to go and share our difficulties AND the ways some of us find to cope with the problems. I will try and keep Hadit just for what it is intended for -- help with our quest for recognition by VA.

Thank you all! Sorry I was in such a foul mood yesterday. I was in from changing the plugs, distributor cap, and rotor on my truck. What was a simple one hour task two years ago had me dripping with perspiration, totally out of breath, frustrated, and in a bad mood. See, that is what I am talking about.

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

[jbasser]

Tom what were your initial symptoms? if you don't mind telling them?

J

[TomLeo]

I don't mind at all. As anyone who knows me knows, I will bend someone's ear off talking about CML. I did not really recognize the early symptoms. The big ones were fatigue and night sweats. But I live in Phoenix, and it was in the summer time, and anyone familiar with summer in Phoenix knows neither fatigue nor sweating are a big deal. God was shining on me because my annual physical exam was in August and that is when the blook disorder first showed up. My family doctor assumed it was something wrong with the equipment at the lab, he had never seen white cell counts that high. When the second blood test came back a week later it was 33% HIGHER. That is when the doctor knew I better get to a hemotologist and/or oncologist fast.

Tom what were your initial symptoms? if you don't mind telling them?

J

[TomLeo]

I went to the VA for my usual PCR blood test which in my case looks for DNA called BCR/ABL, the marker for the P+ CML in the blood (Philadelphia positive gene). The tech has to take a special colored vial for that test -- actually the color is for all PCR tests, there are PCR (DNA) tests for numerous conditions. I said ":I bet you don't use many of those". She said, "No, not many, but you are the second one today. Now I know the PCR test is used for other conditions, including HIV. But I am getting very little action here from Vets with CML. I am getting a lot more action on the Leukemia site. Please, if you have CML, contact me through this site. We can get the VA to accept our condition, we just have to get together and work this thing to completion.