TomLeo

I received my denial last week. I have appt with my oncologist this afternoon (at VA). Have had contact with ExecDir of National CML Society, plan to work with him in finding medical experts to aid in establishing nexus for appeal. VFW Service Officer is not at all optimistic -- are any of them ever optimistic? Must be what they see all the time. Kind of like an ugly guy trying to pick up a woman at a bar -- eventually he expects rejection. Here is the Facebook page where I have links to VA appeal docs, other info that can help anyone with CML. I desperately need to find fellow CML sufferers. http://www.facebook....4598584147?ap=1 As an aside, the VSO was so negative about any claim I would have for my IPF (my other incurable disease -- Pulmonary Fibrosis) that he would not even take out a claim form. Flat told me that VA would say it was my smoking 25 years ago. Even my pulmonologists are not that negative. I had intended to volunteer to become a VSO, but not so sure. The negativism that becomes a part of that job worries me, with all the diseases I have I definitely do not need another negative in my life. Please, any CML survivors or NOK, come to my website. I even have TWO children of Vietnam Vet BOTH with CML. CML is NOT a hereditary cancer!! I have a NOK who died of CML who lived in Ohio, and the VSO she spoke to would not even help her with a claim saying the VA would deny it because he lived in Ohio, a FARM state!! First VA goes to no proof of environmental links (there are plenty -- when cited on appeals they are accepted); and then they go to other possible environmental factors. Talk about having it both ways!

We have a Facebook page, "Vietnam Vets with CML and their families". We have quite a bit of research and links on that page to help with your disability claim. We need more Vets, more participation, we ESPECIALLY need physicians who can assist in obtaining the much needed nexus for our claims and for our appeals. The Facebook page is getting attention, more than just about any other vet or cancer page, but we need more participation. At this point, I am the only administrator: everyone seems too busy to help. I could use someone willing to assist me in that regard. You will find links to successful and unsuccessful appeals, input from families (NOK) and their frustrations dealing with a VA system that refuses to give them any assistance because their father "lived in a farm state" (presumption is being his AML was caused by farm chemicals and herbicides); right next to a denied appeal due to "no connection proven of links to chemicals". Together we can get CML added to the presumptive list! But unless we have more people involved, every one of us who succeeds will have to find INDIVIDUAL medical support to prove exactly the same thing that has been proven previously. PLEASE, if you have CML/AML or if you know a Vet with CML/AML, go to this Facebook page and join!

We are making a push to get as many CML Vets together as possible. There are a lot of indicators that CML is much more prevalent among Vietnam Vets than the population in general, and we must make a concerted effort to have all the Leukemias on the presumptive list. As closely related as they are, it is really silly that CML is out there almost by itself as not included on the list. I have several of the appeals that have been approved; including for NOK after the veteran died. We need as many CML vets as possible together for this and make the push to find doctors who will state there is a link, congressmen pushing for addition to the list, etc. But it is numbers that does it. There is a Facebook group called "Vietnam Vets with CML and their families". You will find links to some of the VA appeals decisions, why some were granted and more denied. This is terribly important. My VA onc finally admitted to me that there are a LOT of Vietnam Vets with CML.Now that there are drugs that work for most of us to keep us alive, there will be more and more. VA had it good in the 1990s as the older VietVets started turning 50-60 -- they all died. Now we are hanging around and we have to make our voices heard. All those widows and NOK who were denied back then should be getting Nehmer letters; otherwise they should file. AND I am convinced that the CHILDREN of Vietnam Vets who have come down with CML have a claim as well. The Australian study that showed a positive link to children of Vietnam Vets was pressured and repudiated, but I STILL believe the original results were good. VA Claim for CML 060410.pdf

My VA Onc answered one of my questions by saying there are a lot of Vietnam Vets with CML. I kind of figured that since the blood tests I get are very specific tests for a certain protein that very few cancers look for, and two of the phlebotomists have told me that they draw blood in that particular color vial fairly often. It strikes me odd that so few CML vets have contacted me on this or the Leukemia and Lymphoma Society website. The only way we are going to make any progress is together.

Finally got a diagnosis for the persistent cough and shortness of breath that oncologists and GP and I were all convinced were side effects of CML/Gleevec. It is actually Pulmonary Fibrosis -- not a good prognosis with that. Here is the thing, there are other Vietnam Vets with CML who have similar, actually identical symptoms to what I have. You must be your own advocate. Also, those of us with CML who have been denied or will be denied now that the backlog of diabetes and hypertension claims allow the VA time to consider other (more fatal) illnesses, we must keep at this and join us in our fight. All those guys who filed claims and were denied in the 1990s who died MUST not have died in vain. Australia and New Zealand VA HAVE MADE CML PRESUMPTIVE TO AO! We also need to find out if the Gulf War I CML claims that were approved were for Vets who were ALSO Vietnam Vets. Remember, the Vietnam Vets truning 50-60 are most likely to develop CML, and SOME of the Gulf War I Vets were also Vietnam Vets. All who are in this category, please contact. Also look on the Leukemia & Lymphoma Society Community CML site. Since neither VA nor SocSec have done anything on my disability claims, I am losing my house. The next 3-4 weeks will be intensely involved in moving, but after that I am full time in this fight along with a couple of other Vets in same situation. We can use all the help we can get!

"within the next decade, 250,000 people will be living with CML in America, all of them on targeted therapy. Druker's drug will alter the national physiognomy of cancer, converting a once rare disease into a relatively common one."

EXERPT FROM EMPEROR OF ALL MALADIES -- This exerpt will give ONE reason the number of Vietnam Vets with CML is increasing. "A final note: I said CML was a "rare" disease, and that was true in the / era before Gleevec. The incidence of CML remains unchanged from the past: only a few thousand patients are diagnosed with this form of leukemia every year. But the prevalence of CML--the number of patients presently alive with the disease--has dramatically changed with the introduction of Gleevec. As of 2009, CML patients treated with Gleevec survive an average of thirty years after their diagnosis. Based on that survival figure, Hagop Kantarjian [of MD Anderson] estimates that within the next decade, 250,000 people will be living with CML in America, all of them on targeted therapy. Druker's drug will alter the national physiognomy of cancer, converting a once rare disease into a relatively common one. (Druker jokes that he has achieved the perfect inversion of the goals of cancer medicine: his drug has increased the prevalence of cancer in the world.) Given that most of our social networks typically extend to about one thousand individuals, each of us, on average, will know one person with this leukemia who is being kept alive by a targeted anticancer drug." What this means is that the earliest Vietnam Vets with CML -- When the VA began denying disability status -- in the 1990s, when the first of the Vietnam "boonie" vets started turning 50 -- and most of them died of the disease. Now we are alive, with a greatly reduced quality of life, and increasing in number. Same with the CHILDREN of Vietnam Vets who have developed CML.

That is what I was thinking Tom. Since it is pretty rare as this is a numbers game. For example Diabetes or Heart disease would net you more responses. Boy, are you correct on THAT one! Type II Diabetes and IHD are the TOP two LIFESTYLE diseases among men IN THE WORLD. That the VA would add them to the list of presumed Agent Orange diseases clearly indicates votes are a major part of the VA in its actions.

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.

It is very important that all Veterans with CML share our information. Doctor's statements, denial letters, appeals decisions. All the things we need. I am trying to act as a sort of organizer in these efforts at my blog on the CML site on the Leukemia and Lymphoma site. There is at least one Gulf War I Vet with CML who was approved for 100% DI due to chemical exposure. Gotta run, more later.

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.

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.

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

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.

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.