Vietnam Vets With Cml Need To Get Together

[TomLeo]

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

[mozartplayer]

I too have questioned for a long time why CLL and HCL are on the presumptive list, but not CML. I was diagnosed with HCL in April 2007 after having been treated for prostate cancer in 2005 leaving me with moderate residuals. The HCL is still active, but chemo not yet recommended by the oncologist I see every 3 months. I filed for comp in August 2009 and was denied Feb. of this year because the VA could not find a record of my TDY from Okinawa to Tan Son Nhut in 1962, a TDY which was in connection with RF-101s flying classified photo recon sorties over Laos. However, the VA did award me a 10% rating for a neck injury for which I was treated many times during my 8 years in the Air Force and which led to severe cervical osteoarthritis. The only reason I got approved for the 10% is because I had copies of Air Force medical reports and lots of x-ray reports. I do plan to appeal the denial of the denial, but still have many months to do that. I will ask my oncologist if he knows how many of his CML patients were Vietnam vets, but he may not tell me for privacy reasons. I do believe my prostate cancer and HCL were associated with exposure to Agent Orange, not only in Vietnam, but possibly also during my 18 months at Kadena AFB, Okinawa 1961-1963 and possibly during a TDY to the Canal Zone in late 1963 where Agent Orange is believed by some to have been sprayed. I personally believe it's only a matter of time before CML is added to the presumptive list, but in the meantime, hundreds of vets could die from the disease. Fortunately, drugs such as Gleevec are keeping patients alive for prolonged periods of time. I spent over 35 years working for a Federal agency in a job that involved reading thousands of medical reports and medical histories and I do recall seeing a lot of reports related to Vietnam vets with a wide variety of cancers. I will check out the Facebook group on CML. There is also a new Facebook group having to do with Agent Orange in Panama. Perhaps the Facebook group on CML can lead to more research by the IOM on the subject. I admit I haven't yet taken the time to check to see if the IOM has done much research on CML. The privacy issues related to medical records makes it difficult to get accurate numbers. In any event, the issue should be pursued hard. I find it difficult to believe the VA added DM2, but not CML. I don't know if my prostate cancer and HCL was actually caused by exposure to Agent Orange, but I do know I spent time in four countries where Agent Orange was known to have been sprayed, the fourth one being a TDY to Thailand from Kadena. The odds of contracting both prostate cancer and HCL are pretty high, but I'm grateful it's HCL I have and not CML. HCL is incurable, but chemo is generally about 95% successful in full remission. I'll be probing for more information on the CML issues. I would advise all veterans with CML to file comp claims. The worst that can happen is to get denied, but it'll then become an official record should CML get added to the presumptive list.

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.