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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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.
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