Vietnam Vets With Cml

[TomLeo]

It is very important that Vets with CML (Chronic Myelogenous Leukemia; Chronic Myloid Leukemia) share our status and information. Please see my posts on the Leukemia and Lymphoma website:

http://community.lls.org/thread/8555

This would be a logical site since most of us gravitate here. It is the most useful site to get information about our disease. CML is so rare that most oncologists have never treated a case of CML. Some CML patients drive 200 miles or more to see an onc who has some experience with the disease. The primary "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. This disease used to be a death sentence. The first effective treatment started in 2002 (clinical trials before). Now we are in to the Third Generation of targeted Chemotherapy drugs. Still no cure, but we may be the first generation to die WITH CML and not FROM CML.

All the VA denials and appeals denials have basically been dure to a lack of medical testimony that CML is linked to AO (Agent Orange). We need to gather our resources and start obtaining objective data we can use to establish the link in the VA's view. It is my feeling that the presumptive acceptance of lifestyle diseases by the VA is a slap in the face of all of us with blood diseases and cancers that have not yet made that list.

[TomLeo]

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.

[carlie]

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.

TomLeo,

Try to keep posting the CML info under one topic that way

it's not spread out over so many topics. The vets will be able

to keep up with the Topic that way.