23 replies to this topic

[TomL]

It seems strange that VA does not have CML on the list of Agent Orange diseases inasmuch as there seems to be evidence that CHILDREN of Viet Vets have higher incidence of CML. Any Viet Vets had disability approved for CML??

[TomM]

I applied for VA disability after my diagnosis (2004), knowing that it would be rejected because CML is not on the list of conditions presumed to be caused by Agent Orange. I felt it was important to get a claim on record in case anything changes later. CLL has been on the list for a long time, but not CML. Since then, the VA has added other B-Cell chronic leukemias to the list (hairy cell leukemia and prolymphocytic leukemia), but not CML. I was in Vietnam 69-70 with Marine Corps.

Related question: I still use health insurance (and get my Gleevec) through my private health insurance at work. Does anyone have experience with being treated for CML and getting Gleevec through the VA? Any differences with what the standard practices seem to be in private sector? I'm nearing retirement and hope that VA may be an option.

[TomL]

I obtain my Gleevec through the VA, it works pretty well IF you have them mail it. You will need to establish your VA Health account, which means having a primary care doctor at VA, then that doctor will have to refer you to a VA Oncologist. For a while I had the VA oncologist co-manage with my civilian oncologist, but after many difficulties with the CIVILIAN doctor, I switched to having the VA as my primary oncologist. The VA oncologist will have to write the prescription for you Gleevec, but it is not a problem. The only problem is that the entire process took about five months from start to finish. I am still waiting for my disability claim. Just because CML has not made it on to the "approved" list of Agent Orange related diseases does NOT mean your disability claim will be refused. VFW, American Legion, DAV, all have offices in the VA office to assist with claims.

[TomL]

Have you made an appointment with the Agent Orange Registry through the VA? It is VERY important that you do that process. It is not terribly time consuming and THAT is how diseases get ON the "approved" list of Agent Orange related diseases. CML is a pretty rare form of leukemia, so until enough of us get the information into that Agent Orange Registry, it will not make it to the list. Did you know that diabetes made the list of Agent Orange related diseases? If my CML claim is refused, I plan to start over-eating.

[TomM]

I had an Agent Orange physical with VA about 25 years ago and receive VA Agent Orange bulletins, but have not done anything specifically with Agent Orange since my CML diagnosis. I do get an annual  VA physical to stay active in the VA system so that I can use it if I need it. My disability claim for CML was denied, as expected. I will check further into the the Agent Orange Registry as it relates to my CML. Thanks.

[jandk]

yes for many years exposure to carcinogens. Get sprycel from va and must see a va oncologist annually but most definetely see private onc regularly. The VA is not close and care is not the best.

[TomL]

I am completely enrolled with VA, including Oncologist and Pharmacy for my Gleevec, AND I have completed the Agent Orange Registry. I have applied for my disability, claim is in. The question is, has anyone actually been approved for disability for CML? I have had responses from one person who was denied, I want to know if anyone has been approved.

[Berkalvee]

Tom, I am a child of a Vietnam Vet with CML (dx'd at 30 in 2007) and my older half-brother (dx'd at 26 in 1995) died from CML in 1996.  I believe that my dad has brought it up with the VA people here in Albuquerque but I haven't heard much since then.  I have asked on here several times about any other decendents of Vietnam Vets that believe that they may have gotten CML from paternal Agent Orange exposure, but I haven't heard from anybody else on the matter.  Any info you have or obtain would be of great interest to me.  Write me back if you would like to chat more about this.  Considering that to the best of my knowledge, my brother and myself are the only siblings within similar ages to have been dx'd with CML, I would love to know if there is a real genetic link to AO that was passed down from our father, especially considering that I have a little brother that is getting close to 30.  Berk

[TomL]

I am extremely interested in your situation. I do believe that AO is causal in CML AND I believe there is a definite link to CML for offspring of AO Vets. There was a study in Australia that established a link, then that study was later discounted. I have a son who has estranged himself from me who is now 40. This is of much interest to me and I definitely want to stay in contact with you. My VA disability claim has now been in the hands of VA for months with no response either favorable or unfavorable. Have you made a claim? What did you mean when you said your Dad "brought it up" with the VA?

[JohnE]

TomM,

I read your post and I am a Vietnam vet from 1966-68. I was in the US Navy Blue-water. I was diagnosed with CML in 2000 and have been fighting it for the last 10 years. I now have an attorney advocate looking into my case. They have informed me that there has been one vet in either 98 or 99 who was awarded benefits for CML. I do not know the man's name, but he has since passed away. I know that I am just one of many Vietnam vets of different branches of the service who has CML. We all not to keep on pressing the VA to put the CML on the list. I would like to hear from anyone who has CML. Once again, the VA is just hoping we will go away.

[Trey]

The rationale used by the VA for not providing benefits for CML is that some other leukemias have proven cause and effect with Agent Orange, benzene, etc, but CML does not have that proof.  The VA says that Agent Orange exposure is related to Chronic Lymphocytic Leukemia, Hairy Cell Leukemia, and some B-Cell Leukemias, so benefits are provided for those specific types for exposure to Agent Orange.  Here are some references on the issue:

The VA views the Agent Orange issue as "Inadequate/Insufficient Evidence to Determine Whether an Association Exists" for the other forms of leukemia:

http://www.publichea...etter_jul03.pdf

(See page 3: "Category 3" discussion)

http://www.workworld...ompensation.htm

The following report discusses leukemia in the children of veterans:

http://www.iom.edu/R...m-Veterans.aspx

[TomL]

John,

We need to have a site where we can all meet and compare notes. I had the discussion with the Doctor who did my exam for the Agent Orange Registry about how the exposure to Agent Orange actually took place (mostly drinking water from streams and collected from rain in the jungle, in my case), and how CML is such a rare form of cancer that a link could be pretty easily found if there were even more than a handfull of us. Assuming you are interested in finding a way to "assemble", what are your suggestions. How do you know there are a lot of us?? I have been searching since diagnosed Sep 2009, and keep losing track of the people without getting their names and addresses. Tom, Cave Creek, AZ. 

[TomL]

I am familiar with those citations, and a few others. I am of the opinion that CML is such a rare form of cancer in the general population, that proving a link should not be all that difficult if in fact there are as many veterans with it as I am being led to believe. While the doctor who did my Agent Orange Registry exam was careful not to give anything that could have been remotely interpretted as an opinion, she did seem to agree with most of my opinions on how we actually came in contact and how a cancer with such an low incidence in the general population should have a presumtive link with a relatively few associations. 

[Marnie]

Hi, Tom. . .

I have a friend being treated at the VA hospital, not for CML, but for Multiple Myeloma.  I think that a link between MM and Agent Orange has been proven.  Not sure about CML.  Unfortunately, he's relapsed and is undergoing a second stem cell transplant.  Not looking good for him right now.

Marnie

[TomL]

There is a site http://www.hadit.com...act=Reg&CODE=00 that appears to be a good site for veterans seeking information, assistance, etc for disability claims. Unfortunately, it does not seem to allow new members to post comments or start threads. It looks like it might be a good place to find vets and children of vets, but if no one other than the original members can post anything it is pretty much useless other than as an information source.

[TomL]

There also does not seem to be any way to contact the administrators of the site. Seems very odd. 

[TomL]

Berk, Have you applied at the VA? I DO believe there is a real link for CHILDREN of Vietnam Vets exposed to AO. Can you provide me any particulars of your father's service? Can you put me in contact with him? My personal email address is snman47@hotmail.com. I live in Phoenix, I went to high school and UNM in Albuquerque. Is your father registered with the VA? You should be able to make a claim based on your father's service. It may not be approved at this point, but it is critically important that these claims be made so that when a link is firmly established you WILL be approved. PLEASE staty in contact with me. 

[TomL]

There is another Gulf War vet with CML who was approved for VA disability based on chemical exposure. I am still trying to get good contact with him, but your attorney advocate should know about that case. Please stay in touch and let's keep each other posted. 

[jandk]

yes however I had 10 plus years active military service an 19 in the guard with numerous gulf war deployments. Same job throughout career involving extensive solvent exposure including benzene. Lost military career due to CML. Did a sollid year of medical research regarding CML, leukemia in general and exposure to carcinogens,.  You need to prove to the VA what carcinogens you were exposed,, for what duration, how exposed (dermal or inhaled) and show the link between your military service and your disease. Review articles on PUB MED, NIH,EPA-search CML and every chemical you were exposed to=provide evidence to the VA. Go to VA and search all CML cases.

[TomL]

Would it be possible for you to provide me a copy of your Decision Letter approving benefits for your CML? I am trying to build a case for me and the other Vietnam Vets with CML. As you know, it is a rare form of Leukemia, and there is a large number of Vietnam denials by VA starting in the 1990s, about the time the older guys in the early days of AO spraying would be turning 50-60. I would really appreciate your help. So many of the other CML Vets that did not serve in Vietnam seem somehow upset with me for trying to establish a link, which I do not understand. Thank you for any help you can provide. Tom Leonard