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HCL Mailbag
Visit the HCL Mailbag to submit a question to be answered by an expert in Hairy Cell Leukemia, or to read other questions that have been answered by an HCL expert. Your question(s) will be answered as soon as possible via email, and could be used to be part of the next HCL Mailbag!
The VA and HCL
I’m a Vietnam vet with HCL; I was diagnosed in 2008, was watched until 2009, treated with cladribine March 2009, and am now in remission. My purpose in writing this is to raise awareness among vets about assistance available from the Veterans Administration. The VA covers a number of diseases they have determined to be presumptive due to exposure to Agent Orange. In October of 2009, HCL was added to this list of presumptive diseases. If you have been diagnosed with HCL and are a Vietnam vet, I would urge you to file a claim with your local VA office.
More information can be found at the VA web site: http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=1796
Doug
Dear Doug: Thank you very
Dear Doug:
Thank you very much for sharing this information regarding the VA's decision relating hairy cell leukemia to exposure to agent orange. Your willingness to provide the reference may help other patients with this rare disease who may not have known that they are entitled to help from the Veternas Administration if they were exposed to this agent during the Vietnam War.
Sharing information between patients and their doctors is a major benefit from this website. We hope that there will be other patients who benefit from having an opportunity to learn more about their disease. This information may be helpful to patients, their families, and their doctors.
I am very glad that you are in remission.
The VA and HCL
I'm a Vietnam vet who was diagnosed and successfully treated for prostate cancer in 2005 although I do have some residual side effects. I was subsequently diagnosed with HCL in April 2007, but all indications were that I had it at the same time I had the prostate cancer. I've been seeing my oncologist every 3 to 4 months since Aprl 2007, but as yet, do not require chemo. When I read last year that the VA was adding HCL to the Agent Orange presumptive list, I filed a claim with the VA in August 2009 which is still pending, but getting close to a decision. I also suffered a major DVT in January 2006 which is not uncommon with some types of cancer. My doctor took me off the warfarin blood thinners in Feb. 2007, but I had a second DVT in April 2007 and have been taking the blood thinners every since. I do follow the NIH clinical trials involving cladribine and Rituxan. There are also at least two HCL patients in clinical trials who post to their online blogs about their treatments. I don't know how long I can go without chemo for the HCL, but I just had a total hip replacement seven weeks ago which so far has been successful despite needing 2 units of blood, not because of surgical blood loss, but because of low hemoglobin from the HCL. My CBC blood counts have all been out of range since at least the day I had the prostate radioactive seeding. They don't vary much, but they're not good. I will also require cataract surgeries in the future and possibly cervical spinal surgery, but overall, I don't feel all that bad. I'd rather have HCL than any of the other forms of leukemia.
Jim Corbett
VA and HCL
Jim, I certainly hope things are going well for you these days. I too have HCL and am have just received my 10th of 12 treatments of Pentastatin. So far, the docs say that all is going well and according to plan and that I can expect to be free of this stuff early next year.
On the VA subject - I filed a claim with the VA due to having both prostate cancer and HCL. At the time of the claim, I was ree from prostate cancer and was receiving no treatments. I was also not receiving anything at the time for the HCL. As a result, I was awarded 10% VA offset from my retired pay. I also applied and received CRSC in the same amount as my VA offset. Was wondering if you may have info on upping my VA offset & CRSC since I am now being treated for the HCL. I guess I could contact the VA but wanted some inside info if you may have it.
Stay well
Tony Cooper