CLL Stage 0 and VA Disability - CLL Support Assoc...

CLL Support Association
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CLL Stage 0 and VA Disability

Happy to be aboard. I was diagnosed in 2016 with CLL Stage 0. Vietnam vet with agent orange exposure so I filed a VA claim in November but now I'm hearing that Stage 0 doesn't qualify. Anyone out there who was either granted benefits or denied with Stage 0?

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Welcome! I cannot remember this topic being addressed. So I am just guessing. At stage 0, you are not disabled?? Maybe?? My husband was on Okinawa where they brought all the jeeps that had been damaged to be refurbished. He was wondering if his CLL could have been from the fumes from that. I don’t think his would stand up for disability since he didn’t work on the jeeps. He was on the baseball team. I kid you not. He also spent some time making sure the Nike missile defense system was calibrated correctly.

So glad you made it through the war!

Linda

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Linda,

Thanks for your reply.

I may not be disabled, but agent orange gave me a fatal disease and I would not feel any guilt taking $. I know there are many Vets who are truly deserving of benefits and I love and wish the best for them.

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You are truly deserving. They knew that was bad stuff. You do what you need to. Nothing more shocking than putting a war away and 30 years later finding its still trying to kill you. I'm a vet, and my exposures probably won't be listed for a awhile. But I'm pretty sure I'm on this website because of them.

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I am so so very sorry you got exposed to that agent orange. Or that it was even invented at all. Yes, you vets deserve!!! My brother was a disabled (neck injury, terrible pain but didn’t look sick). He lived with us his last 4 years and he had VA disability. Sure didn’t pay for much. Best Wishes!!

Linda

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I am a US Army Vietnam veteran, was exposed to Agent Orange. I was diagnosed with CLL in May 2016 at Stage 0. I went to the local Veteran's Coordinator in the town I live in who helped me with the disability paperwork which is long, is very specific. I had also signed up for the Agent Orange Registry at the closest VA Hospital where they did a whole battery of blood tests. I was approved for 100% VA disability in September 2016, about 3 months after I filed. With 100% disability I get full VA medical benefits and a significant monthly disability pension check. I am still Stage 0, active and feeling well. I see a Hem/Onc MD at the VA in Jamaica Plain, MA. My main advice is to get someone with experience to help you fill out the disability form. I went to my town's coordinator; there also should be a coordinator at most VA facilities.

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rivinus, Thanks for your reply. Its encouraging. My claim is at 4 months and hopefully I'll hear something soon.

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I am a Viet Nam era veteran that was accepted into the VA Healthcare system during the ten year open window ‘97-‘07 that allowed those with honorable discharges to join even without conditions related to service. I don’t know how it works now but “we” overburdened the system, I think that’s why they closed the door. In any event when I was diagnosed with CLL in ‘08 the first question asked was if I was exposed to Agent Orange. Though I was assigned to an ammunition supply depot I was not exposed; my CLL came from another source in all probability.

Have you tried to get complete care from the VA? It used to be a four sheet application that was straight to the point, no need for any outside help. But like I said that application was ten-twenty years ago. I maintain my Medicare and there is some cost sharing, I think, though I have no paperwork to determine to what extent. Another great benefit is I don’t have to deal with the ACA and I only visit my Medicare/Kaiser primary care doctor twice a year; they watch other things than my CLL though my primary care physician has five other patients with CLL.

I think the VA Healthcare is the best there is as do the vast majority of those being served. The VA has ranked number one in patient satisfaction across America for over twenty years and counting.

Please help stop the Republicans from privatizing VA Healthcare with a voucher system.

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Helicpters that dumped agent orage were carriers. If you were on a helicopter that brought you to nam- which had **ever** dumped- then yeah- you were exposed. 0 people who went to nam were not exposed.

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I am also an Agent Orange survivor. I am at 100 per cent disability, but I have multiple issues. Coronary artery disease (7 stents), atrial fibrillation, hypothyroidism and, yes, CLL stage 0.

I agree with mrivinus that you should get help. My first application was denied that I did myself. My appeal was done for me by a VFW coordinator who knew the right words to use. The only saving grace is when they do make a positive decision, you are paid retroactively from when you first filed in a lump sum.

Whatever happens, don’t quit appealing until you are at 100 per cent.

Thanks for serving, brother.

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Are you rated at 100% permanent disability or temporary? They rated my Stage 3 SLL 100% temporary even though there is no cure for the cancer. I have had chemo once, part of my colon removed because of it and have an immune system that doesn't do much of anything.

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Hello stage 0 CLL,

I'm a Viet Nam in-country vet and I knew I was exposed as we were told to clear areas while the Air force sprayed then we went back into these areas. Also, the Navy surveyed vets that had been exposed a few years after the war ended (I was still on active duty) and filed with the VA at that time saying I was exposed.

At the time, I discounted the exposure and much later was diagnosed with CLL in stage 1 and going into 2 with enlarged spleen and swollen lymph nodes with a high WBC from the blood panels. This caused me to be extremely tired and other related effects.

My primary care doc saw the counts going up over and period of time and finally referred me to an oncologist whereupon they did tests and scans and diagnosed.

First, let me say "DO NOT" let anyone dissuade you from claiming for disability or appeal. I'm now in a CLL support group with some people in "watch and wait" stage 0 category.

I have gone through first treatments that helped a little but not enough. I was fortunate to have outstanding oncologist's and cancer center not far from me and was treated with a new drug that is helping me. CLL can be and is very nasty stuff. Don't be discouraged and press on.

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Halldp,

Which drug was used for your first treatment? How did it help? Where is your Cancer Center and did VA Health pay for the treatments?

Thank you for your Help!

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First I took infusions of Rituximab. This did reduce some of the spleen and lymph nodes, but still had the same issues. I took this treatment from my local Oncologist/Hemotolgist. Then I went to UCSD Moores Cancer Center in La Jolla in San Diego with a CLL specialist doctor and went on a regimen of Inbrutinib (Imbruvica) 420MG daily. My Medicare and TRICARE for life (military) is paying for my treatments. I do pay a small co-pay.

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Forgot to mention that with CLL my immune system is significantly compromised. Having the compromised immune system is not fun. Among many things I come down with, I just saw the Derm Doc freezing and cutting off pre-cancer spots, squamous and basal cancer cells. I see this Derm doc every quarter and sometimes more frequent.

It's true that I would have this stuff anyhow but, the CLL immune system compromised brings many of these things to surface that would not appear if you did not have CLL.

Insofar, as colds, flu and all the other stuff your exposed to living a normal life has changed for me having learned my lessons the hard way. I've had to change my life style and be very careful.

Like I said in the previous "reply" CLL is nasty stuff. Make sure you have a good medical team; Oncologist, Primary Care, Dermatologist, Urologist and other specialties.

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CFR 39 Chapter 4 clearly states that any veteran with the active disease or in treatment is rated at 100%. I asked the VSO for their interpretation and they agreed it is still 100% even at stage 0..

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