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work + disability

jane99
Posts: 15
Joined: Jul 2009

Hello,

I had a nephrectomy for rcc last June, was stage 1. Six months later at my follow up ct, it was determined that I had more cancer and
am now a stage 4. I am due to have surgery later this month for removal of lymph nodes and possible dissection of the vena cava.
Then I will go on sutent.I work full time and my employer of course wants to know if I will be coming back to work. I know I
will qualify for ssa disabiliy, which won't be very much money plus there is the two year waiting period for medicare. I am 61 and
feel that it might be better if I tried to work only part-time. I asked my doctor if he thought I would be able to work,and
he said it would depend on how I recover from the surgery. There are just so many unknowns. Cobra insurance is expensive and
I understand sutent is pricey. I called my insurance plan and they wouldn't tell me how much it cost over the phone. I guess my
question is what others in my situation have done. How long do you wait before going the disability route? Can the side effects
of sutent be managed well enough to allow work? Thank you for your input.

Jane

bigneil
Posts: 6
Joined: Nov 2009

I had my left kidney removed 4 years ago, along with part of my right lung. Every procedure and test/meds, you name it was done by the VA. There is no way I can work now. I have chemo every Monday (Torisel MTOR inhibitor) and at least two other appointments at the VA for Mental Health, primary care, dietician etc. My opinion is not to try to go to fast. I tend to overwork myself and am scolded by my oncologist for such. I am 55 and try to keep a positive attitude as it will work in your favor. I hope that you are able to survive without too much pain.
Neil

kartsa
Posts: 1
Joined: Jun 2009

Hey, how long have you used TORISEL, and whether it has been a lot of side effects. Sorry about the poor English. I myself live in Finland and I spent 15 months SUTENT and should be planned to start treatment with TORISEL second-line treatment. Enlarged lymph nodes, not the disease elsewhere. SUTENT is not really a side effect. I wonder how to be TORISEL.
Good luck and the forces of Kartsa

pattymel
Posts: 18
Joined: Apr 2010

My husband is also Stage IV RCC. He got on disability and then we applied for Medicaid, which in our state pays all but $3 of the sutent. Sutent is about $10,000 per month, so I suggest you get on disability and fight to get on Medicaid. The side effects that my husband has experienced, I don't believe would have allowed him to work. If you get the mouth sores, they are very painful, and my husband gets very chronic diarrhea from it. I also don't think a work environment is the best place to be because of germs. with your immune system so depleted you are susceptible to so many things, i believe it is safer to be in a controlled environment. When my husband was first diagnosed he had just gotten laid off, we declined filing for unemployment benefits because we knew that would disqualify us for Medicaid. In the state of CO they require income reported from the previous three months when you apply, so we did without alot of things to get to where we could qualify. My husband recovered from the surgery great, and would have been able to work after that, but i really don't believe he could work now that he is on Sutent. If you have any questions let me know. It's hard to travel down this road alone but together we can do anything.

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