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Anyone have Cutaneous T Cell Lymphoma?

Blood Cancers & Disorders | Last Active: 2 days ago | Replies (171)
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@kbirt

While I was still able to drive, I was being treated by a dermatologist and receiving light therapy treatment. Although it did help somewhat, I had to quit when I could no longer trust my vision and ability to drive. Although my dermatologist misdiagnosed me three times before another biopsy said it was sub-cutaneous T Cell Lymphoma. She did try to get an in-home light box for me, but SS would not pay for it. Due to my whole-body condition, I require the full enclosed light box.
So far, I find that although you can live with this condition, it is far from pleasant. I am very intolerant of cold weather as it sets pins and fiery needles sensation in my arms and legs. I am pretty much a recluse all winter and only venture out when temperatures rise above 70. (Sorry for the long note. I guess I suffer from boredom and loneliness too.)

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Replies to "While I was still able to drive, I was being treated by a dermatologist and receiving..."
Lori, Volunteer Mentor | @loribmt | Feb 9 3:03pm

Hi @kbirt, now that you’re part of our Connect family, I hope you won’t feel quite so lonely. There’s always someone around for a good conversation. ☺️

It’s really a shame you weren’t able to get a light box so that you can have treatments at home. I know getting around is difficult since you can’t drive anymore. I had a couple thoughts on that…
The American Cancer Society has Road to Recovery, which is a free ride service for cancer patients. I wonder if this is something that might work for you so that you can continue treatments on a routine basis. Here’s the link to their page online.

https://www.cancer.org/support-programs-and-services/road-to-recovery.html

Also, most cities have Uber or Lyft driver services. These are reasonably priced services that can do anything from delivering groceries to taking people to appointments, shopping, airport transportation, etc. It’s pretty easy to use. It does require an app to be on your phone but scheduling is really simple.
Would this be something you could manage?

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shari715 | @shari715 | Feb 9 6:08pm

I am so sorry. Getting the light treatment at home was a major difference and I was lucky because I drove the insurance company crazy until they agreed to pay. I as also fortunate in my diagnosis as my dermatologist diagnosed it when I basically had few symptoms just a suspicious lesion in my leg. Where do you live? Are there transportation services? Can someone drive you? What is the oncologist saying? No worries about long posts. Loneliness is terrible so feel free to reach out.

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