Connect
Anyone have Cutaneous T Cell Lymphoma?
Does anyone in the group have Cutaneous T Cell Lymphoma? I am waiting for an appointment with my oncologist (follow up for breast cancer) and am at possible risk for this cancer. I'd like to hear from anyone who has experienced these symptoms, how they got their diagnosis and what treatments they have or are having. Thank you.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Ask about radiation.
Good to know. I am hoping to avoid chemo. But it is not likely. My dermatologist says the lights should keep the disease at bay but oncologist says he will need to prescribe chemo at some point.
I’m up to 80% of it (Beleeodaq is the brand name I believe-can’t remember the proper spelling!)-it still sends me to “outer space” a bit and a little nausea but I’m able to drive home and go to work next day. Skin seems to be responding so another 3 months! Wheee! Thanks for asking!
-
Like -
Helpful -
Hug
2 Reactions@scoeyjr, how is the new chemo regimen working for you?
I am sorry. I thought I had replied. I do have a light box in my house. It is from a company called National Biological. It is a Phototherapy device with Narrowband UVB lamps. Phone 216-831-0600 or 1-800-338-5045. The staff and the owner are extremely helpful and pleasant. My insurance company would not initially pay for it but in the end after multiple calls by myself and the company agreed to pay for most of it. It is a pleasure doing it in my house. I was only diagnosed at the beginning of the year but so far no new lesions. Good luck. Let me know if you need more information
-
Like -
Helpful -
Hug
1 ReactionSorry, there must be some mistake, @somde. My comment shows that I was commenting in reply to @shari715, who posted that she owns a home phototherapy light box which she had ordered from that company. I have not seen a reply from her yet.
Thanks!
-
Like -
Helpful -
Hug
2 ReactionsI am aware how fortunate I was to be diagnosed Stage 1. I think it is worthwhile for the general public to be aware of misdiagnosis of skin conditions. I believe the light therapy may be able to keep me at Stage 1. Chemo, radiation are just not fun but it is amazing if you beat it.
God bless you! You have been through so much!
My sister had 6 radiation treatments and it seems to have worked. Scares the heck out of you! Thanks for sharing. Be well and take care of yourself! Debby
Received diagnosis in January this year after being improperly diagnosed as having psoriasis then being told I was allergic to medication I was taking! Stage 2b, received 6 doses of Adcetris from February-June which cleared -up my open wounds, stopped my horrendous lymphoma itching and stopped the major leaking (lymphoma sweating). I’m on a new chemo to clear up the skin-it covers my torso and my back still is majorly discolored BUT I am better than 6 months ago! It just takes time and I am a bad case so don’t judge yourself by me! Just be patient and follow your doctor’s orders-Pet scans have been negative so no cancer inside, just in my T cells. Be well!