Anyone have Cutaneous T Cell Lymphoma?

Welcome, @dgbucher. To help you connect with other members living with cutaneous T-cell lymphoma, like @innocentlee @dws1968 @bradders @somde @shari715 @charlenekeogh and more, I moved your question to this existing discussion:

- Anyone have Cutaneous T Cell Lymphoma?
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
I look forward to getting to know more about you. What symptoms led to your diagnosis? Have you talked about a treatment plan with your care team yet? How are you doing?

Does anyone here have cutaneous t-cell lymphoma? I was just diagnosed with it last week.

@shari715 thank you for your response. We are based in the Uk and to be honest the NHS is not much better.The waiting list seems endless.

My son has been suffering for over 15 months now and every time he had this skin issue he was sent away with antibiotics, now as it’s an ongoing issue they are looking into it in a bit more dept, however I think if we knew for sure what we were dealing it would allow us to plan, at the minute it just seems to be a waiting game and also the actual diagnosis seems to take forever. My sons GP thinks he has this condition but obviously it’s the biopsy that will confirm, although reading some of the stories on this forum it seems people are having to have several biopsies for confirmed diagnosis?? I think this is worrying.

Thank you for your kind words.

Take Care.💕

So I had a biopsy on a specific lesion which I could not see as it was on the back of my leg. I waited 10 days for the results. The dermatologist sent it out again to confirm. I think when I looked at the report 4 pathologist had seen the specimen. I then had to wait for a PET scan. Then about a week for the PET scan results. I first saw the dermatologist in February but only had a definitive answer at the beginning of May. This is not right but that is medicine in the US in 2023. Good luck with your son.

@tataddyp , my son is awaiting a biopsy and struggling with getting a true diagnosis.

He has similar symptoms, he gets cold hands, chattering teeth, sweats and a full on weakness and looses all his strength. Writhing a few hours of these symptoms he then gets a red patch that covers the whole side of one buttocks cheek , he then gets hard tumours under the skin in one side of the buttocks.. the doctors keep prescribing antibiotics whilst waiting for a biopsy.

We spoke to our doctor as like you it’s a waiting game, she is adamant that he has Mycosis fungoides ( T-cell lymphoma. My son is only 31 so it’s a big worry as when we have researched the condition there doesn’t seem to be any real fix or cure??? It’s strange as it comes out every 3 months then goes away, but always the same place and the same symptoms.

Please can you tell me how long you had to wait for diagnosis.. and if it was the biopsy that confirmed the diagnosis as my son has had so many blood tests but nothing shows up abnormal in these???

Desperately trying veto understand this condition and if there are quicker ways for a full diagnosis.

Thanks for reading .

I have a slightly different cell type of CTCL. Also most people at diagnosis are not stage 1A. My blood work was normal as was the PET scan. I am also seen frequently by a dermatologists and oncologist. Who knows the easy treatment may end soon. Hopefully not.

My understanding is that CTCL is a blood disorder that is typically treated on the inside with drugs & ECP. Light treatment & creams may be treating the symptoms and providing relief but is not necessarily treatment ing the condition.
My T-cell Lymphoma, subtype Sezary Syndrome, is currently being treated with the drugs Methotrexate &=Brentuximab but soon to be starting on Mogamulizumab as I am not getting relief from the symptoms as yet. Through ECP we have been able to get my WBC back to normal & drugs are maintaining
It may not be life threatening but it sure is live changing. Stay strong

I have only had this diagnosis for 8 months. In the next month I will see my dermatologist and oncologist again. I am only using the light box three to four times a week. I am not sure where you would put the cream as I don’t have visible lesions. The stage of the disease is very important and provides a course of treatment. I remain as of now Stage 1A. The oncologist indicated when the disease progresses there are multiple chemo drugs available. He did not say anything about a cream. I think you will have more information soon. Please keep in touch.

@shari715 do you use a chemo cream with your light box? My son is seeing his Dermatologist and oncologist on Nov 7 and I want to ask about some treatments. As I said in my initial post, we have pretty much have been left in the dark about this rare lymphoma. I am really hoping he will get staged at this visit and given a treatment plan.
How does everyone feel about Clinical Studies? My son is 33 and nothing has been talked about in going forward But, the oncologist called and wanted to put him in a clinical study that was just approved in June. There are not enough people with CTCL/MF in our area to have completed this study. They need 20 people to sign up for it and they don't have 20.

Hi @buddoc, welcome. How long has it been since you stopped UVB light treatments? Have you talked with the dermatologist in the meantime? Might you be able to start light treatments again?