Rare Disease Day Cutaneous T-Cell Lymphoma Facebook Live

In honor of rare disease day, the Lymphoma Research Foundation and Cutaneous Lymphoma Foundation hosted an hour-long live stream on Facebook with lymphoma expert Dr. Seminario-Vidal, and lymphoma patient Shelia, to discuss the diagnosis and treatment of cutaneous T-cell lymphoma (CTCL), research coming down the pike, as well as a look into the patient experience.
The Lymphoma Research Foundation is the nation's largest non-profit organization devoted to funding innovative research and providing people with lymphoma and healthcare professionals with up-to-date information about this type of cancer.
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[@bernadetteohalloran7663]

Hello l was diagnosed with tctl in late 2011. I had 25 doses of full body radiation. Intron A injections for 3 yrs and finally went into remission...lt was great to hear Sheila's story and listening to the doctor's.. Thankyou for your information.

[@meenachoudhary7119]

Hy please suggest the treatment of mycosis fungoides

[@meenachoudhary7119]

N now you are fine?

[@bernadetteohalloran7663]

I was treated with Radiation therapy and lntron A injections..l went into remission after 3/ a half years . I was covered in ulcers with mycosis fungoids...very painful and took months and months to heal.. My hair never grew back because of the ulcers with mycosis fungoids on my scalp....Been a very hard fight for the past 10 + year's.Hoping this helps..And l know how much people suffer with uncontrollable itch from TCL.lymphoma...lts a horrible experience.

[@meenachoudhary7119]

After radiation therapy mycosis fungoides never came back?

[@meenachoudhary7119]

And I heard radiation therapy increase tha second cancer risk... it's true

[@michaelh5055]

I am her because I just got off the phone with my wife. Her mom suddenly passed away October of last year. My wife is in the final week of packing her moms place to be sold and it's emotional for her. I have been helping, but couldn't today. My wife got a call from her dad that her grandma has lymphoma. It's progressed enough that even with chemotherapy and radiation, she has 2-5 months to live.

[@sayuriisme9728]

Very informative. The presenter asked excellent questions

[@kristle_virgo-empathic4683]

It took my 2 years. I was misdiagnosed for having Eczema/psoriasis, and they had me on several types of cream. It's been 20 years and I had total body radiation in 2020 because I had tumors here and there. However, for me now here in 2024 and I'm 47 Im still struggling in stage 1B. I have a combination of treatments clobetasol Propionate, ValchIor, and phototherapy. Now they want to do Bexarotene and Im scared due to the side effects. I want to be able to tell my story like this lady. How can I do so?

[@dianataylordeguerrero3888]

A wonderful interview and I pray Sheila is still doing well.

[@Raising-Zaiby-Baby]

My son had Lymph nodes and had some cells growing in his lymph nodes, also removed one of his lymph-node. How do I bring right people to see him and diagnose. His life isn’t returning back to life and seems like we aren’t able get anyone to look into it!

[@ferbek1981]

thank you, very important lessen Igot

[@Raising-Zaiby-Baby]

What are the signs through current and existing tests that can bring some indications?

[@kevanhubbard9673]

Hard to say how rare Mycosis Fungoides and other CTCL's are because a lot of people with it at it's less advanced level will have been misdiagnosed,no fault of the medical profession as it's very difficult to diagnose,with ezecma and psoriasis and it's only when it makes the jump from 2a to 2b they get a nasty surprise as to what it actually is.This happened to me leading to an amputation.They say that Mycosis Fungoides only progresses to the more aggressive form,2b to 4b, in about 30 percent of cases.Plus you get a number of other CTCL's related to Mycosis Fungoides like PCTL NOS which are even more unpleasant!

[@meenachoudhary7119]

Hy please suggest the treatment of mycosis fungoides

[@kevanhubbard9673]

@@meenachoudhary7119 You need to see a doctor as Mycosis Fungoides is a serious disease and not something that you can threat yourself!

[@teddyjackson1902]

I think the problem (?) is a lot of people don’t progress and so it’s in effect no different from having mild eczema, dermatitis or psoriasis. Median survival rate for people diagnosed with T1 is 35 years and the age of diagnosis is typically in the 50s. Doing the math they have a normal lifespan and die from something else.

[@kevanhubbard9673]

Correct. with 1a life expectancy is pretty much the normal one but there's a significant drop between 1a and 1b(2a is very similar to 1b) and then a huge gulf between them and 2b(3a/3b seem to be similar to 2b).The gulf between them and stage 4 a/b isn't so vast.