Anyone have Cutaneous T Cell Lymphoma?

Hi @innocentlee, welcome to Mayo Clinic Connect. I moved your discussion to the Blood Cancers & Disorders support group. I'd like to invite @dws1968 and @shari715 who have recently talked about their diagnosis of mycosis fungoides on Mayo Clinic Connect and they may be able to share some of their story with you as you face this new diagnosis with your daughter.

@innocentlee, it sounds like you have been dealing with symptoms for a few years now, now that you have a diagnosis have any options for treatment or management been discussed moving forward?

Looking for anyone who has this type of lymphoma, my 16 year old daughter was just diagnosed on Monday.
We have already been dealing with this for two years, only the lymphoma has only now presented itself.

I am so fortunate with my Mycosis fungoides which I call CTCL, as I was diagnosed very early - stage 1a. Never happens but my dermatologist who has been seeing my skin for over 10 years noticed that a lesion had changed. I am using the light box (UVR) treatment successfully but it is very early days. I have not changed my diet, do not believe either cannabis or alcohol impact my symptoms either. I am followed closely by dermatology and oncology and am doing fine except it is not even a year. If you go onto the website for CTCL, there is tons of information that may be helpful. I am not itching but my skin is so fragile that I barely touch it and I have a bruise or an open wound. It is hard to cope but the doctors cheerfully tell me, this will not kill me. I hope this is helpful

Hi All,

I was officially diagnosed with Mycosis Fungoides several years ago, after several years with symptoms and not knowing what I had and just guessing at what it could be and even under a doctors care. Until, finally I saw a Dermatologist and then forwarded on to a local Cancer Research clinic.

I have a rash all over my body, worse in someplace than others and those places are usually my butt and the backs of my legs (where i sit) and my feet and lower torso, but again all over at some degree.

I am searching for feedback from everyone possible on your experience and particularly how you manage your skin for this on a regular or semi regular basis.

I feel like the that heat and pressure seem to aggravate or cause flare ups. as mentioned above worse on my backside and feet, depending on foot wear, anytime I wear a dress shoe, leather, more heat, long days like that.

Seems certain foods aggravate it. and causes more itching on top of the rash. Chips in general, certain cookies (brands of foods?)

Anyone have input on how alcohol and canabis effect symptoms or levels of aggravation?

I will leave it at this for now. New to the group as well so hoping to hear some good advice or just feedback.

Thank you,

Hope all goes well for your sister! Keep us posted!

My sister is being treated for T cell lymphoma on her arm.
They are used radiation, which involves magnetic and electrical
source that travels at the speed of light. Done in hospital. 5 sessions so
far
but going to do another biopsy as healing slowly than it should have.

All the best to you
Debby

It can be used for mine as well per my oncologist-she’s the expert in all things blood cancer in my area-unfortunately it is only 30% effective but if it works-it works. There are other chemotherapy options including pills, but she wants to give this a chance through end of year. I’d be happy with a 50% improvement in my skin!

Googled Belecodaq and it would be used in the treatment of Peripheral T Cell not Cutaneous? Is that what you are being treated for?

Oh, okay. I did not realize that. My sister had to go to the hospital for her radiation. Thanks!

The light box is UV radiation.