← Return to Anyone have Cutaneous T Cell Lymphoma?

Discussion

Anyone have Cutaneous T Cell Lymphoma?

Blood Cancers & Disorders | Last Active: Jul 9 8:01pm | Replies (175)

Comment receiving replies
@dws1968

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,

Jump to this post


Replies to "Hi All, I was officially diagnosed with Mycosis Fungoides several years ago, after several years with..."

@beeclee, I'm tagging you on this discussion so you can meet @dws1968 who was also diagnosed with Mycosis Fungoides.

You mentioned you will be getting light therapy. Are you referring to phototherapy?

i sent a reply in earlier on another thread on my CTCL treatment process. it went from a few small white dots on my thigh, to a palm-sized patch a few months into getting it checked by dermatologist. once a biopsy was made, the mycosis fungiodes diagnoses was confirmed. we treated for 6 weeks with Valchlor and then I started using Clobetasol 0.05% ointment and a home UV light on new and existing patch. Now the CTCL is in blood (12.5% cancerous T-cells) so we are using Targretin pills 300mg/day and bloodwork monthly.