1. < Blood Cancers & Disorders

Anyone have Cutaneous T Cell Lymphoma?

Posted by cindylb @cindylb, Jul 28, 2017

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.

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norseman44 | @norseman44 | Jun 27 7:53am
In reply to @richsully "I am a 58yr old male that was diagnosed wit CTCL last June. This after many..." + (show)
@richsully

I am a 58yr old male that was diagnosed wit CTCL last June. This after many years of treatment of this area and others as I have mild eczema rashes on elbows, arms etc. The CTCL area is on the back of my upper legs (no sun) and would not respond to creams the same as other eczema rashes. Basically the area stayed red-ish/pink and bumpy regardless of treatment. So after many different eczema treatments the area was biopsied and diagnosis confirmed with blood test. I was told I will always have this condition but it should not affect my life generally, no decrease in life span generally. I do wonder if it could later complicate and combine with other cancers if I develop something.

Happily my current treatment is two different steroid ointments (ointments have always worked better for me on eczema than creams), each for two weeks alternating. Also to supplement with 20 minutes of sun a few times a week in the summer (live in NE). The area has improved significantly over the past 10 months by sticking to this treatment program - it is fainter now and hard sometimes to identify where to apply ointments. It never really itched or spread so that isn't wasn't a problem. I'm hopeful that some upcoming sun exposure might further reduce the rash as that helps my eczema each year, dry heat in winter bad, warmer weather colder showers and some sun helps.

I think the rash worsened when I was in my 20's and didn't treat the eczema for many years while in school or existing without real health insurance.

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Can you share the names of the steroid creams that appear to work for you.
Others may appreciate knowing

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 27 9:26am
In reply to @pastororwin580 "Yes since 2015." + (show)
@pastororwin580

Yes since 2015.

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Welcome to Connect @pastororwin580. It looks as though you were diagnosed with CTC in 2015. Would you like to share a little more about your experience? Are you currently being treated for the condition?

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pastorcorwin580 | @pastororwin580 | Jun 27 9:47am

I was treated by radiation on my feet and shoulder. It seemed to control it BUT I was told by my new oncologist that once an area was irradiated it was ineffective to radiate again. I use Clobetasol .05% to spot treat eruptions.

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shari715 | @shari715 | Jun 27 10:09am
In reply to @norseman44 "Can you share the names of the steroid creams that appear to work for you. Others..." + (show)
@norseman44

Can you share the names of the steroid creams that appear to work for you.
Others may appreciate knowing

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I am not using any steroids or any other ointment. I use a UV light box three times a week.

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devincito69 | @devincito69 | Jun 27 7:00pm
In reply to @norseman44 "Can you share the names of the steroid creams that appear to work for you. Others..." + (show)
@norseman44

Can you share the names of the steroid creams that appear to work for you.
Others may appreciate knowing

Jump to this post

I was diagnosed with CTCL in March 2023. We started treating with Valchlor gel (special order/cold storage) and then moved onto Clobetasol 0.05% and I used a at-home UV light daily for 1-2 minutes on the white patches. Now, the CTCL has moved to my blood and am taking 4x75mg Bexarotone (Targretin; a chemo pill) for a total of 300mg a day plus 2 pills to manage hypothyroidism and triglycerides. a long slog so far, with one huge patch (the size of my palm) which Valchlor did a good job at attacking.

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devincito69 | @devincito69 | Jun 27 7:08pm

In mid-2022 I noticed 3-4 small dime to quarter size white patches developing on my thigh. A co-worker immediately advised, "go see a dermatologist". In Nov 2022, a dermatologist looked at my spots. At first it was treated as ring-worm. This was a wrong diagnosis. A biopsy shave was done in Jan 2023 and this revealed mycosis fungiodes CTCL type cancer. We started a chemotherapy by gel (Valchlor) in Feb/March 2023. By April 2023, I had gotten an infection in the wound site (I am a biologist deep in the water last season), so I discontinued the Valchlor after 6 weeks. A few months after leaving Valchlor, more spots appeared (dime size) in new areas on my legs and forearms. Now I am using Targretin as a blood test revealed the CTCL in bloodstream. One month in with the 300mg/day of Targretin. All work done at Scripps in San Diego.

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devincito69 | @devincito69 | Jun 27 7:24pm
In reply to @dws1968 "Hi All, I was officially diagnosed with Mycosis Fungoides several years ago, after several years with..." + (show)
@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,

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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.

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58skywagon | @58skywagon | Jun 28 8:56am

I was diagnosed with CTCL in October of 2022. The diagnosis was finally done after a couple of years of having a rash on my back. I was seen by Mayo Clinic and was given a prescription of Clobetasol .05% cream. I also acquired a narrowband UVB light box. Between the cream and the light treatment the rash is under control. I did about 35 treatments of the light and am now taking a break. Still using the cream on a daily basis.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 29 10:03am
In reply to @58skywagon "I was diagnosed with CTCL in October of 2022. The diagnosis was finally done after a..." + (show)
@58skywagon

I was diagnosed with CTCL in October of 2022. The diagnosis was finally done after a couple of years of having a rash on my back. I was seen by Mayo Clinic and was given a prescription of Clobetasol .05% cream. I also acquired a narrowband UVB light box. Between the cream and the light treatment the rash is under control. I did about 35 treatments of the light and am now taking a break. Still using the cream on a daily basis.

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Welcome to Connect, @58skywagon. Thanks for sharing your positive news about the treatments you’ve used for your CTCL. It can take some sleuthing to get the right diagnosis and then again, for treatment options! Sounds like you have a great combination between the Clobetasol cream and the light treatments. Do you have a light box at home or did that require trips to a clinic?

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1 reply
58skywagon | @58skywagon | Jun 29 11:07am
In reply to @loribmt "Welcome to Connect, @58skywagon. Thanks for sharing your positive news about the treatments you’ve used for..." + (show)
@loribmt

Welcome to Connect, @58skywagon. Thanks for sharing your positive news about the treatments you’ve used for your CTCL. It can take some sleuthing to get the right diagnosis and then again, for treatment options! Sounds like you have a great combination between the Clobetasol cream and the light treatments. Do you have a light box at home or did that require trips to a clinic?

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I was able to get a Daavlin narrowband UVB light box. It is about 6 feet tall and has 8 lights. The unit folds up nicely. It has saved me a lot of time. I have done about 35 treatments, about three times per week. Started with a low dosage and gradually increased the exposure.

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