Anyone have Cutaneous T Cell Lymphoma?
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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Can you share the names of the steroid creams that appear to work for you.
Others may appreciate knowing
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?
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.
I am not using any steroids or any other ointment. I use a UV light box three times a week.
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.
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.
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.
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.
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?
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.