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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shari715 | @shari715 | Dec 1, 2023
In reply to @sherriesalinas "I have CTCL and it was confirmed with biopsy. I was given an ointment and told..." + (show)
@sherriesalinas

I have CTCL and it was confirmed with biopsy. I was given an ointment and told to sit in sun a few minutes with lesions exposed. It has helped with my lesions. Best wishes. Sherrie

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Hi. I have mycosis fungoides which is a common type of CTCL. I am not an expert on treatment or the differences in cell type. As long as the treatment continues to work I am happy.

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1 reply
sherriesalinas | @sherriesalinas | Dec 1, 2023
In reply to @bradders "@shari715 thank you for your response. We are based in the Uk and to be honest..." + (show)
@bradders

@shari715 thank you for your response. We are based in the Uk and to be honest the NHS is not much better.The waiting list seems endless.

My son has been suffering for over 15 months now and every time he had this skin issue he was sent away with antibiotics, now as it’s an ongoing issue they are looking into it in a bit more dept, however I think if we knew for sure what we were dealing it would allow us to plan, at the minute it just seems to be a waiting game and also the actual diagnosis seems to take forever. My sons GP thinks he has this condition but obviously it’s the biopsy that will confirm, although reading some of the stories on this forum it seems people are having to have several biopsies for confirmed diagnosis?? I think this is worrying.

Thank you for your kind words.

Take Care.💕

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I have CTCL and it was confirmed with biopsy. I was given an ointment and told to sit in sun a few minutes with lesions exposed. It has helped with my lesions. Best wishes. Sherrie

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1 reply
sherriesalinas | @sherriesalinas | Dec 1, 2023
In reply to @shari715 "I have a slightly different cell type of CTCL. Also most people at diagnosis are not..." + (show)
@shari715

I have a slightly different cell type of CTCL. Also most people at diagnosis are not stage 1A. My blood work was normal as was the PET scan. I am also seen frequently by a dermatologists and oncologist. Who knows the easy treatment may end soon. Hopefully not.

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I’m sorry you have this. I have been diagnosed with CTCL in February this year. If you don’t mind me asking what is the slightly different cell type? All the best to you. Sherrie

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somde | @somde | Nov 16, 2023

Hi
If you read through comments I have shared my sister’s experiences. She had ten radiation treatments on one lesion. The others lesions had biopsy done.
The lesions are like yellow flaked skin with a small similarity to a wart.
I have had many questions answered on this forum. I was so worried about her.
She was a sun worshipper in her youth, she is 72 now. So far under control.
She has a blood specialist watching her results. I feel fortunate she is getting treatment but she is not out of the woods yet, with potential lesions not tested yet. I wish you all the best! This forum is very helpful and I am grateful how responsive people have been to share stories and experiences.

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norseman44 | @norseman44 | Nov 16, 2023
In reply to @somde "Although we all have some disorder to discuss, we have to be empathic to all suffering..." + (show)
@somde

Although we all have some disorder to discuss, we have to be empathic to all suffering and be supportive even if we listen to a story. It all helps us in many ways. Especially that we are not alone. I also am from Canada.

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@somde, can you share your diagnosis & treatment journey with us? In 2017 I was diagnosed with psoriasis and was being treated with biologics without much success. In summer of last year my WBC spiralled to 10x normal level & I was referred to a haematologist who, after blood work, diagnosed T Cell lymphoma & sent me to an oncologist who, after several tests diagnosed the Sezary. Treatment started end January.
Very pleased to have a cancer clinic in close proximity to us.
Knowing the extent of the symptoms of this illness I sympathize with anyone affected. There may not be a cure but we know that it is treatable.
Not life threatening, just life changing. Stay positive, you will get through this.

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somde | @somde | Nov 16, 2023
In reply to @colleenyoung "Welcome, @dgbucher. To help you connect with other members living with cutaneous T-cell lymphoma, like @innocentlee..." + (show)
@colleenyoung

Welcome, @dgbucher. To help you connect with other members living with cutaneous T-cell lymphoma, like @innocentlee @dws1968 @bradders @somde @shari715 @charlenekeogh and more, I moved your question to this existing discussion:

- Anyone have Cutaneous T Cell Lymphoma?
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
I look forward to getting to know more about you. What symptoms led to your diagnosis? Have you talked about a treatment plan with your care team yet? How are you doing?

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Thank you. I have already been part of many discussions.

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somde | @somde | Nov 16, 2023
In reply to @norseman44 "I was diagnosed with Sezary Syndrome in January 2023. I live in Canada & to date..." + (show)
@norseman44

I was diagnosed with Sezary Syndrome in January 2023. I live in Canada & to date I have received excellent care & attention. Started my treatment with Methotrexate & ECP, advanced to Chlorambucil, Brentuximab & most recently Mogamulizumab.
Too early to see significant results with the Moga but everything I read is positive.
This sites purpose should be to discuss symptoms, treatments & successes not complain about our health systems.

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Although we all have some disorder to discuss, we have to be empathic to all suffering and be supportive even if we listen to a story. It all helps us in many ways. Especially that we are not alone. I also am from Canada.

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1 reply
norseman44 | @norseman44 | Nov 16, 2023

I was diagnosed with Sezary Syndrome in January 2023. I live in Canada & to date I have received excellent care & attention. Started my treatment with Methotrexate & ECP, advanced to Chlorambucil, Brentuximab & most recently Mogamulizumab.
Too early to see significant results with the Moga but everything I read is positive.
This sites purpose should be to discuss symptoms, treatments & successes not complain about our health systems.

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1 reply
shari715 | @shari715 | Nov 15, 2023

I have multiple posts on the Mayo site. I think I have explained my history reasonably well. I am somewhat unique because I was diagnosed with Stage 1A which is unusual. I am also receiving light box treatments in my house which is very convenient. The biggest issue (seems strange to say this) but travel is difficult if I am away for more than a week or two. My other issue is my skin is fragile from a combination of dryness and light treatment. Let me know if you have specific questions.

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bradders | @bradders | Nov 15, 2023
In reply to @dgbucher "Does anyone here have cutaneous t-cell lymphoma? I was just diagnosed with it last week." + (show)
@dgbucher

Does anyone here have cutaneous t-cell lymphoma? I was just diagnosed with it last week.

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Welcome @dgbucher, as a family we are still trying to get a full diagnosis but this has been mentioned to us and we have been advised to read up about it.

Please let me know how you finally got your diagnosis.

Hope the treatment they are discussing works well for you.
All the best.

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