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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georgie2 | @georgie2 | Sep 13, 2023
In reply to @somde "Hi Georgie I do not have a unit. Maybe you were thinking of someone else’s post...." + (show)
@somde

Hi Georgie

I do not have a unit. Maybe you were thinking of someone else’s post.
My sis was treated for her T-cell with radiation therapy at hospital. 5 treatments over 5 weeks. All the best!

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Sorry, there must be some mistake, @somde. My comment shows that I was commenting in reply to @shari715, who posted that she owns a home phototherapy light box which she had ordered from that company. I have not seen a reply from her yet.

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shari715 | @shari715 | Sep 13, 2023

I am sorry. I thought I had replied. I do have a light box in my house. It is from a company called National Biological. It is a Phototherapy device with Narrowband UVB lamps. Phone 216-831-0600 or 1-800-338-5045. The staff and the owner are extremely helpful and pleasant. My insurance company would not initially pay for it but in the end after multiple calls by myself and the company agreed to pay for most of it. It is a pleasure doing it in my house. I was only diagnosed at the beginning of the year but so far no new lesions. Good luck. Let me know if you need more information

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 21, 2023
In reply to @scoeyjr "Received diagnosis in January this year after being improperly diagnosed as having psoriasis then being told..." + (show)
@scoeyjr

Received diagnosis in January this year after being improperly diagnosed as having psoriasis then being told I was allergic to medication I was taking! Stage 2b, received 6 doses of Adcetris from February-June which cleared -up my open wounds, stopped my horrendous lymphoma itching and stopped the major leaking (lymphoma sweating). I’m on a new chemo to clear up the skin-it covers my torso and my back still is majorly discolored BUT I am better than 6 months ago! It just takes time and I am a bad case so don’t judge yourself by me! Just be patient and follow your doctor’s orders-Pet scans have been negative so no cancer inside, just in my T cells. Be well!

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@scoeyjr, how is the new chemo regimen working for you?

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1 reply
scoeyjr | @scoeyjr | Sep 25, 2023
In reply to @colleenyoung "@scoeyjr, how is the new chemo regimen working for you?" + (show)
@colleenyoung

@scoeyjr, how is the new chemo regimen working for you?

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I’m up to 80% of it (Beleeodaq is the brand name I believe-can’t remember the proper spelling!)-it still sends me to “outer space” a bit and a little nausea but I’m able to drive home and go to work next day. Skin seems to be responding so another 3 months! Wheee! Thanks for asking!

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1 reply
shari715 | @shari715 | Sep 25, 2023

Good to know. I am hoping to avoid chemo. But it is not likely. My dermatologist says the lights should keep the disease at bay but oncologist says he will need to prescribe chemo at some point.

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shari715 | @shari715 | Sep 26, 2023
In reply to @somde "Ask about radiation." + (show)
@somde

Ask about radiation.

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The light box is UV radiation.

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1 reply
somde | @somde | Sep 27, 2023

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

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norseman44 | @norseman44 | Sep 27, 2023
In reply to @scoeyjr "I’m up to 80% of it (Beleeodaq is the brand name I believe-can’t remember the proper..." + (show)
@scoeyjr

I’m up to 80% of it (Beleeodaq is the brand name I believe-can’t remember the proper spelling!)-it still sends me to “outer space” a bit and a little nausea but I’m able to drive home and go to work next day. Skin seems to be responding so another 3 months! Wheee! Thanks for asking!

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

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2 replies
scoeyjr | @scoeyjr | Sep 27, 2023
In reply to @norseman44 "Googled Belecodaq and it would be used in the treatment of Peripheral T Cell not Cutaneous?..." + (show)
@norseman44

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

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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!

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