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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Mentor
Lori, Volunteer Mentor | @loribmt | Oct 24, 2023
In reply to @charlenekeogh "Hi all My 33 yr old son was diagnosed in July with CTCL/MF. He had "eczema"..." + (show)
@charlenekeogh

Hi all
My 33 yr old son was diagnosed in July with CTCL/MF. He had "eczema" for about 7 years and had a spot on his back that was the size of a quarter. He went to a couple of different dermatologists over the years being treated with many different creams, a cortisone shot or 2 and 3 differed Biopsies and then the last one done in July of 2023 in NYC came back that he has CTCL. It is scary, we have so many questions that have not been answered. To top it off they have Not come up with a treatment plan. The spot on his back is now 4" x 7" and looks like he was burned with an iron. (its the only way to explain the look) He had a PET scan and all organs are clear.
He is going to one of the best hospitals in NYC and I am at a complete loss. Some of you are being treated with a light box, I was wondering how quickly the Dr came up with this treatment plan? My son has an appointment again on November 7th with both the Dermatologist that specializes in CTCL and the oncologist. If we dont walk out of there with some sort of plan and answered questions we are going to have to go elsewhere where we can have another doctor help us maneuver through this new life.

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Welcome to Connect @charlenekeogh. You found the right discussion group with members who also CTCL such as @shari715, @dws1968 and newer members @penn1023, @innocentlee, who are in a similar period of waiting for a diagnosis and possible treatment options. Maybe @shari715 will be able to talk to you more about light therapy.

It’s frustrating that it took so long for a correct diagnosis for your son but it seems to be a common trait. I found a good article about CTCL from the Cutaneous Lymphoma Foundation that might provide you with some useful information.

Cutaneous Lymphoma Foundation
https://www.clfoundation.org/
Hopefully your son’s meeting with the two specialists in November will get him on a path to treatment. Will you please let us know what he finds out?

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1 reply
shari715 | @shari715 | Oct 24, 2023
In reply to @innocentlee "Looking for anyone who has this type of lymphoma, my 16 year old daughter was just..." + (show)
@innocentlee

Looking for anyone who has this type of lymphoma, my 16 year old daughter was just diagnosed on Monday.
We have already been dealing with this for two years, only the lymphoma has only now presented itself.

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I am sorry about your son. Cancer when you are a young adult is not fun. I have multiple posts on this site which may be helpful. The first thing you need to know is the Stage and only then can there be a treatment strategy. Let me know if I can help.

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1 reply
charlenekeogh | @charlenekeogh | Oct 25, 2023
In reply to @shari715 "I am sorry about your son. Cancer when you are a young adult is not fun...." + (show)
@shari715

I am sorry about your son. Cancer when you are a young adult is not fun. I have multiple posts on this site which may be helpful. The first thing you need to know is the Stage and only then can there be a treatment strategy. Let me know if I can help.

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Thank you @sharie715 I will definitely be reaching out for guidance, information and knowledge.

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charlenekeogh | @charlenekeogh | Oct 25, 2023
In reply to @loribmt "Welcome to Connect @charlenekeogh. You found the right discussion group with members who also CTCL such..." + (show)
@loribmt

Welcome to Connect @charlenekeogh. You found the right discussion group with members who also CTCL such as @shari715, @dws1968 and newer members @penn1023, @innocentlee, who are in a similar period of waiting for a diagnosis and possible treatment options. Maybe @shari715 will be able to talk to you more about light therapy.

It’s frustrating that it took so long for a correct diagnosis for your son but it seems to be a common trait. I found a good article about CTCL from the Cutaneous Lymphoma Foundation that might provide you with some useful information.

Cutaneous Lymphoma Foundation
https://www.clfoundation.org/
Hopefully your son’s meeting with the two specialists in November will get him on a path to treatment. Will you please let us know what he finds out?

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Thank you so much. The CLfoundation.org was very helpful just in watching 1 video. It definitely put my mind at ease.
I will definitely keep everyone posted.
@innocentlee please let me know how your daughter makes out. They say it is rare for my son to have this at 33.

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buddoc | @buddoc | Oct 25, 2023

I have CTCL- MF. Initially, that is about 8yrs ago, I had 72 UVB light treatments ( phototherapy) which cleared the lesions, mainly on my legs. I stayed in remission until 4 months ago and started on steroid creams, which hasn’t been too successful. I’m waiting to see my dermatologist to consider further treatments. I am 80yrs and have multiple co-morbidities .

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1 reply
shari715 | @shari715 | Oct 25, 2023

Hi. That is very interesting. My dermatologist has said I would need light treatment for the rest of my life. Neither dermatologist or oncologist can say when I would be in remission and how they can tell if the disease is progressing. With my non-Hodgkin lymphoma it took 24 years before an oncologist stated I was in remission and did not need any more scans. Now I am back to having scans, appointments, blood work etc. I hope the doctors find a reasonable treatment strategy for you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 2, 2023
In reply to @buddoc "I have CTCL- MF. Initially, that is about 8yrs ago, I had 72 UVB light treatments..." + (show)
@buddoc

I have CTCL- MF. Initially, that is about 8yrs ago, I had 72 UVB light treatments ( phototherapy) which cleared the lesions, mainly on my legs. I stayed in remission until 4 months ago and started on steroid creams, which hasn’t been too successful. I’m waiting to see my dermatologist to consider further treatments. I am 80yrs and have multiple co-morbidities .

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Hi @buddoc, welcome. How long has it been since you stopped UVB light treatments? Have you talked with the dermatologist in the meantime? Might you be able to start light treatments again?

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charlenekeogh | @charlenekeogh | Nov 3, 2023
In reply to @shari715 "The light box is UV radiation." + (show)
@shari715

The light box is UV radiation.

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@shari715 do you use a chemo cream with your light box? My son is seeing his Dermatologist and oncologist on Nov 7 and I want to ask about some treatments. As I said in my initial post, we have pretty much have been left in the dark about this rare lymphoma. I am really hoping he will get staged at this visit and given a treatment plan.
How does everyone feel about Clinical Studies? My son is 33 and nothing has been talked about in going forward But, the oncologist called and wanted to put him in a clinical study that was just approved in June. There are not enough people with CTCL/MF in our area to have completed this study. They need 20 people to sign up for it and they don't have 20.

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1 reply
shari715 | @shari715 | Nov 3, 2023
In reply to @charlenekeogh "@shari715 do you use a chemo cream with your light box? My son is seeing his..." + (show)
@charlenekeogh

@shari715 do you use a chemo cream with your light box? My son is seeing his Dermatologist and oncologist on Nov 7 and I want to ask about some treatments. As I said in my initial post, we have pretty much have been left in the dark about this rare lymphoma. I am really hoping he will get staged at this visit and given a treatment plan.
How does everyone feel about Clinical Studies? My son is 33 and nothing has been talked about in going forward But, the oncologist called and wanted to put him in a clinical study that was just approved in June. There are not enough people with CTCL/MF in our area to have completed this study. They need 20 people to sign up for it and they don't have 20.

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I have only had this diagnosis for 8 months. In the next month I will see my dermatologist and oncologist again. I am only using the light box three to four times a week. I am not sure where you would put the cream as I don’t have visible lesions. The stage of the disease is very important and provides a course of treatment. I remain as of now Stage 1A. The oncologist indicated when the disease progresses there are multiple chemo drugs available. He did not say anything about a cream. I think you will have more information soon. Please keep in touch.

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norseman44 | @norseman44 | Nov 4, 2023

My understanding is that CTCL is a blood disorder that is typically treated on the inside with drugs & ECP. Light treatment & creams may be treating the symptoms and providing relief but is not necessarily treatment ing the condition.
My T-cell Lymphoma, subtype Sezary Syndrome, is currently being treated with the drugs Methotrexate &=Brentuximab but soon to be starting on Mogamulizumab as I am not getting relief from the symptoms as yet. Through ECP we have been able to get my WBC back to normal & drugs are maintaining
It may not be life threatening but it sure is live changing. Stay strong

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