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 | Feb 10 10:22am

I am not sure about the diagnosis because it is made by cell type. It seems your treatment is monitored by the dermatologist but I wonder about seeing an oncologist. The staging of the CTCL was made by the oncologist. The Cancer Society is very helpful, many faith based organizations provide some type of transportation assistance, Meals on Wheels and senior centers can be very helpful. I will acknowledge that services have definitely decreased in the last five years and finding things is so much more difficult. Even very busy family members can be helpful when asked to do something specific. Medical issues are so difficult

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scoeyjr | @scoeyjr | Feb 10 12:50pm

I am sorry you have the diagnosis and wish you the best of luck.
I was misdiagnosed until I found out I had stage 2b-all over my torso. T-cell lymphoma is a rare form of blood cancer-I don’t understand why people don’t understand when I tell them-they see the skin and think skin cancer or psoriasis and the key is “lymphoma.”
Do all you can to defeat this nasty disease! I’m currently on my second round of chemotherapy. Be well!!

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somde | @somde | Feb 15 2:06am
In reply to @kbirt "Thank you for your concern. It is nice to know that I am not alone. I..." + (show)
@kbirt

Thank you for your concern. It is nice to know that I am not alone. I always say that I have been very lucky as there are a lot of people out there that have bigger problems than me. I live in Franklin, IN. Since SS is my only source of income, I do have to watch my spending. Unfortunately, I have always had to put off any health care for myself. I am twice widowed with both Wifes dying of major diabetic complications.
I must say that this condition is somewhat confusing to me. The final diagnosis from my dermatologist was Sub-cutaneous T-cell Lymphoma. I would assume that 'Sub' would mean under the skin. I think this was an error on her part. Also confusing is whether this is a cancer or not. Since cells are being changed and told to attack skin, it would sound like a cancer tome. And yet, I read that this is not a skin cancer:
Cutaneous T-cell lymphomas: These lymphomas start in the skin but are not a type of skin cancer. They account for about 5% of all lymphomas and include conditions like mycosis fungoides and Sezary syndrome23.
Regarding transportation, I have just changed my health plan this year and have not had a chance to try it out. My former plan included transportation, so I made an appointment and the day before my appointment they called and said it was not available in my area. I had to cancel. I have one daughter, two young adult granddaughters and son-in-law all with their own problems and too busy for me. Whatever, life goes on and you deal with what life throws at you. There is always tomorrow until there isin't.

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Life goes on - nobody has time to listen - we have to carry on and trust in the Lord! Best wishes and may the peace of Christ be with you.
This site is amazing to share and people do share.
Keep sharing and we will listen!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 15 8:03pm
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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@beeclee, I'm tagging you on this discussion so you can meet @dws1968 who was also diagnosed with Mycosis Fungoides.

You mentioned you will be getting light therapy. Are you referring to phototherapy?

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2 replies
beeclee | @beeclee | Feb 16 8:58am
In reply to @colleenyoung "@beeclee, I'm tagging you on this discussion so you can meet @dws1968 who was also diagnosed..." + (show)
@colleenyoung

@beeclee, I'm tagging you on this discussion so you can meet @dws1968 who was also diagnosed with Mycosis Fungoides.

You mentioned you will be getting light therapy. Are you referring to phototherapy?

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Hi... I am a "newbie" I was told "UVB Light Therapy"

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shari715 | @shari715 | Feb 16 10:51am
In reply to @colleenyoung "@beeclee, I'm tagging you on this discussion so you can meet @dws1968 who was also diagnosed..." + (show)
@colleenyoung

@beeclee, I'm tagging you on this discussion so you can meet @dws1968 who was also diagnosed with Mycosis Fungoides.

You mentioned you will be getting light therapy. Are you referring to phototherapy?

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It is UVB light therapy. Three times a week.

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bilpal6 | @bilpal6 | Mar 7 6:57pm

I was diagnosed with CTCL in November of 2022. I have been told I am in stage IIB. I have been prescribed methotrexate, steroid creams and phototherapy 3X a week. In January of 2024, I am now receiving a weekly shot of pegasys. I’m trying to get an understanding of what my life expectancy is and to understand how this disease may or may not progress. My understanding is that this is a chronic disease and treatment will be life long. Can anyone provide any guidance?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 10 8:22pm
In reply to @bilpal6 "I was diagnosed with CTCL in November of 2022. I have been told I am in..." + (show)
@bilpal6

I was diagnosed with CTCL in November of 2022. I have been told I am in stage IIB. I have been prescribed methotrexate, steroid creams and phototherapy 3X a week. In January of 2024, I am now receiving a weekly shot of pegasys. I’m trying to get an understanding of what my life expectancy is and to understand how this disease may or may not progress. My understanding is that this is a chronic disease and treatment will be life long. Can anyone provide any guidance?

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Hi @bilpal6, welcome.
I moved your post about being diagnosed with stage IIB CTCL to this existing discussion so you can connect with members like @cindy16 @shari715 @beeclee @kbirt @sherriesdalinas @cmahan10 and others who have CTCL and are undergoing similar treatments:
- Anyone have Cutaneous T Cell Lymphoma? https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/

How are you doing on Pegasys?

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1 reply
bilpal6 | @bilpal6 | Mar 11 8:30am
In reply to @colleenyoung "Hi @bilpal6, welcome. I moved your post about being diagnosed with stage IIB CTCL to this..." + (show)
@colleenyoung

Hi @bilpal6, welcome.
I moved your post about being diagnosed with stage IIB CTCL to this existing discussion so you can connect with members like @cindy16 @shari715 @beeclee @kbirt @sherriesdalinas @cmahan10 and others who have CTCL and are undergoing similar treatments:
- Anyone have Cutaneous T Cell Lymphoma? https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/

How are you doing on Pegasys?

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@colleenyoung Thank you so much

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shari715 | @shari715 | Mar 11 10:27am
In reply to @bilpal6 "I was diagnosed with CTCL in November of 2022. I have been told I am in..." + (show)
@bilpal6

I was diagnosed with CTCL in November of 2022. I have been told I am in stage IIB. I have been prescribed methotrexate, steroid creams and phototherapy 3X a week. In January of 2024, I am now receiving a weekly shot of pegasys. I’m trying to get an understanding of what my life expectancy is and to understand how this disease may or may not progress. My understanding is that this is a chronic disease and treatment will be life long. Can anyone provide any guidance?

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Hi. I am not sure what your doctors have told you. I am stage 1A and currently doing phototherapy. I believe this is a chronic condition that will according to oncologist require constant monitoring and treatment but will not “kill me”. My dermatologist is more optimistic and says phototherapy will be the only treatment needed and it is chronic. In other words wait and see.

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