Is Cutaneous T-Cell Lymphoma a Death Sentence?

@paulb2112
Greetings and welcome to the Mayo Connect. For me, the most stressful part of the whole process has so far been waiting for a definitive diagnosis. Most of us jump on the Internet and confer with Dr. Google. She is definitely a glass half empty kind of gal. For whatever reason, it seems that she focuses on the worst case scenarios and that’s scary. Then the anxiety kicks in and can literally make you feel sick. It can increase your white count and affect your sleep and appetite which have snowballing consequences.
I hope it’s not a long time before you see the oncologist and can perhaps get some more definitive answers.
Since you don’t know what to treat, perhaps if you focus on feeling less anxious. Different people deal with anxiety in different ways but for me, I spend time with loved ones and friends enjoying life… Good food, good discussions, and trying to keep my head in a positive place.
I’m really glad that you found Connect because there are some wonderful, supportive people who post here. We may not all have the same medical issues, and we are certainly all different, but it helps to get support from people who have been facing similar health challenges.
I will keep you in my thoughts. Will you share the information about your upcoming oncology visit with us?

I was diagnosed with Cutaneous T Cell Lymphoma back in 2010. It took quiet awhile to get a definite diagnosis. I was treated with UV light treatments. I was affected on my limbs (legs and arms) but no body areas. I finally went into remission about two years after that with only UV treatment and anti itch meds. I had major sores and almost looked like a bad case of measles. Really. It did produce a internal tumor or two that were removed. One remaining over the liver area. Which has never changed in size and remains in place. Now in 2024 I developed a new situation of sores and terrible itching on my limbs (legs and arms) again. First it was thought to be a dermatitis but time again proved it to be T Cell. This time I am doing photo therapy and anti itch creams; and have been doing so for the past 6 months. The itching has finally stopped and I seem to be about 90 percent healed again. Sunlight is my friend and I try for at least 15 minutes a day in the sun plus am winding down on the phototherapy. Will see doctors again in August to see what my blood work determines. And what the professionals decide is needed for any follow-up to be sure it goes into remission.

Hi Patty, thank you so much for your thoughtful reply. I’ve been doing my best to try to keep myself occupied. Working, going out to dinner, sharing this with my very, very close friends and getting their support as well as huddling in little corner booths with my husband who’s been very very supportive. I have moments of clarity and moments where a shade, or a tone or a cloud will trigger an emotional response of anxiety and half the time I don’t know why. I was giving anxiety meds today to try and I don’t know if I really need them so much probably do more so at night , but as I wait for more information to come in, I am reminded of caring people like yourself who will help me and others get through this. Thank you so much and I will definitely be keeping in touch with this group and you, as things progress or or hopefully don’t progress. 🥰Paul

I was diagnosed with Cutaneous T Cell Lymphoma back in 2010. It took quiet awhile to get a definite diagnosis. I was treated with UV light treatments. I was affected on my limbs (legs and arms) but no body areas. I finally went into remission about two years after that with only UV treatment and anti itch meds. I had major sores and almost looked like a bad case of measles. Really. It did produce a internal tumor or two that were removed. One remaining over the liver area. Which has never changed in size and remains in place. Now in 2024 I developed a new situation of sores and terrible itching on my limbs (legs and arms) again. First it was thought to be a dermatitis but time again proved it to be T Cell. This time I am doing photo therapy and anti itch creams; and have been doing so for the past 6 months. The itching has finally stopped and I seem to be about 90 percent healed again. Sunlight is my friend and I try for at least 15 minutes a day in the sun plus am winding down on the phototherapy. Will see doctors again in August to see what my blood work determines. And what the professionals decide is needed for any follow-up to be sure it goes into remission.

So sorry to hear all you’re going through. It sounds as if your body is fighting it tooth and nail and that you have a knack for beating it down despite it rearing its ugly head. How old are you? I’m 61 and feel that if this is early stage for me, it will be something that will eventually take me to my grave. But at the same time, your story inspires me so much. I feel like mine might be different since it’s in such a high risk area of my groin. And, maybe it has the propensity to attach itself to a lymph node and go system wide at some point. I think that might be my biggest fear, but I don’t know much about t-cell lymphoma. I think mine might be Micosis Fungoides? Not sure if that is bad or worse then Sevary. I’m too afraid to find out. My hope is that my genetic study comes back negative for genetic abnormalities, that would point to lymphoma. Did they do the gene test on you and how did that come out? Thanks for your time. -Paul

I’m praying for you too, you have quite a story and even though it’s been a tough ride, I find it to be inspiring. For me as I told you, 61, this is not the road of uncertainty I wanted. We are all given three main things we can die of: fire, car accident and cancer. I never wanted it to be that. The word scares me. Keep at it, keep fighting you have a solid dozen more years to go! If we could just learn to be present, we wouldn’t worry so much about the future. But every new rash and bump will just pull us out of that safe feeling and thrust us back to fear. Thats what we will always deal with.

I have been diagnosed with CTCL about two years ago. I have been keeping it under control with the triamcinolone cream and narrowband UVB treatment. It has done a good job of controlling it. Still have a few rashes and red spots. The disease has focused my life and I don’t procrastinate and do the things I want to do and accomplish. Yes, living with the uncertainty is not fun but we have to make the best out of it and live our lives to the fullest!