Is Cutaneous T-Cell Lymphoma a Death Sentence?

Posted by paulb2112 @paulb2112, Jul 18 11:53pm

Hi, I’m 61 years old. Not 100% diagnosed yet. They still have to do a genetic organization test. But biopsy came back with elevated white blood cells and lymphatic infiltrates.
My red patch is in my groin area on the right side about the size of a small 5” pancake. It is red but faint, not raised, a little shiny, but no itching or cracking. No night sweats, no fever, no cuts or bleeding. Not presenting as advanced. Dermatologist is unsure and sending me to oncologist. I’m seeing “5 years to live” all over the internet and it’s scaring me to death. I just got the news today. While it’s not definite should I be worried about a short timeline? Can the biopsy showing elevated t-cells not necessarily be cancerous? If they are cancerous, what is my life expectancy. I do have a pre-existing lung disease/immune related, that has been in remission for 11 years. I’m healthy with perfect weight for my height, workout and run 3.5 miles daily. Drink only one light alcoholic drink per week. Do not smoke. I’ve only had this red patch for seven weeks. Please help provide some information if you can. Thanks, Paul

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58skywagon | @58skywagon | Jul 25 7:50am

In reply to @norseman44 "Would your CTCL be Sezary Syndrome or MF? I have SS, have asked about phototherapy but..." + (show)

I was diagnosed with MF. I have itching on my buttocks and upper legs. I also use an itch relieving cream that I buy over the counter. It seems to help.

paulb2112 | @paulb2112 | Jul 25 10:34am

In reply to @norseman44 "Would your CTCL be Sezary Syndrome or MF? I have SS, have asked about phototherapy but..." + (show)

So, we don’t even 100% know yet. Because it’s early stage. No itching. Just a faint rash that is responding to fluocinilone cream. It’s likely not Sezary, might even be something like Sjogrens because my immune system is quite wonky. I’ve had lung issues before caused by immune responses and the production of too many white blood cells or too many blood cells rushing to my lungs and causing restriction. So we are not sure yet I’m waiting for a gene rearrangement study was hoping to get that but haven’t gotten it yet. Sorry about your itching. I know it must be horrible. Just walking around with this In my groin area is enough to keep me conscious about it every waking moment so let’s a collective sigh and just wish it all away

58skywagon | @58skywagon | Jul 27 6:15am

My CTCL is the MF

norseman44 | @norseman44 | Jul 28 7:24am

In reply to @58skywagon "I was diagnosed with MF. I have itching on my buttocks and upper legs. I also..." + (show)

What is the name of your anti-itch cream? I use a product called Hempz which gives quick relief during the night. Daytime is mostly steroid creams

paulb2112 | @paulb2112 | Jul 28 9:03am

I don’t actually use it anymore because I never had itching except at biopsy site. The best I have found for itching is Cortisone anti itch cream. Nothing special.

58skywagon | @58skywagon | Jul 28 11:25am

In reply to @norseman44 "What is the name of your anti-itch cream? I use a product called Hempz which gives..." + (show)

I use Eucerin, it’s an over the counter cream. It doesn’t give total relief but is helpful.

pastorcorwin580 | @pastororwin580 | Jul 29 4:25am

I am 74, prescribed Clobetasol. 05%. It seems to meditigate the eruption using morning and evening, though it may take a couple weeks. I use an over the counter anti itch cream in addition once a day if I don't catch it early.

Colleen Young, Connect Director | @colleenyoung | Jul 29 4:07pm

@pastororwin580 @58skywagon @paulb2112 @sdg45, you may also be interested in this related discussion:
- Anyone have Cutaneous T Cell Lymphoma?
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/

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