CCTL and Crohn's disease

Hi michaelbythesea and first sorry for not getting to your post but my email notifications have not been coming in.

CCTL…… ??? I can’t find these initials…..

I have CTCL - Cutaneous T-Cell Non Hodgkin’s Lymphoma (often called Mycosis Fungodes) a rare skin Lymphoma.

Anything like the same as me or do you no exactly what CCTL stands for

Hi again michaelbythesea, so just seen your other post. You do have CTCL 

I was diagnosed way back in 1999 it’s a long story so do hit my community name Thehighlander and have a look and get back with any questions.

Important to say I have never had Crohn's.

Hi Mike,

Thank You for taking time to reply.  I have read your story and am very impressed with your spirit and determination through all your trials.  Wow!  Each of us travels our own challenging path, and it helps to hear stories of success in spite of such difficult challenges. And I know its not 100%, sometimes just getting thru each day is an accomplishment.  

Since I just discovered this board, I have not yet completed a profile.  FYI,, I am a 71 year old retired wildlife biologist with a wonderful wife of 45 years who has recently been diagnosed with dementia, and three grown daughters, two who live 150 miles away, and one who lives in The Netherlands.  I have had CTCL -Sezary Syndrome for approximately three years; took one year to correctly diagnose.  I also had a heart attack three years ago and was life flighted to a hospital for stent replacement after a three day attack.  For my CTCL I was first was put on a biologic, Mogamozulimab...and it helped until it caused a host of awful side effects,including severe arthritic attacks, and bringing my Crohn's out of remission (first diagnosed in 2003 and in remission since 2012 till January 2021). My GI Dr. decided to put me on methotrexate, and I am currently injecting 25ml weekly. However, he is under the mistaken impression it will also successfully treat CTCL after some early encouragement from my oncologist. It seems to be helping the Crohn's, but  had a very weak effect on my CTCL, and now my itching is severe, even with applying topical corticosteroids twice a day.

And what I am hearing from my oncologist is that there are so few people with CTCL and Crohn's that there is basically no good data on treatments for both diseases simultaneously.  I have been told the next recommended treatment is photophoresis, but with Coronavirus overwhelming the one hospital here that does the procedure, I will be waiting several months at least.

Thanks again for taking time to reply.  Support from others who have gone thru this is valuable.

Michael

Hi again Michael, CTCL in itself is a rather complicated chronic illness that normally has a continual effect on your immune system so your immune system will be working over time trying to keep your skin under control and not allow any infected areas to get out of control.

I was never offered Photopheresis…… extracorporeal photoimmune therapy (ECP) mainly due to me having to do a 9hr round trip to the nearest treatment centre.

My very well respected Dermatologist had treated CTCL a number of times and had a good understanding of the treatment steppingstones. He also referred my case to Professor Sean Whittaker - consultant dermatologist at Guys and St Thomas' and he also agreed that going to ECP my be a sledgehammer to break a nut approach.

He was correct in my case as although I had various other treatments it took 14 years to get to the point of needing to use the big gun treatments.

How is your CTCL presenting at the moment?