In 2018 I was diagnosed with Psoriasis. After a number of trials on steroid drugs I moved on to biologics, Tremfya, Skyrizi & Taltz. During this time, nothing was able to clear the scaling on my hands & feet. In the spring of 2022, my white blood count began to rise (reaching 124E9);and my MD referred me to a hematologist who diagnosed the T Cell Lymphoma and referred me to an Oncologist. Biopsies confirmed & closer defined my condition as Sezary Syndrome.
First line of treatment was a weekly dosing with Methotrexate & ECP blood treatment, biweekly. After 12 weeks my WBC had fallen but had plateaued to mid 30’s and my meds were switched to Chlorambucil. Only in second week so can’t judge effectiveness yet.
Through all this my conditions have not improved significantly and currently experiencing swelling on face & eyes, which is impairing vision terribly, have lost all my hair, caused scalp scaling and joint issues.
Just looking for a little confirmation that my experience is somehow normal & will see improvement, eventually.
I live in Ontario, Canada
Hi Norseman44 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Sézary syndrome but I was diagnosed way back in 1999 at 43 with another rare, incurable but treatable type of skin Non Hodgkin’s Lymphoma Mycosis fungoides eventually reaching Stage 4a in late 2013 so although my Skin Lymphoma ‘type’ is slightly different I do appreciate the challenges of this journey rather well.
These Skin Lymphomas can be hard to diagnose, very hard to treat and often very hard to live with.
My story is 24 years long long and complicated but you can see my story by using the following link My cancer story
Both our types of skin Lymphoma are very rare and this brings the problem of receiving suitable treatment from an expert in the field of Skin Lymphoma.
My Dermatology, Oncology, Haematology and Stem Cell Transplant teams have been amazing and eventually after 16 years of only achieving partial remission the longest being 9 months to achieving remission back in Sep 2016 and remission in remission to this day.
There is obviously differences between the approach’s in the UK and in Canada but the treatments available are basically the same but everyone’s skin NHL will develop ever so different.
Always around to chat and help as best as I can.
When it comes to living with and being treated for a skin NHL you have to do what needs to be done to get through.
Skin Lymphomas often run in cycles of having treatment, achieving some period of respite then back on the treatment cycle again.
Our treatment is often only as good as the person who oversee it. Not many consultants will have experience of your/my conditions.
I am very fortunate that my local Dermatologist had experience in treating my condition but also he had my case overseen by one of the top UK/European experts in Cutaneous NHLs Professor Sean Whitaker at Guys and St Thomas’s in London…. I live over 550 miles away but it was worth gaining the impolite from him.
Let’s look for your next set of treatment to make a good difference.
does MF come with the itching & compulsive scratching that I’m experiencing with my Sezary?
Most certainly yes….. how do you not scratch…… you just don’t!!!!
I had various steroid and none steroid creams over the years with lots of different Emollient creams like Diprobase Doublebase and Hydromol Cream being the best. For all the first 16 years until my skin was completely clean only used Dermol 200 Shower Emollient.
When it was at its worst, just before bed my wife would cover all my skin with Hydromol Cream and I would care cotton PJs, cotton socks and gloves and at times a cotton skull cap…… this often meant that the bed sheets had to be changed every morning.
When the urge to scratch came along I always carried a small tub of Hydromol Cream and putting this on took the itch out.
As of about Oct 2015 once my new immune system was built using my Allo (donor) Stem Cell Transplant my sun has been perfect although I have some skin damage due to my radiotherapy and the many UV treatment but nothing that holds me back.
When I was 70% covered the challenges of itching was massive but on the top hole I controlled the urge as I knew that this would bring some challenging infection risks.
Most T-cell skin lymphomas are diagnosed at an early stage. The staging system used depends on the type of T-cell skin lymphoma you have:
Sézary syndrome is very similar to mycosis fungoides but it affects the blood as well as the skin. Most people with Sézary syndrome develop it without having had any milder form of skin lymphoma beforehand.
I was able to keep my skin relatively under control with a combination of UV treatments, drugs and Interferon alfa (a) injections under my tumours.
Then it went into my bone marrow and this is when it kicked off.
Mike, a most informative article, thx. What are the ingredients of that hydromol cream? Not inexpensive, C$30.00 for 500g on Amazon.
Your bedtime story reminded me of an old one. Did you hear about the old lady who rubbed her husband in vaseline?
Answer, He went down hill pretty fast after that. 
I have no idea about the ingredients of Hydromol but it helped me.
I talk with lots of people who are navigating their journeys with their journey with the 60 types and subtypes of Lymphomas but living with a skin Lymphoma is rather unique and challenging.
