Non Hodgkins T cell lymphoma and sezary cells

Hi  and welcome to the Online Community but sorry to see that your mum is going through treatment.

There are few folks who post with T-cell Sézary syndrome so let's hope some of the folks will come along and help out.

Is the treatment your mum was having called Extra-corporeal photopheresis (ECP) where some of her blood is treated with a drug called psoralen? This can be hard work and can open her up to infections.

I would talk with her team to get to understand where her treatment is going.

I do hope that some of the others see your post and we are always around to help out.

Yes that is the one she is having and it did open her up to infection which resulted in sepsis. She had to miss the third round of treatment as she was still in hospital but not sure whether to go for the next one but has to speak to her team

My husband has Sezary Syndrome. Because of his age(82) and other health conditions, he is getting 16 treatments of Adcetris (Brentuximab) 1 every 3 weeks.

This drug was just approved in the states. He feels much better, much less itching, and no major side effects except it makes everything taste bitter, and some fatigue.

There are a few people in Facebooks  Lymphoma Cancer Support Group that have CTCL and are undergoing photophoresis. 

Good luck to your Mom and to you as caregiver.

FormerMember, My journey started with being diagnosed with psoriasis in 2018 at age 74. After a clinical trial and & 2 1/2 years of biologics my diagnosis was upgraded to Sezary Syndrome after my white blood count spiralled.upwards.  
First line of treatment was oral weekly dosing of Methotrexate with folic acid on the other days and ECP blood treatment. After the treatment with Methotrexate plateaued I was prescribed daily dosing with the chemo drug, Chlorambucil.  After a month and slow results the next step is to be IV treatment with Brentuximab.

With your fathers experience being 5 yrs ago I would really like to hear of the outcome

Hi Sultana786,   Next week I a new treatment regime with the drug Mogamulizumab.  Everything that I have read indicate the the results are quite favourable.  Can anyone comment on their experience.

Hi Norseman44 I am not sure that all the members on this thread are still using the community but let’s see. 

I have talked with a number of folks over the past year or so who have had Mogamulizumab and did ok with it provided ok results.

Are you in the UK?

Good Morning Hylander,  I was born & raised in Northern Ontario, Canada. & now residing in the south of the province where, thank goodness, live in close proximity to expertise & treatment. Mogamulizumab only recently been approved in Canada & I will be a first for my clinic & oncology. 

Been through Methotrexate, ECP, Chlorambucil & Brentuximab already in my 9 months of treatment.  Hope I’m not disappointed

Let’s hope it does the job for you.

Over the years there have been a few new developments in treatments. Back in late 2013 when my condition became aggressive Allo (Donor) Stem Cell Transplant was my last hope……. but I now have some fall backs if it kicks off again.

Hi all, for those who have shared their story, I hope your treatments have had a positive impact on your health.

im 54, live in Birmingham in the Uk. I have very recently been diagnosed with Sezary. I’m currently awaiting a Bone Marrow Biopsy, and once the results are known a treatment plan will be put into place.

im really interested in knowing more about living with and battling Sezary

Hi JJV65 and welcome to this corner of the Community...... if you have had a look though the discussions in the group you will see that I was diagnosed way back in 1999 with my type of Skin (Cutaneous) T-Cell Lymphoma......my type is mycosis fungoides and your Sézary syndrome falls into the same group of CTCLs

My story is rather complicated (See my story) as I had to go onto have significant treatments mainly due to me developing a 'second' more aggressive type of T-Cell NHL in late 2013……….. but I am 8.5 years out from my last treatment and turned 68 last Nov and I doing great.