Sezary syndrome

Hi again Claire Cindy09 and well done navigating across to this corner of the community.

As I said in your post in the New to Community area I have lived with and been treated for my types of Cutaneous T-Cell NHL for over 25 years……

Like your Sézary syndrome…… my Mycosis Fungodes is also a type of Cutaneous T-Cell NHL but less aggressive……. but in late 2013 I was also diagnosed with the very aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) si this put me on a 2 year treatment journey that included 2 Allograft (donor) Stem Cell Transplants with cells from my brother…….

Consultants still tends to use the term Bone Marrow Transplant when actually referring to Stem Cell Transplants!!!

My story is rather complicated mainly due to me being treated fir two types of at-Cell at the same time……. so instead of my typing everything out just use this link > See my story where you will find my story in full…….. 

But as an encouragement……. I am now 9 years 8 months out from my last treatment, I turn 70 this year and I doing great.

Any questions just ask.

I forgot to ask…… are you in the UK?…… if you are, roughly where are you based and where will your SCT be done?

I'm in the north east my current treatment is at the freeman and the rvi

Hi again Claire Cindy09 first you will see that your phone number has been removed…… the community is not private so the whole world and some not so helpful people could have picked up on your number.

For a number of reasons I am not able to make direct contact by phone but this does not stop you getting support on here…..

There is not many people who have come through this group with your Sézary syndrome.

So to widen your support base I recommend that you check out Lymphoma Action.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where you can be linked up by phone with someone who has walked the same Sézary syndrome and Stem Cell Transplant journey……. I am a buddy with Lymphoma Action so we could well bump into each other

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Any questions just ask.

Sorry of hear this. Sezary is a form of T-Cell Lymphoma. In recent years, there has been some progress made on controlling it. One possible resource int he States is the Cutaneous T-Cell Foundation. Skin lymphomas are all that they are concerned with. 

https://www.clfoundation.org/

And some information from the Lymphoma Research Foundation, also in the States.

https://www.lymphoma.org/understanding-lymphoma/aboutlymphoma/nhl/ctcl/ctcltreatment/

At a minimum,there is more hope now than ever. I had no more than a 0% chance of survival, having three simultaneous blood cancers. Yet, 10 years after a transplant there is not a trace of them.