Anyone out there with stage 4B sezary syndrome? Was diagnosed 5 days ago.totally confused.
Hi, I’m so sorry to hear you have Sezary, I was diagnosed with Sezary stage 4a in May this year. It’s definitely hard finding anything other than the what is on this & cancer uk site but there is a great US site that has videos and presentations if you want to try that it’s www.cl.org. It’s a pretty rare cancer this one, ive been told as rare as hens teeth. Happy to give you any information of my symptoms, treatment etc if it will help. Alison
Sorry to here about your diagnosis, my dad has just been diagnosed with sezary syndrome, I don’t know what stage it is at yet, but he is 69 and has been suffering skin rash and pain with fevers for a few years now. He has just had a biopsy on his neck to sample the lymph node. I feel helpless and doctors don’t understand why it isn’t showing up in blood tests. They are calling it low grade, but everywhere I read states sezary syndrome is aggressive and not low grade. How did they diagnose you if I may ask.
I'm afraid that the original poster hasn't been seen on the forums for over a year, so unlikely to be back.
There is a group on the Macmillan site, specifically around T cell lymphomas, and this might be helpful to join
This may also be of help for information
Do you know what stage your dad has had in terms of his diagnosis?
You may also want to speak to someone on the lymphoma association helpline, either by telephone (0808 808 5555), or by making contact via the "live chat", bottom right of the page (office hours) for more information. I hope that this might help.
This site might also be a useful one to make contact with, and also has a helpline