Sezary Syndrome - how bad is it?!

[Pappa Lurve]

Afternoon all.

A very good friend of mine has recently been diagnoised with Sezary Syndrome. I understand it is a form of lukeimia but having looked online I really don't understand the prognosis. It seems like it is pretty serious. The Lady in question is in her early 70's, had diabetis but other than that is in amazing health, not over-weight at all, very fit for a lady of her age and has always looked after her health well.

Frustratingly, it seems to have only been found at a fairly late stage although physically she feels fine, other than a skin rash which is a symptom.

She lives in the US but the cost of any treatments is not an issue at all. Whatever she needs is available to her.

Are there any Doctor types on here who could perhaps give me a rough idea of how serious this is? From reading online it looks pretty nasty but all the websites I have found are pretty technical and way beyond my very limited medical understanding.

Thanks all.

[scrawler]

http://www.bad.org.uk/site/841/default.aspx

http://www.patient.co.uk/showdoc/445/

http://www.patient.co.uk/DisplayConcepts.asp?WordI...

don't know much about it - it's quite rare and tends to be treated by dermatologists rather than haematologists

above links may help

otherwise it may be worth trying the lymphoma association- they may have more info

scrawler x

[Pappa Lurve]

Thanks for those links. I understand they are treating the skin issues but also that she has to have some kind of treatment that sounds a bit like dialysis which strikes me as fairly aggressive and thus, I assume used to deal with something nasty.

Appreciate you taking the time to reply. A little worried about it all and I dont want to keep asking her and causing her stress.

Cheers

[scrawler]

sounds as if she may be having photopheresis

it's a bit like dialysis in that the blood is taken from the body and treated with ultraviolet light in order to treat the T lymphocytes or white cells which drive the condition in the first place

quite complicated to explain

hopefully it will work for her

all the best

scrawler

[Pappa Lurve]

Thats exactly it. I am assuming you know about such things - honestly, how worried should I be here?

[scrawler]

My speciality is Haematology, specifically bone marrow transplant (nurse), but it is a long time since I was involved with Lymphoma's - as said previously most of the patients with Sezary syndrome were dealt with by the dermatologists. We use photopheresis in transplant for a specific complication hence I know a little about it.

I am really unable to offer much of an opinion as to the current treatments and management of the condition- it may be worth looking at the cancerbacup, leukaemia research or lymphoma association websites - I think they both have phonelines so you could ask general questions about the treatments and management.

However as with many of the situations regarding treatments of conditions to get specific info re how an individual may respond to a treatment it is really necessary to speak with the medical team dealing with the person.

scrawler