Please help. Sezary syndrome.

My husband (aged 61) was diagnosed with Sezary syndrome on Friday. To say it was a shock is something of an understatement. He went to see a dermatologist privately, who was provided by his company’s insurance. He went with an itchy skin and was bluntly told he has aggressive sezary, that it isn’t curable and there was no treatment available.

Looking online at the nhs site, it would seem there are several treatments available. My husband has an appointment with an nhs dermatologist consultant next Saturday.

We are still reeling from this and would appreciate any advice about anything really.

  • Hi again , first take a breath..... then another.

    Sezary Syndrome is a type of Cutaneous T-Cell Non Hodgkin’s Lymphoma

    I have lived and been treated for my type of CTCL for over 22 years now. It's a long story but if you hit my community name you can have a look.

    You will see that my type (Mycosis Fungodes) is also incurable but has been treated successfully for all my year and I am now into my 5th year in remission.

    Sezary Syndrome is a high grade skin Non Hodgkins Lymphoma - hit this LINK and this will take you to some good 'real' information on the Lymphoma Action web site.

    Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service.

    Please stay away from random google searches as you are just going to get confused.

    You will see from the link there are lots of treatments available for Sezary Syndrome....and I have had a good number of these treatments over my years.

    It is very important that he is seen by a consultant who understands this condition as not all Dermatologists will have treated it.

    A few questions:

    Has he been diagnosed based on a skin biopsy?

    What hospital is he going to be seen at by the Dermatologist?

    Do you know the consultants name?

    Have a look at the Links and come back with your questions.

    ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Thank you so much for your reply. Since Friday we’ve googled the hell out of sezary…and most of the time I wish we hadn’t.

    John is seeing a dermatologist next Saturday at Lancaster infirmary (U.K.). We don’t know his or her name yet. 

    Meanwhile, the private consultant is sending him for a biopsy on this coming Friday in Blackpool. He is Dr Arif Aslam at Spire Fylde Coast Hospital.

  • Hi again, until there is clear biopsy pathology results on the table the Dermatologist is making a ball park diagnosis.

    These types of skin NHL can be very similar so it needs the biopsy to look for the exact cells to type this.

    I will say that even although my very experienced Dermatologist was 99% sure I had MF it still took a year and 6 biopsies to get the evidence. Normal time for results to come back is 2-3 weeks but it is getting close to Christmas so be prepared for a wait.

    Did the consultant suggest any immediate treatments?

    Yes, google will give you a 1000 answers and only a few will be anything near correct - stick to Lymphoma Action for information.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • The consultant just said there were no treatments available. We are assuming now that he meant in the private sector, as there seems to be plenty on the nhs.

  • How is he doing? 

    There are various stages of these conditions 

    Does he have raised open sores that bleed or is his skin inflamed and flacking?

    Does he have any other symptoms like lose of weight, raised lymph-nodes?

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • He’s quite well in himself, good appetite and is active. Skin is unbearably itchy and red and that does cover 80% of his body. The skin on face and scalp is falling off at an alarming rate though. His white blood cell count is sky high.

  • I do totally feel for him, it is so hard at this early stage.

    Let’s look for some answers to be found and a plan put in place to move this in a positive direction.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • I sent an email yesterday to a professor at Guys, who specialises in Sezary Syndrome. His secretary has replied asking me to phone. I’m not sure whether to ring now, or on Monday, after John has seen the NHS consultant. He will have the results of numerous blood tests and a bone marrow test them.

  • Professor Sean Whittaker and his team at Guys are the UKs top people when it comes to cutaneous oncology. Do phone and see what they are saying as you need to get in quick if you want their input.

    Professor Whittaker was involved in reviewing my case and recommending my treatment plan - this is very good news.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • I rang and was told that to be referred, John will need to ask for referral when he sees the consultant. He’s going to do that on Monday.