Hello NormanS

I'm not sure that we have anyone currently active on the forum who is living with Sezary syndrome but we do have some posts where it has previously been mentioned. You can find these by using the search bar at the top of the page and searching for the term Sezary. 

You might also like to check out the Lymphoma UK website where they have some information about Sezary syndrome. You might also be able to connect with others who have experience with this diagnosis and treatment through one of their support forums. 

I do hope that you're able to chat with others soon and wish you well with your ongoing treatment. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hello Norman,

I was diagnosed with Sezary in April 2020 and I am currently 7 months post stem cell transplant. Happy to answer any questions you may have, if I can.

Please see the links below to sites I have found useful. 

Regards

John

https://www.newcastle-hospitals.nhs.uk/services/dermatology/patient-dermatology-information-leaflets/sezary-syndrome/

https://en.wikipedia.org/wiki/S%C3%A9zary_disease

https://www.macmillan.org.uk/cancer-information-and-support/lymphoma/cutaneous-t-cell

https://www.clfoundation.org/sezary-syndrome

There is also a group on Facebook called Sezary Syndrome

John,  thx for the return, links & offer to answer questions. I would assume that the stem cell transplant followed other treatment trials. Can you give me a brief summary of your journey.  Also assume that your cancer is in remission and life back to normal, correct?

This is a rough timeline of my treatment -

18 Feb 2020 GP sent bloods to Haematology Department, Western General
10 Mar 2020 Consultation with Dr Mueng. Very high white blood cell count
12 Mar 2020 Bone marrow biopsy at Western General
30 Mar 2020 CT Scan at Western General
2 Apr 2020 Diagnosed with T-Cell Prolymphocytic Leukamia
18 May 2020 Skin biopsy at Lauriston Place
16 Jun 2020 Re-diagnosed with Mycosis Fungoides
18 Aug 2020 Started Methotrexate treatment
7 Feb 2021 CT Scan at Western General
2 Mar 2021 Lymph node biopsy at Western General
29 Mar 2021 Consultation with Dr Buxton at Western General. Diagnosed with Sezary Syndrome (Cutaneous T-Cell Lymphoma)
30 Mar 2021 Started Bexarotene treatment. Daily pills.
14 Apr 2021 First ECP appointment at Royal Infirmary. Two appointments fortnightly thereafter
30 Jul 2021 CT Scan at Western General
21 Dec 2021 Start of 8 week treatment of Interferon. Daily self-administered sub-cutaneous injections.
16 Feb 2022 CT Scan at Western General
17 Feb 2022 Final ECP treatment at Royal Infirmary. Stopped Bexarotene.
1 Mar 2022 Brentuximab treatment starts at Ward 7, Western General. Three weekly cycle
12 May 2022 CT Scan at Western General
1 Jun 2022 Lymph node biopsy at Western General
2 Jun 2022 Bone marrow biopsy at Western General
7 Jun 2022 Mogamulizumab treatment at Ward 7, Western General. Weekly cycle.
2 Aug 2022 Final Moga treatment
5 Sep 2022 Start of TBEBT at Freeman Hospital, Newcastle
30 Sep 2022 Last TBEBT treatment at Freeman Hospital
12 Oct 2022 CT Scan at Western General
13 Oct 2022 ECG/Echo, Pulmonary Function Test and Dental Assessment at Western General
18 Oct 2022 PET scan at RIE
21 Oct 2022 Tooth extraction at Western General
22 Nov 2022 Hickman Line fitted at Western General
23 Nov 2022 Admitted to QEUH, Glasgow for SCT
24 Nov 2022 Daily intravenous doses of Alemtuzumab, Fludarabine, and Melphalan. Reduced-Intensity Conditioning (RIC)
1 Dec 2022 Stem Cell Transplant
15 Dec 2022 Discharged from QEUH
20 Dec 2022 Weekly cycle of video consultation with transplant doctors and having bloods taken at Ward 7 begins
1 Mar 2023 1st COVID vaccine
2 Mar 2023 Bone marrow biopsy at QEUH
29 Mar 2023 2nd COVID jab & Flu jab

Sezary is currently in remission, but recovery from SCT is very slow and can bring its own health issues. I suffer chronic fatigue, gastric issues and, recently, GraftvHost Disease. I am on a list of meds the length of my arm, some of which have their own side effects. 
At the moment, I am getting better, just very slowwwwly!