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Sezary Syndrome and Mantle Cell Lymphoma (in 1 person)

Ted de Leeuw's picture
Ted de Leeuw
Posts: 2
Joined: Feb 2018

My beloved sister in law is currently fighting 2 lymphoma’s; Sezary Syndrome and Mantle Cell Lymphoma. we live in the Netherlands and here she is the only person diagnosed with these 2 cancers. She feels very alone, because she is probably the only person diagnosed with this combination.

My mission is to find another person with this diagnosis who would be willing to talk/chat with her, it would mean the world to her.

Can you please help me find that person or do you have suggestions how to find that person? Please let me know, we will be very grateful!

 

po18guy
Posts: 991
Joined: Nov 2011

Even though she feels very lonely, she is not. She shares the journey with every other cancer patient on earth. With such a rare combination, she may never find a "match." I had Peripheral T-Cell Lymphoma - Not Otherwise Specified and Angioimmunoblastic T-Cell Lymphoma at the same time. Probably not another patient on earth with that combination either. For the Sezary Syndrome, I was going to recommend Dr. Bertrand Cioffier in Lyons, but he has retired. His replacement must be as good as he is. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I don’t have the same kind of lymphoma but am here for whatever I can offer.  I do understand loneliness.  Possibly more than most.  Reach out and start somewhere.  This is a GREAT group with support, information, experience and if nothing else an ear to listen.

Hang in there.

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