Sezary Syndrome.

[Champlain]

After many months of fighting a complete body rash, I was visually diagnose with Sezary Syndome and had to discontinue my CLL treatment with Venetoclax, only did 8 months out of 24 months due to the rash condition. Is there anyone with knowledge of this or was there any previous postings? I greatly appreciate any information on this Sezary Syndrome.

[AussieNeil Partner Administrator]

Sorry, but we only have this one post about Sezary Syndrome healthunlocked.com/cllsuppo...

Neil

[lankisterguy Volunteer]

Hi Champlain,

Here is much more info on it: aka CTCL or Cutaneous T-cell lymphoma, is a general term for several types of T-cell lymphomas of the skin, including mycosis fungoides, Sézary syndrome, primary cutaneous anaplastic large cell lymphoma, lymphomatoid papulosis, granulomatous slack skin disease, pagetoid reticulosis, and subcutaneous panniculitis-like T-cell lymphoma, to name a few. Most CTCLs typically fall into the category of indolent (i.e. chronic) lymphomas – treatable, but not curable and usually not life-threatening.

clfoundation.org/cutaneous-...

lymphoma.org/understanding-...

As a group, CTCL is a rare family of diseases, with approximately 3,000 new cases reported in the United States every year. CTCL is more common in men compared to women and in patients older than 50 years of age compared to younger people. By 70 years old, there is a four-fold increase in the number of cases of CTCL. Since the disease has a slow course and diagnosis is sometimes difficult, there are probably many more people living with CTCL than current numbers estimate.

The two most common types of CTCL are mycosis fungoides (MF) and Sézary syndrome (SS). Together, they make up about three quarters of all CTCL.

aad.org/public/diseases/a-z...

hopkinsmedicine.org/health/...

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Len

[SFF95]

I was diagnosed with mycosis fungoides which lead to my SLL diagnosis. Check out clfoundation.org and find a specialist. Cutaneous T cell lymphomas are very rare. It took over 20 years for me to be correctly diagnosed with mycosis fungoides. Luckily, my MF was resolved with Valchlor.