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Diagnosed with POT1 Gene; CLL/SLL ; Non specific thickening right eye

Posted by tatayababa @tatayababa, Jun 23, 2023

Diagnosed with POT 1 Gene May 22; Diagnosed with CLL and lymphoma jan /23 ; no treatment watch and wait; eye exam yesterday showed non specific thickening; anyone else had similar situation?

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 24, 2023

Welcome to Mayo Connect, @tatayababa
I’m not finding any information from other discussions in the forum where members with CLL/Lymphoma have had thickening in their eyes. Is this in the eye itself or in the layer covering your eye?

While we wait for other members to respond we do have a very active CLL/Lymphoma support group. With your recently diagnosed CLL and lymphoma I’m sure you have questions and concerns. Here are some links for you to check out with members @justinesmith @normahorn @kegraves @carl50 and many others who have CLL personally or have family members involved:
~Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

Were you diagnosed with a specific type of lymphoma?

REPLY
1 reply
tatayababa | @tatayababa | Jun 24, 2023
In reply to @loribmt "Welcome to Mayo Connect, @tatayababa I’m not finding any information from other discussions in the forum..." + (show)
@loribmt

Welcome to Mayo Connect, @tatayababa
I’m not finding any information from other discussions in the forum where members with CLL/Lymphoma have had thickening in their eyes. Is this in the eye itself or in the layer covering your eye?

While we wait for other members to respond we do have a very active CLL/Lymphoma support group. With your recently diagnosed CLL and lymphoma I’m sure you have questions and concerns. Here are some links for you to check out with members @justinesmith @normahorn @kegraves @carl50 and many others who have CLL personally or have family members involved:
~Just diagnosed, what can be done? https://connect.mayoclinic.org/discussion/cll-leukemia/

Were you diagnosed with a specific type of lymphoma?

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Hi Lori; SSL; I was diagnosed with POT 1 gene i have yearly checks on eyes; cardiac etc; the thickening is in the eye itself; im heading back for another test Sept 25 she if there is an increase of thickening; if it has gotten thicker; i will have to have a biopsy.

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