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elika7 avatar

AITL lymphoma diagnosis

Blood Cancers & Disorders | Last Active: May 10 7:06pm | Replies (5)

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Profile picture for Lori, Volunteer Mentor @loribmt

Welcome to Connect @elika7. It can feel lonely when you have a rare diagnosis. So I’m very glad you joined Connect…there are several members here who also have been diagnosed with angioimmunoblasty T cell lymphoma. (AITL)

I’m posting a few links for you with conversations of members sharing their experiences. You’ll meet other members @fed66 @thenester @bizzylizzy and others who have AITL
(More conversations can be found by typing in AITL in the search bar above)

-Angioimmunoblasty T Cell Lymphoma
https://connect.mayoclinic.org/discussion/angioimmunoblasty-t-cell-lymphoma-aitl/
-This from @bizzylizzy who had a autologous stem cell transplant for her AITL
https://connect.mayoclinic.org/discussion/neutropenia-and-thrombocytopenia-100-days-after-autologous-stem-cell/
It looks like you haven’t gotten a confirmed diagnosis yet? I’m sure this is really a stressful time for you. So I hope there are answers found soon!
What symptoms are you experiencing? Has your doctor discussed any potential treatment plans with you?

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Replies to "Welcome to Connect @elika7. It can feel lonely when you have a rare diagnosis. So I’m..."

@loribmt
Thanks for your help
Actually it's almost 2 years since I've noticed my symptoms
Unfortunately no diagnosis yet and No treatment
I live in a country with very poor medical care and most of the pathologist have not enough knowledge and experience about this rare lymphoma and TFH panel doesn't exist in the lab
I'm just waiting
praying to God