AITL lymphoma diagnosis

Posted by elika7 @elika7, May 7 10:08pm

In the name of God
Hello everyone
I'm Elika and do pray for all of us to get well soon
has anyone diagnosed with AITL here?
It's very rare and challenging to diagnosis
I had done biopsy for 4 times and still not exactly diagnosis but it's suspected
I will be grateful if anyone has the same problem in diagnosis process so could give me some advice
I hope God saves and heals everyone

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Lori, Volunteer Mentor | @loribmt | May 8 9:21am

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?

elika7 | @elika7 | May 8 3:01pm

In reply to @loribmt "Welcome to Connect @elika7. It can feel lonely when you have a rare diagnosis. So I’m..." + (show)

@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

coloradored | @coloradored | May 8 9:02pm

Hi, Elika. It's important to get treated as soon as possible after an AITL diagnosis. If you live within reasonable travel distance of a major city, it would be very important to seek help with a definitive diagnosis at the medical center there since the pathologist are more likely to be better trained.

elika7 | @elika7 | May 9 8:08am

In reply to @coloradored "Hi, Elika. It's important to get treated as soon as possible after an AITL diagnosis. If..." + (show)

@coloradored
ancologist is suspicious but he says I can't start a treatment without a certain diagnosis and pathologist can't make an accurate diagnosis
Very bad situation and my symptoms getting worse by the time
Can you mention Which center is very specific for AITL and T cell lymphoma to get diagnosis
Most important
I'm not in the U.S i live in a war_torn country and TFH panel and some IHC kit not available
so I prefer to seek for a center in the U.S or Europe wich is not expensive
I'm very grateful for your advice
God bless u

coloradored | @coloradored | May 10 7:06pm

I'm so sorry that you are unable to get a definitive diagnosis. I live in the US & have access to hematologists/oncologists. If it is possible for you to travel to Poland, that may be the best option for you to receive a diagnosis & begin quick treatment.

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