Does anyone have any feedback on Gray Zone Lymphoma?

Posted by cmayer03 @cmayer03, May 8 9:58pm

My 26 yo nelhew was recently diagnosed with Gray Zone Lymphoma which apparently is rare. He is on round 3 of chemo and the cancer seems to be responding. Just hard to find any info on his type.

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Patty, Volunteer Mentor | @pmm | May 9 8:00am

@cmayer03
Welcome to Mayo Clinic’s Connect. I had never heard of Gray Zone Lymphoma and hoped that there has been some discussion here about it, but my search of Connect yielded no results. It appears that it is rare indeed. It must be a stressful time for your family. I’m so sorry.
There is data cited in Mayo Clinic’s work with Gray Zone patients that covers a decade+ and it references six patients.
I found this informational, but I hope there will be patients or their families who can contribute to the discussion.
https://www.mayoclinicproceedings.org/article/S0025-6196(11)00023-1/pdf
It’s encouraging that your nephew is now responding to chemo. Have the chemo treatments side effects been manageable?

cmayer03 | @cmayer03 | May 9 8:37am

In reply to @pmm "@cmayer03 Welcome to Mayo Clinic’s Connect. I had never heard of Gray Zone Lymphoma and hoped..." + (show)

Thank you so much for sharing this information. I am hopeful that someone on here can share their experiences.

According to Memorial Sloan Kettering they have only seen 5 cases

Patty, Volunteer Mentor | @pmm | May 9 9:40am

I was very surprised that it is so rare. Connect has so many members, I hope that there is a patient or family member you can connect with.
Wishing you the best possible outcome for your nephew.

cmayer03 | @cmayer03 | May 9 11:19pm

Thank you so much!

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