Does anyone have any feedback on Gray Zone Lymphoma?

@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?

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

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.

Thank you so much!

My 37 yo son was diagnosed with GZL last week. He is about finished with his first treatment. How is your nephew?

If you google grey zone lymphoma, you will find many helpful articles.
I did just that because I had not heard of it.
You are right. This type of lymphoma is rare but treatable. More is now known about it because of better diagnostics and awareness. The more patients, the more and better research becomes available.
It appears that the Mayo Clinic has experience with this type of lymphoma as they have published about it.
It tends to be diagnosed more in the elderly and the cause can be related to exposure to pesticides and other toxic agents.

Welcome to Connect, @kaitlyn0922 I’m sure you’re very worried about your son. It sounds like his oncologist jumped right into treatment if he was just diagnosed with GZL last week.

I want to tag @cmayer03 to make sure they see your post to give you an update about their nephew who also had treatments for GZL.

I’m not familiar with this form of lymphoma. What type of symptoms was your son having that led to his diagnosis?

Hello @kaitlyn0922 I wanted to check in with you to see how your son is doing. He must be finished with his first round of treatment. What medication is he taking? Is it oral or does he have IV infusions?

I have gray zone lymphoma. I did 8 rounds of chemo and was declared in remission March 2024. I am trying to claim worksafe as I worked in a hospital for 38 years preparing chemotherapy. Just the last 9 years was I fully protected. Does anyone have info on exposure to chemotherapy drugs unprotected and getting cancer?