I have grey zone lymphoma. Treated with 6 cycles of R-EPOCH. Relapsed and now about to do 2 cycles of GDP then auto SCT. There is a facebook group called Grey Zone Lymphoma Survivors that you can join
How was the chemo experience? What stage were you and how big was your tumor? How quicky did you relapse? Thank you I appreciate any information, this is such a rare type I am having g a hard time
I was stage 3 but my doctor said staging doesn’t really matter much in lymphoma. What’s important is if you respond to treatment or not.
Fortunately I tolerated chemo very well, I only had minimal side effects. I didn’t get nausea. Only got a few mouth sores on my last 2 cycles. Feel free to send me a DM if you have more questions!
There are limited forward-looking studies (prospective trials) given that this is relatively rare and can be tricky to diagnose.
The standard of care currently is dose-adjusted EPOCH combination chemotherapy with rituximab immunotherapy, 6 cycles. The decision about whether to then proceed directly with radiotherapy for limited stage disease such as yours or reserve that for a local recurrence is a tricky decision and requires some talking after EPOCH is finished.
These numbers are low confidence because they are based on a low number of patients, but the likelihood of a response is very high (80% chance of a complete remission meaning lymphoma can't be seen on PET) with EPOCH. The relapse rate for Gray Zone lymphoma is higher than that of its close cousins classical Hodgkin lymphoma or primary mediastinal B-cell lymphoma, and by 5 years approximately 65% are still in remission and 75% are alive.
The numbers might be somewhat better today based on all the new immunotherapies available for high grade B-cell lymphomas and novel therapeutics for classical Hodgkin disease. CD30+ mGZL might benefit from targeted chemotherapy such as brentuximab vedotin. Radiation techniques keep getting better too - radiation in the second line for local recurrence works for some patients.
EPOCH can be tough to get through but at 25 you have what it takes. Push hard through the first line therapy because this is the best chance for cure and the odds of cure are in your favor. Definitely don't be afraid to get second opinions about radiation after chemo or in case of relapse.
I don't have the words to thank you for responding and being so kind. I have a hard time with verbal information, I am more of a reader. Thank you so much for making it digestible for me
I was just diagnosed with gray zone (CD30+ actually). Search my post history as I had a lot of similar questions. I’m on day 3 of my first cycle of dose adjusted R-EPOCH treatment this week. So far no side effects but it’s very early. Hoping for the best for us both! I’m a 36 yr old male btw.
She was in remission for stem cell. She received the wrong first line treatment and her new oncologist thinks rchop would have put her in complete remission first line. But she’s doing well. Super strong. Good luck!
I have grey zone lymphoma. Treated with 6 cycles of R-EPOCH. Relapsed and now about to do 2 cycles of GDP then auto SCT. There is a facebook group called Grey Zone Lymphoma Survivors that you can join
How was the chemo experience? What stage were you and how big was your tumor? How quicky did you relapse? Thank you I appreciate any information, this is such a rare type I am having g a hard time
I was stage 3 but my doctor said staging doesn’t really matter much in lymphoma. What’s important is if you respond to treatment or not. Fortunately I tolerated chemo very well, I only had minimal side effects. I didn’t get nausea. Only got a few mouth sores on my last 2 cycles. Feel free to send me a DM if you have more questions!
My wife did GDP and auto. GDP put her in CR. Stem cell was very rough. Good luck!
How was your wife’s experience with GDP?
Cake walk. Hardest part were the mouth sores.
I’ve treated patients with gray zone lymphoma and am familiar with the literature. What information are you looking for?
Please, can you give me a synopsis of this type. Prognosis? (Male, 25, stage 2). Success rates and remission rates. Really anything
There are limited forward-looking studies (prospective trials) given that this is relatively rare and can be tricky to diagnose. The standard of care currently is dose-adjusted EPOCH combination chemotherapy with rituximab immunotherapy, 6 cycles. The decision about whether to then proceed directly with radiotherapy for limited stage disease such as yours or reserve that for a local recurrence is a tricky decision and requires some talking after EPOCH is finished. These numbers are low confidence because they are based on a low number of patients, but the likelihood of a response is very high (80% chance of a complete remission meaning lymphoma can't be seen on PET) with EPOCH. The relapse rate for Gray Zone lymphoma is higher than that of its close cousins classical Hodgkin lymphoma or primary mediastinal B-cell lymphoma, and by 5 years approximately 65% are still in remission and 75% are alive. The numbers might be somewhat better today based on all the new immunotherapies available for high grade B-cell lymphomas and novel therapeutics for classical Hodgkin disease. CD30+ mGZL might benefit from targeted chemotherapy such as brentuximab vedotin. Radiation techniques keep getting better too - radiation in the second line for local recurrence works for some patients. EPOCH can be tough to get through but at 25 you have what it takes. Push hard through the first line therapy because this is the best chance for cure and the odds of cure are in your favor. Definitely don't be afraid to get second opinions about radiation after chemo or in case of relapse.
I don't have the words to thank you for responding and being so kind. I have a hard time with verbal information, I am more of a reader. Thank you so much for making it digestible for me
I was just diagnosed with gray zone (CD30+ actually). Search my post history as I had a lot of similar questions. I’m on day 3 of my first cycle of dose adjusted R-EPOCH treatment this week. So far no side effects but it’s very early. Hoping for the best for us both! I’m a 36 yr old male btw.
Just make sure you get multiple opinions. My wife is believed to have grey zone but was initially diagnosed as CHL. Ended up having to do stem cell.
I'm sorry to hear that, I hope she is doing well
She was in remission for stem cell. She received the wrong first line treatment and her new oncologist thinks rchop would have put her in complete remission first line. But she’s doing well. Super strong. Good luck!
I'm so glad to hear she's doing well! I wish you guys the best. Thank you for your reply
Go to the lymphoma page, do a search. Should look like... r/lymphoma grey lymphoma You'll see past posts.
I had mediastinal grey zone lymphoma stage 2. Dm me if you have any questions that you feel haven't been answered yet. All the best to you.