Anyone familiar with lymphomatoid granulomatosis?

I've just finished up 6 cycles if R-epoch treatments and 4 cycles of high dose methotrexate. Doing fair just dealing with affects of the chemo and LYG.

Hi all, I was recently diagnosed with lyg in the lungs. They initially thought it was autoimmune. I’m doing Keytruda through OSU James.

@mari2ferris
So sorry about LYG.
Would you like to read about how LYG is related to Epstein-Barr virus (EBV)?
Pulmonary Lymphomatoid Granulomatosis With Hemophagocytic Lymphohistiocytosis as the Initial Manifestation.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7000656/

Hi all, I see this is an older thread. I am starting R-Chop soon for Grade 3 LG as Keytruda then Rituximab infusions only slowed growth but didn't put me into remission. Would love some more recent updates on progress/experiences. Thanks in advance.

@mari2ferris
My 44 year old son was diagnosed with this in march.
He will be starting the same regimen plus methotrexate next week. How are you doing? Are you tolerating the chemo? Any insight would certainly help. Such a rare and awful disease!
Thank you

@jvohnoutka Welcome to Mayo Clinic Connect! I’m sorry that you came to MCC because your son has this bad disease. But all the members here will do their best to help you! You might also wish to check the Caregiving discussion group as your son may need your help with everyday things. Is your son married with children? Remember, we are here 24/7/365 to answer your questions. Please ask the members here anything and everything==we will try our best to answer.
You might also want to try this link to National Organization for Rare Diseases:
https://rarediseases.org/rare-diseases/lymphomatoid-granulomatosis/

@jamie72
My 44 year old son was diagnosed in March 2026.
How is your journey going?
NIH, Dr Jaffe finally got a diagnosis for us. He will begin treatment next week. Any advice/knowledge would so helpful to us. Hope things are going well for you.

@mari2ferris
My 44 year old son was diagnosed in March 2026.
How is your journey going?
NIH, Dr Jaffe finally got a diagnosis for us. He will begin treatment next week MR-CHOP. Any advice/knowledge would so helpful to us. Hope things are going well for you.

@becsbuddy
Thank you. I am currently living with him as he has a hard time walking.

@jvohnoutka I am so sorry to hear of your son's diagnosis. Thank you for sharing. I am extremely fortunate that I'm tolerating it well so far. Is the MR-CHOP making him weak/impacting his ability to walk? I had similar troubles at the beginning of Keytruda - it took me about 6 weeks to regain strength. I do a lot of nutritional support right now - water, lean meats, fresh vegetables and fruits from farmer's markets, vitamins, liquid IV and ensure max protein to keep my body as strong as possible. I am exercising a lot every day too and trying to be outside as much as possible - it helps my spirit and I think just makes me feel better overall. I'm also tracking my daily 'wins' and things I'm thankful for - I put these items on post its on my office wall so that I can easily see the volume of these items; it is helping me on days when I feel a little lost. Please keep me posted on your son's journey. Best wishes and thank you for helping him - I also rely on my parents a lot these days and I'm so grateful for them.