Anyone diagnosed with Primary Central Nervous System (CNS) Lymphoma?

Hi @shellcat25, I thought I'd check in. Did you and your husband decide to get an appointment at Mayo Clinic in Arizona? How are you both doing?

Scottsdale would be best for us. Yes, we’d love any suggestions! Thank you!

Hi @shellcat25 You and your husband have been on quite a journey already. When you’re ready for the next step of the stem cell transplant at Mayo, there are a number of us willing to share our experiences to make that adventure easier for you with tips and suggestions for lodging, favorite/necessary items to have for the lengthy stay, requirements for post SCT, etc..
Which campus will your husband be visiting?

Thanks for that suggestion. I welcome any tips/advice. We will be contacting Mayo for the next steps - stem cell. Very happy to hear your story!! I believe my husband will fully recover also! God bless you!

I was diagnosed with primary CNS lymphoma in 2019 at age 58. I had 6 rounds of MRT chemo, then my own stem cell transplant. I am cured and fully healthy!
May I suggest eating gelaTEIN?
It is refreshing & full of protein. I got it at Mayo.
May God bless you with a full recovery!

My husband was diagnosed June, 2023. All doctors thought it was sleep apnea, but my son and I knew it was more than that. An MRI showed a mass in his brain. Starting round 3 of HighDose MRT in a few days. He’s already so much more cognitively aware. You’d never know anything was wrong until you look at his scar on his head. Doctor was talking about High Dose chemo with stem cell (his own cells). Anyone have any experience in this? He’s incredibly healthy 60 year old. He looks like he’s 40 and works out for 2 hours every day.

My partner of 15 years was recently diagnosed with PNS Lymphoma. In spite of being 84 years old, his neurosurgeon proposed a craniotomy and removal of the tumor in his left temporal lobe; otherwise, he said that my partner’s quality of life would be jeopardized. He said that he was in general good health so surgery was recommended. About a month before diagnosis, his symptoms were nausea, loss of balance, forgetfulness (he couldn’t figure out the functions of his cellphone, would forget the codes to his security alarm system and the garage, had difficulty with simple math) and not being able to articulate what he wanted to say. He went for surgery on December 1 and now is suffering from extreme confusion and delirium. The prognosis is very grim and the hospital medical team are now proposing moving him to palliative care. Needless to say, we, his family, are devastated (an understatement). He was someone, who in his 80’s golfed twice a week, fished, hiked, traveled extensively and was living an active, beautiful life. The whole thing happened so suddenly and quickly and his quick deterioration after his surgery was totally heartbreaking and overwhelming.