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

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.

I want the thank secglc2 for the comments that were made. Like you I placed my trust in the ‘Man upstairs’ and how He was truly my helped me through this part of my life.
When I was first diagnosed I was placed into ICU. I do not remember any of this part of my hospital experience but what my wife states, I was not in a coma but I was incognito for the first week that I was in the hospital. During my first week I was pulling out IV lines and did not understand anything that was stated to me and I did not make any sense when I tried to talk. I was restrained during this time. Thank God I do not remember any of this time. Fortunately I do not remember any of this.
I have had to relearn how to write and also to use my computer. As we came down the the end, a MRI was done. The Hope was that it would show a negative (or normal) result and it was not normal. Thought at this time, with me being older (77), was not necessarily bad but May mean future issues. Well, in March of 2023, it will be 7 years. since I was diagnosed.
As I mentioned earlier, the ‘Man upstairs’ has been with me all along. The truth is this that was with me during the good times as well as the times when you do not know where He is. He is with you more when you don’t see Him, or when you don’t feel Him. Sometimes those are the times He’s there when it’s the most difficult times of your life.

I want the thank secglc2 for the comments that were made. Like you I placed my trust in the ‘Man upstairs’ and how He was truly my helped me through this part of my life.
When I was first diagnosed I was placed into ICU. I do not remember any of this part of my hospital experience but what my wife states, I was not in a coma but I was incognito for the first week that I was in the hospital. During my first week I was pulling out IV lines and did not understand anything that was stated to me and I did not make any sense when I tried to talk. I was restrained during this time. Thank God I do not remember any of this time. Fortunately I do not remember any of this.
I have had to relearn how to write and also to use my computer. As we came down the the end, a MRI was done. The Hope was that it would show a negative (or normal) result and it was not normal. Thought at this time, with me being older (77), was not necessarily bad but May mean future issues. Well, in March of 2023, it will be 7 years. since I was diagnosed.
As I mentioned earlier, the ‘Man upstairs’ has been with me all along. The truth is this that was with me during the good times as well as the times when you do not know where He is. He is with you more when you don’t see Him, or when you don’t feel Him. Sometimes those are the times He’s there when it’s the most difficult times of your life.