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

Hi, I would love to get in contact. I have a family member who has recently been diagnosed with CNS Primary Large B Cell Lymphoma and we are researching all forms of treatment.

Hi @clavallee2, I am in remission but had Large B cell CNS Lymphoma. I had three different treatments. I had Rutiximab which is a biologic for 8 treatments, high dose methotrexate which is an infused Chemo and Temodar which is an oral Chemo. The high dose Methotrexate had to be administered in the hospital which was a four day stay every time it was administered. I’d be happy to answer any questions you have about my experiences. I’m three years in remission this month. Two more years, and they call me cured.

Any update, @shellcat25? Did he have his consult?

Hello! We received a phone call from Mayo. He’s been approved!! Now waiting for Insurance to approve the consultation. Then we will run down to AZ. Very excited to this next step. Thanks for checking in.

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!