CNS Lymphoma

That’s great news! I’m happy to hear she’s taking to treatment well and the tumor is shrinking. That’s the best news we could hear. My dad didn’t have too much trouble through treatment but it definitely takes it’s toll on stamina/energy, he now still gets tired quicker than before. From what I’ve read it’s very common and it will just take awhile post-treatment to feel better and more like yourself. The MTX really does a number on the body. My dad actually has a 7 month post-treatment MRI tomorrow, so send some good juju out into the universe for him! I’m keeping your mom in my thoughts for continued good news and to have her feeling better soon. Regards!

Definitely sending all the good vibes your way for the best results tomorrow. How nerve-wracking that must be! And thank you, again, for taking the time to help us get on the right track with treatment. I consider it pretty miraculous that we were able to connect in a timely fashion with something so rare. All the best to you and your dad! Keep me posted if you’re up for it. 

You are very welcome! PCNSL kind of took over my thoughts for the last year and even though my dad is in remission I still find myself googling it every now and then, probably hoping for some miraculous cure or leap in medicine so no one has to go through this in the future.  I’m glad that my googling could at least lead me to help someone else navigate it. I’ll follow up with NED (no evidence of disease) news soon! Have a good evening.

Hey Suzie,

I wasn’t expecting to see results so soon but his initial MRI results came back as No evidence of recurrent disease. Fantastic news! I hope for you to hear the similar soon. Keep me updated on your mom, I’ll try to check in a couple months

Amazing, wonderful, incredible news!! Thanks for the update! Best wishes for continued good health for your dad. I will send an update on mom once she gets her next MRI. Take care!

Suzie, how is your mom doing? I’m hoping for good news. 

Hi, Jenn! I'm so very sorry I haven't replied sooner. I kept thinking of it, then life would distract me. Anyway, Mom is doing well!!! She is now 1 yr. post-treatment, and has just "graduated" from follow-up MRI's every two months to every three months. All her imaging has shown NED. We are so grateful. 

She did end up with some neuropathy/numbness in her feet which she still struggles with, but therapy helped some and I think she's mostly just gotten used to it. Her memory isn't what it used to be, but she's also 82, so that could just be part of the aging process, as well. Her energy/stamina is also not what it used to be, but it was pretty high to begin with so it was a pretty high bar to try and get back to! For the most part, she is back to her regular schedule of (many) activities. 

Thinking of you and your dad and hoping he continues to do well!

Suzie, I’m so glad to see your update! I’ve checked in here and there hoping to hear she is doing well. Sorry to hear about her troubles post-chemo, but a small price to pay! My dad is doing well, still plugging along in remission. He has some short term memory problems and still doesn’t have his old stamina back but I suppose that’s just the new normal. I’m just glad to have (many) more years with those we love. Truly so happy to hear about your mom’s success!! Thank you for updating me. Be well!

Wonderful to hear that your dad continues to do well. Yes, I know my mom gets very frustrated with her memory and stamina, but, as you say, it really is a small price to pay considering how things could have turned out. We continue to be so grateful that you took the time to reach out to me back when we were in the thick of it and looking for guidance. You get an extra halo and two sets of wings!!