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

It took about one year to get full range of motion back.

PT started in Oct. 2021. So we are half a year into trying to get more independence. Using a cane in the house with me holding the weak , left arm is allowing my wife to walk to the kitchen, bathroom, bedroom. Ambulating a walker on a straight flat sidewalk is possible without support: the left had can hold on to it . After 30 min her left foot is not coming up properly. She needs a break. The risk of a fall his high and someone needs to be close all the time. Getting dressed is a challenge. The frozen shoulder has improved to an extent that getting out or in sweaters does not cause pain anymore. But lifting the left arm is not possible and thus dressing/showering/ bathroom is not possible without support. She now practices daily to pick up little pieces of plastic foam or corks.
The finger movements are limited.
She needs help 24/7 but .. the input we get from rehab physicians is similar to yours . Nerve regeneration takes time.

That must be exhausting for both of you. I'm sure she finds it hard to be so dependent on the help of others as well. Do you have others who give you respite?

Caregiving is a full time job. It includes nursing duties, nutrition & laundry services , and PT/ entertainment. But it can be done by a healthy partner.
Kids and friends as visitors have a positive impact on state of mind in general. Not spending too much time watching TV is a daily challenge.
In terms of regeneration after resolving the diffuse brain tumor/lesion the exercise regimen seems to be key for regaining some independence.
I read that the Mayo Clinic has a multifunctional team working on nerve regeneration mechanisms. It was mentioned that there is a very large patient base (stroke, MS, Parkinson, progressive palsy, etc) where nerve malfunction plays a similar role. The number of CNS lymphoma patients is relatively small. Is there a way of finding new rehabilitation methods? Probably not or they are in a clinical test phase . Our leading lymphoma institution has not brought it up.

Kippi, you can stay up to date on Mayo Clinic’s advances in regenerative medicine and nerve regeneration on this website:

Center for Regenerative Medicine https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/about

There is also contact information where you can ask about current studies.

My dad (just turned 66 a few days ago) had a seizure on 4/21/22 and was admitted to the hospital where they found a 1cm lesion deep in his temporal lobe. They did a brain biopsy on 4/27 where we received the frozen section results that confirmed B cell CNS lymphoma. He started high dose methotrexate on 5/4 inpatient with rituxan. He cleared the chemo after 5 days and they have him on oral temozolomide during outpatient (I believe 300mg for 5 days). He’s going back for his second round of chemo on Wednesday. I see some other people on here with similar diagnoses and I would just love to hear more stories, advice, what to expect. This is all so new and I’m trying to learn as much as I can, it feels like the only thing I can do aside from being there to support him. One thing I want to ask his doctor next is if they plan on doing a stem cell transplant, they haven’t mentioned anything about one but I see it being mentioned a lot for consolidation therapy. They’ve only said he has 7 rounds of the HDMTX and then 2 rounds of some other chemo that is apparently much worse than the HDMTX (I don’t recall him saying what it will be or at least I can’t remember). Thanks for anyone’s reply, I appreciate it!

I had the same treatment protocol as you mention, but many more than 7 rounds of high dose MTX. For the first several months, I want to say I was in the hospital every 2 weeks for four to five days depending how quickly the MTX passed. After doing every other week, I did every four weeks. The whole thing went on for eleven months. I was 55 when I was diagnosed, so slightly younger. I guess the biggest thing is that I was tired all the time. I think every medication I took either gave me constipation or diarrhea. They discussed a stem cell initially, but I responded really well to treatment. It was confirmed by a few different docs that it was not required, and they wanted stem cell as a back up in the event of reoccurrence. As a former patient, I recommend that you are there for him and be positive. The best thing I ever heard from Mayo was that this CNS NHL is curable, so I always knew in the back of my head I’d make it through despite how miserable I may have been on any particular day. Let him do for himself as much as he can as well. There is a lot I don’t remember because I was so very sick. My husband filled in many blanks for me. As a Cancer patient, i just wanted to feel normal and have people treat me normally and not pity me. I also felt guilty because my husband had to give up part of his life to help me. He never said a word about it, so it was a burden I placed upon myself. I know it was unfounded. I hit my five year mark in 2021. Good luck to you and your dad. Feel free to be in touch if you want to talk about anything more specifically.

The stem cell transplant is not used for patients above 65 and it depends on the physical condition.
My wife had an HDM-RVP treatment: 8 times for 4 days in hospital with 2 weeks in between the treatments . The methotrexate infusion lasts only 2 hours but the flushing takes 3 days to bring down the methotrexate level below 80.
(High dose Methotrexate, Rituximab, vincristine, procarbazine)
She was given anti nausea medication (Zofran) but did not need it.
After 4 treatments a brain MRI was taken and it showed a complete response to the therapy. No lesions visible anymore.
She then was given a break of 1 month and thereafter started the outpatient consolidation therapy ( to prevent short term relaps) with cytarabine: 2 infusions (2hours)with 2 weeks in between them. Steroids are added to reduce the neurotoxicity. Every 3 days a blood draw is taken to monitor blood counts and platelets. My wife had to get a platelet transfusion once because levels had dropped to very low levels after a week of the first cytarabine infusion(risk of internal bleeding). The treatment had a negative impact on motor skills/ gait-balance). Fall risk!
The treatment is followed up by ‘expectant observation’ with contrast MRI every 2 months with probably reduced frequency after a year without recurrence.

There is not much information on progression free survival. I saw randomized trial data which indicated 5 years on average.
Oncologists are careful using the term cured.

That is a helpful summary of your illness history. Encouraging without downplaying the challenges.

2 questions:
1. did you experience nausea or diarrhea after the finalization of the chemotherapy? If yes , what supportive measures were taken?
2. Did the CNS lymphoma effect your leg and hand functioning? If yes did Physiotherapy alone improve your condition and how long did it take to partially or even fully recover?

I also received Zofran after the MTX. I was on many medications including an antibiotic and an antiviral medication. I think it was the combo of the medicines and you never knew how your body would react. I can’t recall how many days after the MTX, I had to do the oral chemo (Temador). My body was already worn out, and it was just a pile on top of that. OTC meds such as Imodium -D and Metamucil.

I was highly impacted after my brain biopsy. I could not hold a sandwich, use utensils and listed to the left when I would walk. While at Mayo, I had both OT and PT. Everything cleared up with time. If you met me today, you’d never have a clue that I had been so sick. I will say after my almost year of treatments, I had to work on balance a lot. I started with a personal trainer that helped me immensely after I was done receiving treatments.

I did want to comment on something @kippi1950 said about oncologists not using the word cured. At Mayo, they did use the word cured. After being at Mayo, I had to return to my home state and receive treatment by a doctor Mayo conferred with in advance of my return. At my 5 year appointment, she said that you are only cured when you die of something else. I now just say I hit my 5 year mark of being Cancer free. I do think I’m cured of CNS Lymphoma. It’s clear to me that I could develop any other kind of Cancer as anyone can. After you spend a ton of time in the hospital and at a Cancer Center, it’s apparent that Cancer does not discriminate.