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DiscussionAnyone diagnosed with Primary Central Nervous System (CNS) Lymphoma?
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Replies to "My dad (just turned 66 a few days ago) had a seizure on 4/21/22 and was..."
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.
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.