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

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@mepowers

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.

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Replies to "I had the same treatment protocol as you mention, but many more than 7 rounds of..."

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?