• Has anyone had experience with Methotrexate treatment for Non Hodgekins?

    Asked by glomoy on Tuesday, January 10, 2012

    Has anyone had experience with Methotrexate treatment for Non Hodgekins?

    I have Ocular NHL, and they are concerned that it will invade the Central Nervous system.

    8 Answers from the Community

    8 answers
    • KarenG_WN's Avatar
      KarenG_WN

      Hi glomoy,

      Just wanted to reach out and let you know that we have several people on WhatNext who are affected by NHL. You can read their journeys and reach out to them if/when you are ready. To search, click on "People," then on the left hand column you will see the search tool.

      I hope this helps and want you to know my thoughts are with you on your journey. We support you.

      Best,
      Karen

      over 5 years ago
    • Alya219's Avatar
      Alya219

      I had methotrexate for my NHL both by IV & Intrathecal (injected into the spinal fluid). Would be happy to share my experience with you.

      -Aly

      over 5 years ago
    • glomoy's Avatar
      glomoy

      Thanks Aly. I would like hear of your experience.

      over 5 years ago
    • Alya219's Avatar
      Alya219

      What would you like to know about it? It's hard to know where to start without knowing specifics. I also had methotrexate due to feared CNS involvement or relapse. :-)

      over 5 years ago
    • Amy's Avatar
      Amy

      Not personally, but I know two people who had it because their lymphoma turned into CNS lymphoma. There are so many types of NHL, if you are unsure about it, don't hesitate to go for 2nd opinion .

      over 5 years ago
    • glomoy's Avatar
      glomoy

      Thanks. I have ocular NHL which in some cases at time of originally diagnosed has it in the CNS - 93% do, i am part of the 7% who did not. There was talk initially about the use of Methtotrexate, but because my vision was going they opted to do radiation first. My first brain MRI yesterday was normal (treatment ended 11/17/2011), but the probability of this spreading to my CNS is in my mind, and just wondering what MTX made you feel and the side effects....i have my next brain MRI in April.

      over 5 years ago
    • Alya219's Avatar
      Alya219

      Methotrexate actually wasn't that bad. I had Pretty much no side effects from it aside from some minor nausea. I have heard of some people that had some more prominante side effects but it's becuse methotrexate can have high toxicity so they monitor you closely and really hydrate you. They also give a drug called lucovorin which my onc referred to it as the antidote for methotrexate. It sounds worse than it is, like I said aside from the minor nausea I felt fine. You don't loose your hair or have really any of the other side effects that most other chemo drugs cause. All in all it was easiest thing about my treatment. Hope that helped, if you want to know anything else please let me know!! :-) made me feel better that I had it cause I wanted a lower risk of CNS relapse.

      over 5 years ago
    • glomoy's Avatar
      glomoy

      Thanks Alya219.

      over 5 years ago

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    Read and answer more primary intraocular lympho (also called lymphoma of the eye) questions.  Also, don't forget to check out our Primary Intraocular Lympho (also called Lymphoma of the Eye) page.