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    bmymom asked a questionNon-Hodgkin Lymphoma (NHL)

    Secondary CNS Lymphoma

    8 answers
    • mindyS's Avatar
      mindyS

      I am not familiar with secondary cns lymphoma but was first diagnosed with primary cnsl in 2008. high dose methotrexate treatment followed by consolidation achieved three years remission. after relapse in 2011 again had methotrexate, multiple high dose chemos, and bone marrow transplant, and am again in remission. don't know where you are but if possible would suggest getting to a major medical center that treats many cns lymphoma patients, like UCSF or Sloan Kettering. check out article in Blood Journal titled How I Treat Lymphoma by James Rubenstein (do google search for it and it should show up.) good luck and let me know if I can help.

      almost 5 years ago
    • bmymom's Avatar
      bmymom

      Thanks for sharing Mindy... glad to hear u r in remission, but unfortunate the first did not last... how was your condition diagnosed in the first place? what do you mean by "consolidation"? So far I have had 2 methotrexate chemo with my next one this Thursday. My doctor says we will continue these monthly for a year and will see, assuming remission can be achieved, if I can get a stem cell transplant to help prevent recurrence.the chemo have helped me regain mobility, but I was in such bad shape by the time they figured it out, I am still not normalized. I get dizzy a lot, still need the cane for balance, back still hurts enough I have to take meds...I get stronger each day, but it has been a month... at 38 and typically healthy, it has been rough being so ill... how do they monitor you for recurrence? Spinal taps?

      almost 5 years ago
    • mindyS's Avatar
      mindyS

      diagnosis is always tough - is so rare most doctors will never see it so don't recognize it. I had multiple brain tumors and cells in my eye so initial diagnosis (after running around the country for 6 months) was from eye biopsy. on relapse was diagnosed by brain biopsy. I am now monitored by brain mri and ocular oncology exam. consolidation is high dose chemo. again, really recommend finding an expert in the field.

      almost 5 years ago
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