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    mindyS wrote on JAYCC's wall

    sorry to hear about the diagnosis - agree is hard to get info as cns lymphoma is rare. I was treated with high dose chemo at UCSF by Dr James Rubenstein. when I relapsed three years later consulted with Lisa DeAngelis at Sloan Kettering in NY and did treatment (including autologous bone marrow transplant) at UCSF again. is 6 1/2 years since initial diagnosis and am cancer free, without ever having brain radiation. my advice would be to get to major medical center where they are familiar with treating this, as soon as possible. is still no standard treatment but was important to me to avoid brain radiation if possible. good luck and let me know if I can provide any more info. if you want to talk would be available. hasn't been any easy road but am healthy and no regrets.

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    mindyS asked a questionNon-Hodgkin Lymphoma (NHL)

    almost three years since I finished chemo hair is falling out again - has anyone experienced this?

    5 answers
    • lilymadeline's Avatar
      lilymadeline

      Hi MindyS,
      I hope that they figure it out soon for you! Please keep us posted!
      Take care! Lily

      over 2 years ago
    • cam32505's Avatar
      cam32505

      Also, have your thyroid checked out. It can cause hair loss if not working properly.

      over 2 years ago
    • Hoping4ever's Avatar
      Hoping4ever

      There are pills called Priorin . I think it is a German product. Check it out . It is an over counter pills , but u need to consult your doctor about the real cause for your hair loss first. Best of luck.

      over 2 years ago
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    mindyS wrote on chuntley's wall

    I did reply to your question as a comment - not sure where that will show up. I don't use this site very often as are not very many of us with this diagnosis. I am 58 yr old woman, post treatment, and doing very well. would be happy to provide any info I can.