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    User: J1817

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    TeamLollar wrote on J1817's wall

    Hello. Welcome to the site. I have a form of NHL. Let me know if I can be of help to you.

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    TeamLollar started following

    User: GayleK

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    TeamLollar wrote on GayleK's wall

    Hello! I just saw you on the website. I have a form of NHL. Let me know if I can be of help to you.

    2 Comments
    • GayleK's Avatar
      GayleK

      Thank you so much, TeamLollar. Just knowing there are folks out there is like a life line to hold on to. I appreciate your offer so, so much. Gayle

      over 3 years ago
    • GayleK's Avatar
      GayleK

      TeamLollar, I am new at this and without a definite diagnosis, but I am here for you.

      over 3 years ago
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    TeamLollar asked a questionNon-Hodgkin Lymphoma (NHL)

    Incurable

    18 answers
    • sewfine's Avatar
      sewfine

      I too have been recently diagnosed with Waldentroms and yes I become more confused everyday about what to say to others when they ask and don't understand. The hardest thing for me is getting comfortable with the fact that I can and hopefully will live with this for what I hope is a long time. I don't feel that there are many certain answers out there. Every answer seems to be "possibly" to most of the questions I ask. It is like living in a constant state of limbo. On the other hand I try to tell myself that I am here and relatively well considering and I have not had to start treatments yet. My life has not changed much physically (extreme fatigue is my only complaint) but emotionally I will never be the same. That is both good and bad. It is a constant challenge to find emotional peace and relaxation. But I know it is worth working at if I am going to have a chance at a good life for as long as possible.

      over 3 years ago
    • Schlegel's Avatar
      Schlegel

      Follicular lymphoma is also treatable but not curable. When I am in remission, I tell people that I am in remission and that it will come back. Some people are rather insistent that it might not come back and I should have faith or think positive. And I am adamant in letting them know that this disease will come back. Yesterday, I finally learned that I do not have breast cancer but the lymphoma is back. I told everyone the lymphoma is no longer a big deal.

      over 3 years ago
    • MamaRobina's Avatar
      MamaRobina

      Schlegel, The news we got about Follicular NHL is that it is easy to treat but HARD to cure and that it often recurs...not that it is totally, impossibly, always incurable. Research has shown me that, in some cases, it hasn't come back after years of remission. My Husband is a great believer in "mind over matter" and the body-brain-attitude connection. That is a provable thesis..not pseudoscience. Optimism, determination, contentment and laughter change the body chemistry and help our immune systems. If and when his cancer might recur, we are prepared but we are also equally prepared for no recurrence. This isn't us being unrealistic. It's us being positive and hopeful and knowing that great strides can be made in research and that no two people respond the same. We take great hope from the fact that after only two rounds of chemo, there was an 80% reduction in active cancer cells and the fifth round was, as his oncologist put it, "just for padding" because there was a 100% reduction, complete remission, after four rounds. His was stage IV. Yeah, the big butt-kicking thing is not real. But hope IS and that is something we refuse to relinquish.

      over 3 years ago