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NHL Suggestions & Questions

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  • Karl Schwartz
    Greetings, I m new to this mailing list, but I must say how impressed I am with the level of investigation I find here. Our History: My spouse, Joanne, has nhl
    Message 1 of 2 , Apr 21, 1998
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      Greetings,

      I'm new to this mailing list, but I must say how impressed I am with the
      level of investigation I find here.

      Our History:
      My spouse, Joanne, has nhl - low grade small cell follicular.
      In Jan of 1996 she was advised to watch and wait. That was hard advice to
      take. We first tried diet changes and supplements, then tried Burzynski's
      antineoplaston therapy. The Burzynski therapy appeared to work for a while
      (34% reduction after 4 months), but one node in the pelvic area went in the
      opposite direction and changed grades. Since then, I've learned that
      Burzysnki's numbers for nhl are no so good when antineoplastons are used as
      a single agent. (10% responders, 50% stable) Burzynski fared better when
      he used small amounts of chemo agents and interferon with antineoplastons.

      Now Joanne is about to finish CHOP. We don't know the final results yet,
      but so far she has had a dramatic reduction, side-effects have been minimal,
      and her doctors anticipate remission.

      SUGGESTIONS:
      I believe the least toxic therapies (such as vaccines) should be developed
      quickly and applied early.
      We need to work harder and publicize statistics about nhl growth.
      We need to investigate and publicize nhl risk factors: rare meat,
      pesticides, dairy, sun exposure?
      Let get data from nhl patients: What they ate and were exposed to, and their
      family history etc.
      We need to publicize symptoms of nhl so patients can get help earlier.
      We must require cooperation among research scientists.
      We need to investigate reasons for nhl spontaneous remissions.
      We need to explore use/benefits/pitfalls of diet, herbs, supplements,
      exercise, meditation, prayer etc. If nothing else, these tools gave us a
      sense of control in a very scary time.

      QUESTIONS:
      Watch & Wait: When patients are advised to watch and wait, are they risking
      future bone marrow involvement?

      Chemotherapy do�s and don�ts: Should patients avoid all/some antioxidants
      during chemotherapy? Should patients exercise moderately?

      Relapse: How can nhl patients in remission reduce risk of relapse?
      Is there an expert consensus about the best approach to a relapse?

      Testing therapies: What do the experts think about Nagourney's approach of
      testing sample tumor with various treatment agents, and why?

      MAB standalone/radiolabeled: Can MAB therapy (such as Rituxan) be used
      successfully multiple times, or does its efficacy decrease with each
      treatment? Do these therapies have the potential to manage nhl for long
      periods of time?

      Best Second Therapy: If a relapse occurs shortly after first chemotherapy
      (CHOP), is it best to change the therapy?

      Heart damage during chemotherapy: Is there evidence that CoQ10 can protect
      the heart during chemotherapy, and not interfere with efficacy?


      Karl
    • VBradova
      In a message dated 98-04-21 16:16:18 EDT, you write: Karl, I love your suggestions. And welcome to the club. We need active spirits such as you! I want to
      Message 2 of 2 , May 2 8:14 PM
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        In a message dated 98-04-21 16:16:18 EDT, you write:

        Karl, I love your suggestions. And welcome to the club. We need active spirits
        such as you! I want to quickly respond to your questions -- my responses
        reflect an educated opinion of one person with NHL, that is all.

        >QUESTIONS:
        >Watch & Wait: When patients are advised to watch and wait, are they risking
        >future bone marrow involvement?

        Bone marrow involvement is a risk no matter what course we pursue, and a
        pretty common occurrence.

        >Chemotherapy do�s and don�ts: Should patients avoid all/some antioxidants
        >during chemotherapy? Should patients exercise moderately?

        Antioxidants are to be avoided in radiation treatment. Moderate exercise is
        good.

        >Relapse: How can nhl patients in remission reduce risk of relapse?
        >Is there an expert consensus about the best approach to a relapse?

        No data exists on this. Oncologists assume that we will relapse no matter what
        we do, and they have nothing to offer in the ways of advice.

        >Testing therapies: What do the experts think about Nagourney's approach of
        >testing sample tumor with various treatment agents, and why?

        Most conventional oncologists pooh pooh this. I think that this approach is
        not good at identifying therapies that will work, but can help with
        identifying drugs to avoid -- which in itself can be a big help.

        >MAB standalone/radiolabeled: Can MAB therapy (such as Rituxan) be used
        >successfully multiple times, or does its efficacy decrease with each
        >treatment? Do these therapies have the potential to manage nhl for long
        >periods of time?

        Yes, no (though each patient is different and it may in some, and yes.

        >Best Second Therapy: If a relapse occurs shortly after first chemotherapy
        >(CHOP), is it best to change the therapy?

        I would.

        >Heart damage during chemotherapy: Is there evidence that CoQ10 can protect
        >the heart during chemotherapy, and not interfere with efficacy?

        Mixed reports on this one. I am not sure whom to believe. If I were taking
        adriamycin, I would take it as insurance. (It is proven to be good for sore
        gums!)

        Best -- Vera
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