Sunday 15 November 2015

Low Grade and Stable

I've asked this in multiple places and struggled with this for a while. So forgive me if you've seen and already replied either on the CC board or brain trust email.  I have oligodendroglioma with 1p/19q deletions, IDH1 mutation, CIC mutation, and TP53 mutation (this one is a mystery). I have residual tumor from 2010 surgery. Did radiation and Temodar in 2011 with no visual reduction. I've been stable for 5 years. Over that time I've experimented with Zinc, Curcumin, PSK, Cimitadine, D3, Metformin, low sugar diet, Melatonin, green tea extract, etc. I know many of these are benign, but I'm feeling like cutting back. First, this is a little pricey to do long term when unsure of benefit. Second, though I like to be proactive, I kind of just want to simplify and stop looking for whatever I can do and just enjoy being stable. Third, when/if recurrence happens I don't want to minimize the benefits of some of these because I took them all this time. As far as other meds, I'm taking Lamictal and Vimpat for my auras. Just looking for any feedback.
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6 comments:

  1. Stephen W17 November 2015 at 13:05

    I understand where you're coming from Danny. My friend is in the same boat, coming up to 2 years since the end of chemotherapy. It's difficult to know how proactive to be and how much is too much. My feeling is that the curcumin, PSK, D3, melatonin, and low sugar diet is a good maintenance plan.

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    Replies
    1. Danny Mercer25 November 2015 at 16:32


      What do you think of these dosages?
      Curcumin 1000mg pm
      Melatonin 5mg pm
      D3 10000 iu: am
      Low sugar: huge cheater
      Ritalin LA: 40mg am
      Lamictal 100mg bid
      Vimpat 20mg bid
      Grace and peace,

      Danny

      Delete
    2. Stephen W25 November 2015 at 16:36

      What brand of curcumin do you use?

      I use 10 mg melatonin at night myself (to help sleep), as I find 5 mg doesn't do much for me.

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    3. Danny Mercer25 November 2015 at 20:32

      ProHealth Otimized Curcumin Longvida 500mg

      Delete
  2. Danny Mercer17 November 2015 at 18:11

    Thanks Steven. I appreciate it.

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  3. Matjaz18 November 2015 at 01:45

    Yes Steven, you da man :D

    I think we mentioned in some other post that metformin is also good for long-term maintenance? Also, I read metformin has same effect as berberine (found in goldenseal root for example), so why most people take/prefer metformin?

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