Thursday 30 July 2015

MATIAS - cocktail profile

Hi everyone!

So, I guess I´ll be the first one publishing my cocktail here!  

I think it is very straightforward and easy to understand, so I´ll just clarify that the items in bold are actual drugs, while the other are -mostly- supplements.  About genistein, it´s in red because I think the dose might be low, so if anyone is taking it, I´ll like to hear your opinion.




I´ll like to add that, besides from the cocktail above, that I take everyday, I do the following activities, which are related to my GBM treatment:

  • monthly 5-day TMZ cycle (going for my 13rd cycle, and pretending to go up to the 24th).
  • 4 daily Perillyl alcohol inhalations (around 30-40 minutes each).
  • go to the gym twice a week.
  • do a massage occasionally.
  • follow a quite rigorous, very low-carb diet.

I´ll add some information about my own case here:

  • giant cell GBM
  • surgery on May 5th, 2014
  • 31-year-old when diagnosed (33-year-old now)
  • radiation + TMZ (SOC).
  • MGMT: positive.
  • IDH1: negative.
  • EGFR: positive (>90%,+++).
  • supplement cocktail started right away, with curcumin (added other supplements along the way).
  • drugs where added this year, progressively.

I´m looking forward to hearing what you guys and girls think about my cocktail, how it compares to yours and what else you do to fight GBM!

All the best,

Matias.


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14 comments:

  1. Stephen W30 July 2015 at 13:27

    Thanks Matias for being the first to post their cocktail! I'm excited about this cocktail profile project.

    One question though: was it possible to copy and paste the cocktail from the table into the actual text of your post? My thought was that if you make changes to your cocktail it would be easier to edit the text rather than to have to replace the old jpg image with a new one, but I guess you could do that too.

    Thanks again for getting us started with this.

    ReplyDelete
  2. Stephen W30 July 2015 at 13:54

    Your cocktail looks great Matias. What brand of curcumin do you use, as this makes a big difference?

    As you can see from my post above, Ben Williams recommended 50mg of genistein. I'm not convinced that genistein crosses the BBB sufficiently to be that useful, but on the other hand it probably doesn't hurt.

    ReplyDelete
  3. Matias30 July 2015 at 15:40

    Hi Stephen!

    Curcumin is very hard to get here in Brazil. I usually buy it from ebay, or ask a relative that goes to the States to bring some for me. I have being using Source Naturals Turmeric 1000, which is supposed to have 1g of curcuminoids for capsule, plus bromelaim and bioperine for better absorption. It was recommended by a very well known Brazilian oncologist that I met, who uses it.

    Anyway, I just bought Life Extension Super Bio Curcumin to try it out, which seems to be better and need a lower dosage to get the same effect, since Longvida products are more expensive and very hard to get from Ebay.

    To make things worse, for every packet I get here, I have to cash out the same money I paid to buy the products as taxes!

    Maybe I´ll up my genistein dose. I taking it after reading about genistein from B. Williams.

    Stephen, what´s your opinion about DIM?

    PS: it´s easier for me to just update the jpg :)
    PS2: I just deleted this same post to be able to subscribe to this post comments, which I forgot to do!

    ReplyDelete
  4. Stephen W30 July 2015 at 15:59

    Thanks for the information.

    My opinion on indole 3 carbinol and its metabolite DIM: I have seen it being effective in a mouse model of breast cancer, but I haven't seen it studied for brain tumors or in rodent glioma models. As with most drugs and supplements, I'd like to see evidence of it crossing the blood-brain barrier before I can enthusiastically recommend it for brain tumors (the exception to this is if a drug/supplement is expected to have indirect beneficial effects, for example on the immune system).

    ReplyDelete
  5. JudeGilford31 July 2015 at 18:02

    I like this format a lot, Matias. Do have one comment though. I think the Curcumin is to be taken before or between meals, not with meals. I don't know this would make a lot of difference, but wanted to mention as it's been one of the most confusing aspects of all this - when to take.

    ReplyDelete
  6. Matias31 July 2015 at 20:19

    Thank you for your insight, Jude!

    Actually, I take all those pills after eating. In the morning and noon, it´s about 20 minutes between the meal and the pill taking. At night, I usually take them before sleeping, so maybe 2 hours after dinner.

    How are you guys taking curcumin?

    ReplyDelete
  7. JudeGilford31 July 2015 at 20:29

    Will be good to hear how others take it. Chance takes about an hour before breakfast and dinner.

    ReplyDelete
  8. Stephen W1 August 2015 at 10:09

    I think the proper timing of curcumin depends on the formula. The Longvida product is a lipidated formula, and rodent studies have shown taking it on an empty stomach gives optimal bioavailability. Unformulated curcumin is probably better taken with meals or a source of fat, with piperine to increase bioavailability further.


    "For now, curcumin should be taken with a fatty meal—milk products, plant or animal fat sources are all handled the same way. I would suggest people who want to try it start on around 500-1,000 mg a day..." Greg Cole, 2005

    http://accelerating.org/articles/curcumin.html

    Below is a page from UCLA with information on the Longvida version of curcumin and how to take it.

    http://alzheimer.neurology.ucla.edu/Curcumin.html

    ReplyDelete
  9. Matias8 December 2015 at 04:03

    Just a little update on my situation. I´ve switched to Longvida curcumin, and have stayed on most of the supplements mentioned above.

    My last MRI, from 10 days ago, finally change a small suspicious spot status (that´s been there since surgery on April/14) from "possible residual tumor" to "most likely pseudo-progression"! After all that time it hasn´t changed much, only gotten somehow darker.

    My neuro says that, it most probably is just scar tissue from surgery or the effect of TMZ on the spot. If it were to be residual tumor, it´d definitely have grown in almost two years!

    So, as you might guess, I´m extremely happy!

    All the best!

    Matias.

    ReplyDelete
    Replies
    1. Stephen W8 December 2015 at 10:14

      That's great news Matias, glad to hear it!

      Delete
    2. Melinda Voicu8 December 2015 at 21:05

      good to hear this!

      best wishes to you!

      Melinda

      Delete
  10. JudeGilford8 December 2015 at 10:36

    I'm extremely happy for you, Matias! Way to go!!!

    ReplyDelete
  11. Michael W8 December 2015 at 11:03

    Fantastic news! Congratulations

    ReplyDelete
  12. Anonymous7 April 2016 at 15:02

    Matias, have you tried amazon? sometimes I find things cheaper on amazon. Specially since the real has been low for quite sometime now, it might be worth look into it. I get a good amount of supplements from pure encapsulations as I can get 30-50% off through our doctor. Where in Brazil are you from?

    ReplyDelete

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