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Wednesday, 22 August 2018

Mom's Cocktail (Updated)

My mom was diagnosed with GBM, had a resection, and this is her treatment while on radiation/chemo.

Age 62
Weight 87 kg (191.8 lbs)
Height 176 cm (5 feet 9 inches)


Radiotherapy Medication
Morning
Afternoon
Evening
Notes
Granisetron 1mg

1
1h before TMZ

​Sildenafil 50mg
1
1/2
With TMZ and Celebrex
Temozolomide 140mg
1
​1h before RT
Celebrex 200mg
1
1
Anti inflammatory 
Boswellia 400mg
3
4
4
Anti inflammatory 
Valproic Acid 500mg
2
​2
​Metformin 1000mg
1/2Lowers blood glucose
Omeprazole 20mg
1
​1
​Hidroxychloroquine 200mg
1
1
Not Chloroquine yet
Curcumin 500mg
2
2
2
Not Longvida yet
Melatonin 5mg

​4
​Probiotic
1
Multivitamin
1


​Alfacalcidol 0.5mcg
1
2
1
​Vitamin D 2000UI
1
1
​Selenium 200mcg
1
Sulforaphane 50mg
2
2
2
Maitake 650mg
1
1
THC vape
​1
1
30m before RT
CBD oil 10% drops
4
6
4
1h before RT
Omega 3 2000mg
1
1
MCT oil tablespoon
1

​For ketosis
Ketogenic diet & Intermittent Fasting


​First meal 3 PM (after RT)
Wim Hof MethodBreathing exercises 

We'll be adding the following as soon as we get the order in:

  • Berberin pure powder 1g/day
  • Ashwagandha 2g/day
  • Pterostilbene 250mg/day
Anything important we should add/change? Thank you guys!

13 comments:

  1. Hi paul,

    Welcome to the Blog. It looks like a pretty comprehensive cocktail, and probably not many critical things missing. A couple of comments perhaps:

    - Have you thought about adding Chloroquine? It can work as a chemo / RT sensitizer
    - Sulforaphane: I believe the 100mg / kg in this study refers to a mouse model. My understanding is that you need to divide this dose by 12.3 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4804402/), so this dosage would convert to ca. 700mg daily for your mom. Anyone, please correct me if I am wrong.
    - I would consider adding a good probiotic, with high CFU count and many different strains. It helps the immune system
    - You could consider more mushroom supplements. E.g. PSP/PSK, Reishi
    - What kind of Curcuma are you using. Bioavailability is key here. Most of us take Longvida as its been proven to cross the blood-brain barrier.However, there are other options:

    https://www.superfoodly.com/best-turmeric-curcumin-supplement/

    I wish your mom the best of luck with her cocktail!

    Best,
    John


    ReplyDelete
    Replies
    1. Hi John. Thank you for the great response!

      - Literally just got back from the pharmacy where I managed to get hydroxychloroquine. Putting her on 400 mg daily. It is Plaquenil, hope it does the job.
      - Great idea with the probiotic. Will do!
      - Will add the PSP/PSK as well.
      - The Curcumin product is this: https://www.amazon.co.uk/gp/product/B01AS39QB2

      About the Sulforaphan dosage, I would appreciate if someone helped me make more sense of it.

      Best of luck to you as well John!
      Paul

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    2. Hi Paul,

      The bioperine in your Curcuma supplement helps with bioavailability, but as mentioned, most here are on Longvida due to the clinical evidence on crossing the BBB. One option is this one, in case you are interested:

      https://www.amazon.co.uk/Longvida-Optimised-Curcumin-Increased-bioavailability/dp/B01NCTQFL8/ref=sr_1_2_s_it?s=drugstore&ie=UTF8&qid=1535026083&sr=1-2&keywords=longvida

      I'm personally taking Curcuma golden paste (i.e. home made mix of curcuma powder with pepper & coconut oil) + Longvida + Theracurmin.... a bit overkill perhaps, but I wanted to be sure it works as it's got really great evidence for it's anti-tumor & immune activity.

      Coincidently, for Sulforaphane I wrote a brief review not too long ago here on the blog, see:

      http://btcocktails.blogspot.com/2018/06/sulforaphane-easy-and-potentially-very.html

      I'm personally currently on ca. 100mg bid in supplement form, + around another ~100mg daily from broccoli sprouts. However, there are not many studies out there on the right dosage, so it's anyone's guess. I believe some human studies have used around 90mg daily, total.

      Best,
      John

      Delete
    3. Just saw you already had already posted on that thread, so nevermind.

      Delete
    4. I would never use a mouse study to try to determine a human dose. Different species have very different rates of metabolism and body surface area, and a very small species like a mouse requires a very different dose from a human, per unit body weight.

      However, for very rough approximations there is a method called "allometric scaling".

      The general rule of thumb is to multiply a mouse dose (in mg/kg) by 0.081 (or divide by 12.3, as John mentioned, which is the same thing) to get the human dose in mg/kg. So as John correctly mentioned, 100 mg/kg for a mouse would convert to 8 mg/kg for an adult human.

      This is only a very approximate estimation however, and it would vary from drug to drug. More details on allometric scaling here:

      http://sci-hub.tw/https://www.fasebj.org/doi/pdf/10.1096/fj.07-9574LSF

      Delete
    5. I am closely following your comments and lists and would greatly appreciate any help. It is wonderful to see an active community surrounding GBM. My husband (48) was recently diagnosed with GBM, had a complete resection and begins TMZ and radiation in 9 days. I am overwhelmed with the variety of cocktail lists and what we need to have on day one of treatment. Doctors of course were not open to this approach but we are pursuing anyway. How did you finalize lists? obtain meds? determine doses? I have of course read Ben Williams' book and web site. Would appreciate suggestions for those of you longer on this journey. Links to lists? Warnings before we get started? Thank you all so much in advance.

      Delete
  2. Hi Paul,

    One comment is maybe to review the usage of sildenafil. 50mg once a day is a more typical dosage. Also more importantly you list it as morning and evening with TMZ taken in the afternoon. I'm assuming you are taking sildenafil to enhance chemo by increasing BBB permeability. So to do that I'd think you'd want to match up the time of peak plasma. They both have roughly the same time to Cmax, so would seem more logical to take sildenafil at the same time as tmz, or maybe an hour later.

    ReplyDelete
  3. Hi, thanks for the response!

    I read in Stephen's spreadsheet about sildenafil 20mg twice daily. https://docs.google.com/spreadsheets/d/1oGo50LeemE7-tRlkxraA85waGAM6sPLdhpflH4n2tzA

    My intended purpose for it was to enhance the Celebrex by increasing the BBB permeability, I know there is research on this topic... So she's taking it together with Celebrex.

    Did not know the TMZ had problems reaching the brain, or that it would be enhanced by sildenafil. Any research on that?

    ReplyDelete
    Replies
    1. The 20 mg twice daily is what I would do if using it for effects on immune cells, as tadalafil was used a couple trials in head and neck cancer.
      https://www.ncbi.nlm.nih.gov/pubmed/25320361

      If using it for affecting the blood brain barrier I would use the higher dose at once, more stragetically timed, as bs1966 suggested.

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    2. What dose would you use Stephen?

      Delete
  4. Stephen, I changed the Sildenafil to a 50mg dose in the afternoon, with the TMZ and Celebrex, one hour before RT.

    I also put her on Boswellia 4400mg daily and took her off the steroids. She was on 24mg/day Methylprednisolone. Is this safe while on RT?

    Would appreciate any feedback on the updated cocktail.

    ReplyDelete
    Replies
    1. The 50 mg single dose taken with TMZ and Celebrex makes sense if the intention is to improve BBB permeability. For erectile dysfunction, single doses up to 100 mg can be given, so you could consider even higher doses than 50 mg (but check to make sure she's not hypotensive at baseline, because sildenafil lowers blood pressure). Your cocktail is extensive, so I would do any dose escalating of any of the drugs cautiously and gradually.

      I have some reservations about long-term sildenafil use, on the basis of the study mentioned in this post:
      https://btcocktails.blogspot.com/2017/01/re-evaluating-sildenafil-viagra-in-gbm.html

      But pulsed doses during chemo is probably okay.

      What brand of Boswellia? Special formulations of Boswellia can probably give the same effect with lower doses.

      Is it safe to go off corticosteroids during radiation? It depends if cerebral edema is problematic or not. My friend got through radiation without the need for steroids (and she was taking Boswellia and curcumin). But if edema becomes a problem, even with supplements, she may need to go back on steroids.

      Delete
    2. We're using this Boswellia: https://www.amazon.de/gp/product/B00FA111OI
      I now see that the one used in the study has 85% boswellic acid and ours has 65%. Will increase the dose. I found out about WOKVEL only recently. You think it is better?

      Delete