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Protocols ideas for brain mets (from NSCLC)

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Misscalcio
(@misscalcio)
Joined: 12 months ago
Posts: 2
Topic starter  

Dear all,

I need your ideas about my mum’s case. I found this forum several months ago but things got crazy and I did not have time to post.

I try to sum up her case: NSCLC adenocarcinoma diagnosed in Nov 2018 (pdl 2% and Kras Q61H mutation). 1st line carbo alimta did not work. 2nd line pembrolizumab did not work. 3rd line of Gemzar finally worked!!! And she could get radiation. In August 2020: 6 brain metastases diagnosed! She got CyberKnife, it seemed to work but they started growing again. So in August 2021 she resumed Gemzar. It worked on the BMs (15% reduction… which suggests her BBB is damaged because this drug is not supposed to penetrate) but she had an aplasia and a sepsis because of the chemo apparently. She almost died! 

Now she is bedridden (because once you spend time in the bed it is very hard to walk again) but she recovered quite well otherwise!

Her oncs don’t want her to resume Gemzar because of this adverse event! So she is now without any treatment for the BMs, in palliative care. And they won’t do reeducation for the legs because of that also (what’s the point they say).

Thanks for reading me so far (hard to sum up… ahha). So my question is basically:

What could she try?

Here are the leads I have:

  • Hydrogen inhalation (I purchased the Chinese machine and have it at home… but her return home is not happening until end of January)
  • THC/CBD: she already had some in the past (up to 40mg THC 100mg CBD and I think it slowed the biggest tumor but it did not produce a general regression at that time)
  • Silibinin: she had some Legasil after her CyberKnife (the mets treated shrunk but 2 new popped up so I don’t think it worked… but maybe the tumors changed in time… I don’t know)
  • I found a study about a product called Sun soup (mungo and mushrooms like shiitake) which no longer exists but which induced cancer regression even in the brain
  • DHA: one recent study invitro suggested it slowed tumor growth
  • Arginin: a study showed amazing results with wbrt and at high dosage
  • Melatonin
  • Boswellia

Any other idea is welcomed!

Well… as you can see I feel lost and desperate. She is not the type to try complements and I don’t want to harm her but at this point we have no choice! Daniel was kind enough to answer me a few months ago so I don’t want to bother him again and I believe in collective intelligence. All your inputs and ideas will be appreciated.

Thanks again for reading me!

Kind regards

Elsa


   
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johan
(@j)
Joined: 4 years ago
Posts: 1191
 

@misscalcio

Sorry to hear about your mom's situation. You mention she might not be motivated to try alternatives, so that limits her options. Does she like grapes? I'd recommend eating plenty of fiber (fruits and vegetables), also include some type III resistant starch and short-chain fructooligosaccharides, herbs and herbal teas, ginger, triphala, orange juice, kombucha, chlorella, kelp, walnuts.

I'd definitely take tributyrin (butycaps) 1 or 2 sachets a day. DHA. Vitamin d3. Carrot juice. Artemisinin. Honokiol. Metformin. Scutellaria baicalensis. Curcumin. Melatonin. Citric acid. Sulforaphane. Lycopene. Nicotinamide. Taurine. 

Start with the diet and butycaps and introduce other supplements gradually.

Ginseng for strength.

Best,

 

 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1191
 

As mentioned I'd start supplementing tributyrin (butyrate) and the dietary modifications and after a week start citric acid, 2 to 10 grams/day (0.05 to 0.1g/kg/day) with water and with meals (in 3 or 4 divided doses). Next, introduce the other supplements.


   
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Misscalcio
(@misscalcio)
Joined: 12 months ago
Posts: 2
Topic starter  

@j Thanks for your ideas Johan!

Well, when I said she is not the kind to take supplements, I meant that when she was on traditional treatments, she was reluctant to do so (and oncs here in France totally discourage you to do it).

Thanks again!


   
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johan
(@j)
Joined: 4 years ago
Posts: 1191
 
Posted by: @misscalcio

@j Thanks for your ideas Johan!

Well, when I said she is not the kind to take supplements, I meant that when she was on traditional treatments, she was reluctant to do so (and oncs here in France totally discourage you to do it).

Thanks again!

I know it's a struggle! 

I'd also look into phenylbutyrate and Ruta 6 (ref)

Bonne chance!


   
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JoshF1314
(@joshf1314)
Joined: 1 year ago
Posts: 4
 

IV Vitamin C
Colloidal Silver
Piperine
Perillyl alcohol (Dr. Clovis Orlando)
Clomipramine
Dichloroacetate
Escozul scorpion venom

There are several others.  Please let me know if you want more.


   
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