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Glioblastoma Protocol Feedback

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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

Hi Guys - my mom has been diagnosed with GBM wild type and I am trying to figure out the optimal protocol. She already had a resection,
(GFAP positive, SYN negative, NFT - negative in tumor, positive in some rare neurons included in proliferation, K67 - 20% positive, Cd34 positive in vessels)
She is finishing chemo/radiation on Friday. 

Please find the protocol we are planning to transition post chemo. Combination of CoC/Low PH strategy.

Questions
1. Any feedback on this? There are a lot of pills -if there is anything redundant or missing - would appreciate feedback!
2. Based on the tumor composition - anything specific I need to include/plan for?
3. I know there are some Romanians on the forums(@Daniel ?) - any ideas for oncologists in Bucharest who would be open to different strategies? I found one who is open/knew
about the COC protocol but would appreciate some more suggestions.

Medications:

1. doxycycline tbd mg
2. mebendazole tbd mg
3. medformin 1000mg
4. atorvastatin tbd mg

5. Amiloride 10mg
6. Acetazolamide 250mg
7. Omeprazole 40mg/day

Supplements

vitamin D 10000IU
Melatonin 20mg
Resveratrol 1000mg
berberine 2X 500mg
Aswaganda 500mg
Selenium 800mg (stop outside radiation/chemo?)
Quercetin 5g
Curcumin 4g
Acid alpha lipoic 600mg
EGCG 700mg- (the integrative doc advised this dose that seems low - any known side effects for higher doses?)
Honokiol + Magnolol 2400mg
Boswellia 800mg
Bromelain 750mg
omega 3 360 mg DHA
Shark Liver Oil 500mg

Thanks!

Alex

This topic was modified 2 months ago 2 times by loco0000

   
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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

forgot to mention that she's on a low carb diet, with intermittent fasting - 8:16. Would have liked her on ketogenic but she's 72 and hard to implement. 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 

@loco0000 

Hi, sorry to hear of your mom's situation.

I see a lot of good supplements on your list, I don't know if you've seen my page on the recovery of my father-in-law from Glioblastoma, here it is in case you haven't:

https://synergiesforcancertreatments.blogspot.com/p/17-year-glioblastoma-survivor.html


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

forgot to mention that she's on a low carb diet, with intermittent fasting - 8:16. Would have liked her on ketogenic but she's 72 and hard to implement. 

I don't think you need to have her on a ketogenic diet. 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

EGCG 700mg- (the integrative doc advised this dose that seems low - any known side effects for higher doses?)

Green tea extracts have about 50% of EGCg. 

Clinical trial: Perioperative Administration of Oral Green Tea Extract/Milk Thistle Extract to Colorectal Cancer Patients Undergoing Colorectal Cancer Resection, a Phase 1 Study.
Estimated Study Completion Date: November 2022
Green Tea Extract: 3,200 mg per day. Milk thistle extract with phosphatidylcholine: 2,700 mg per day.


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

 

Medications:

3. medformin 1000mg

Note that using METFORMIN together with anti-inflammatory medications (celecoxib or similar) may increase the risk of a rare but serious and potentially life-threatening condition known as lactic acidosis. 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

Acid alpha lipoic 600mg

consider taking it with Hydroxycitrate


   
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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

@j thanks for the feedback. Out of curiosity why do you think ketogenic is not needed? i thought it would help with the glucose management.

 

Regarding your father in law- i am happy to hear to he's still remission and lomustine and tamoxifen worked for him and he used relatively few supplements.  I am a bit thrown off by  tamoxifen bc there were quite a few studies where it wasn't effective but it seems popular on this forum.

 


   
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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

@daniel - I imagine you are super busy - but if by chance you have any leads on an oncologist in Bucharest, man I would be so grateful. and ofc your feedback on the treatment would be amazing also 🙂


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

@j thanks for the feedback. Out of curiosity why do you think ketogenic is not needed? i thought it would help with the glucose management.

 

First of all the obvious, my fil didn't do keto, and there aren't that many 20 year survivors from recurrent gbm. Ben Williams, another LT GBM survivor didn't either. Undoubtedly, Keto dieting isn't essential to cure a glioblastoma. If you know of people who've done well on it (alive 5+ years after dx) please do share here.

And here on the forum, we haven't heard of many successes with the keto diet, probably the opposite is true. 

 

 

 

 

 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

I am a bit thrown off by  tamoxifen bc there were quite a few studies where it wasn't effective but it seems popular on this forum.

 

Ben Williams took tamoxifen too. Of course he took it in combination with other drugs, as did my fil. It's the efficacy  combinations one should look at. There's quite a lot of research showing the benefit of antiestrogenic compounds in the treatment of cancer, not just breast cancer.

 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157

   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

Please find the protocol we are planning to transition post chemo. Combination of CoC/Low PH strategy.

Questions
1. Any feedback on this? There are a lot of pills -if there is anything redundant or missing - would appreciate feedback!
2. Based on the tumor composition - anything specific I need to include/plan for?
3. I know there are some Romanians on the forums(@Daniel ?) - any ideas for oncologists in Bucharest who would be open to different strategies? I found one who is open/knew
about the COC protocol but would appreciate some more suggestions.

Medications:

1. doxycycline tbd mg
2. mebendazole tbd mg
3. medformin 1000mg
4. atorvastatin tbd mg

5. Amiloride 10mg
6. Acetazolamide 250mg
7. Omeprazole 40mg/day

Supplements

vitamin D 10000IU
Melatonin 20mg
Resveratrol 1000mg
berberine 2X 500mg
Aswaganda 500mg
Selenium 800mg (stop outside radiation/chemo?)
Quercetin 5g
Curcumin 4g
Acid alpha lipoic 600mg
EGCG 700mg- (the integrative doc advised this dose that seems low - any known side effects for higher doses?)
Honokiol + Magnolol 2400mg
Boswellia 800mg
Bromelain 750mg
omega 3 360 mg DHA
Shark Liver Oil 500mg

Thanks!

Alex

Vitamin B3

https://www.inverse.com/mind-body/study-common-vitamin-potential-glioblastoma-treatment
https://cumming.ucalgary.ca/news/researchers-study-vitamin-b3-potential-treatment-deadly-brain-tumour
https://www.nature.com/articles/d41573-020-00063-7

 


   
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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

@j i know only of 2 cases of keto and long term survival :

https://www.youtube.com/watch?v=19NNXaVExlA

and the pablo kelly guy who Thomas Seyfreid mentioned a few times . But he eventually switched to carnivore diet. 

also this lady is interesting also - she was stage 4 but not gbm 

https://www.youtube.com/watch?v=sjLzQ2oK3Sw

 


   
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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

@j thanks for the b3 suggestion - do you think it works only during chemo or outside the chemo days also?


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

@j i know only of 2 cases of keto and long term survival :

https://www.youtube.com/watch?v=19NNXaVExlA

and the pablo kelly guy who Thomas Seyfreid mentioned a few times . But he eventually switched to carnivore diet. 

also this lady is interesting also - she was stage 4 but not gbm 

https://www.youtube.com/watch?v=sjLzQ2oK3Sw

 

Thanks for sharing!  


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

@j thanks for the b3 suggestion - do you think it works only during chemo or outside the chemo days also?

In theory, I think it can work outside the active treatment 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

I found one who is open/knew
about the COC protocol but would appreciate some more suggestions.

Medications:

1. doxycycline tbd mg
2. mebendazole tbd mg
3. medformin 1000mg
4. atorvastatin tbd mg

5. Amiloride 10mg
6. Acetazolamide 250mg
7. Omeprazole 40mg/day

Supplements

vitamin D 10000IU
Melatonin 20mg
Resveratrol 1000mg
berberine 2X 500mg
Aswaganda 500mg
Selenium 800mg (stop outside radiation/chemo?)
Quercetin 5g
Curcumin 4g
Acid alpha lipoic 600mg
EGCG 700mg- (the integrative doc advised this dose that seems low - any known side effects for higher doses?)
Honokiol + Magnolol 2400mg
Boswellia 800mg
Bromelain 750mg
omega 3 360 mg DHA
Shark Liver Oil 500mg

Thanks!

Alex

Phenylbutyrate.

If you're in the US you might get the cost covered by insurance, I doubt Aetna is the only company that considers it meets all their effectiveness criteria for glioblastoma.

https://www.aetna.com/cpb/medical/data/200_299/0240.html


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

would appreciate some more suggestions.

Medications:

1. doxycycline tbd mg
2. mebendazole tbd mg
3. medformin 1000mg
4. atorvastatin tbd mg

5. Amiloride 10mg
6. Acetazolamide 250mg
7. Omeprazole 40mg/day

Supplements

vitamin D 10000IU
Melatonin 20mg
Resveratrol 1000mg
berberine 2X 500mg
Aswaganda 500mg
Selenium 800mg (stop outside radiation/chemo?)
Quercetin 5g
Curcumin 4g
Acid alpha lipoic 600mg
EGCG 700mg- (the integrative doc advised this dose that seems low - any known side effects for higher doses?)
Honokiol + Magnolol 2400mg
Boswellia 800mg
Bromelain 750mg
omega 3 360 mg DHA
Shark Liver Oil 500mg

Thanks!

Alex

 L-ornithine-L-aspartate 

protective effect on the development of encephalopathy and brain edema

https://pubmed.ncbi.nlm.nih.gov/10462368/


   
ReplyQuote
johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

Hi Guys - my mom has been diagnosed with GBM wild type and I am trying to figure out the optimal protocol. She already had a resection,
(GFAP positive, SYN negative, NFT - negative in tumor, positive in some rare neurons included in proliferation, K67 - 20% positive, Cd34 positive in vessels)
She is finishing chemo/radiation on Friday. 

Please find the protocol we are planning to transition post chemo. Combination of CoC/Low PH strategy.

Questions
1. Any feedback on this? There are a lot of pills -if there is anything redundant or missing - would appreciate feedback!
2. Based on the tumor composition - anything specific I need to include/plan for?
3. I know there are some Romanians on the forums(@Daniel ?) - any ideas for oncologists in Bucharest who would be open to different strategies? I found one who is open/knew
about the COC protocol but would appreciate some more suggestions.

Medications:

1. doxycycline tbd mg
2. mebendazole tbd mg
3. medformin 1000mg
4. atorvastatin tbd mg

5. Amiloride 10mg
6. Acetazolamide 250mg
7. Omeprazole 40mg/day

Supplements

vitamin D 10000IU
Melatonin 20mg
Resveratrol 1000mg
berberine 2X 500mg
Aswaganda 500mg
Selenium 800mg (stop outside radiation/chemo?)
Quercetin 5g
Curcumin 4g
Acid alpha lipoic 600mg
EGCG 700mg- (the integrative doc advised this dose that seems low - any known side effects for higher doses?)
Honokiol + Magnolol 2400mg
Boswellia 800mg
Bromelain 750mg
omega 3 360 mg DHA
Shark Liver Oil 500mg

Thanks!

Alex

The COC protocol study with glioblastoma patients showed improved 2-year survival but after that survival declined quite rapidly. I do have doubts about the results as I suspect selection bias could have been a factor.  I don't know if medicines #5 6 and 7 are now part of the COC protocol, when I looked at it it had the first 4.

 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157

   
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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

@j thanks for this Johan. the tricky part is that i don't know of any protocol that has better results in group settings- do you? yes there are outliers like your father in law and few cases here and there - but I am not aware of smth better.

The CoC protocol also has similarities to @daniel 's strategy to reduce fermentation and respiration:

COC plus Canagliflozin and Diclofenac plus supplements (Berberine, Quercetin, EGCG, OMEGA3)

https://www.cancertreatmentsresearch.com/shutting-down-the-power-house-of-cancer-a-strategy-to-fight-cancer/

 

The second part of the protocol is aligned with @daniel 's strategy to reduce PH:

https://www.cancertreatmentsresearch.com/ph-cancer-a-top-treatment-strategy/

5. Amiloride 10mg
6. Acetazolamide 250mg
7. Omeprazole 40mg/day

All these drugs had good effects on GBM, and @daniel 's strategy looks like an organized way to attack this. What do you think?


   
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Daniel
(@daniel)
Admin
Joined: 7 years ago
Posts: 1147
 
Posted by: @j

Brain Cancer
https://www.cancertreatmentsresearch.com/brain-cancer/?highlight=glioblastoma

Daniel on COC protocol
https://www.cancertreatmentsresearch.com/drug-cocktail-that-could-double-the-average-survival-time/?highlight=glioblastoma

Glioblastoma search on this site:
https://www.cancertreatmentsresearch.com/?s=glioblastoma

Hi Johan,

There is one other way to search for keywords, within the forum section, using the small blue lens at the top. Using that search option, you woudl get this link https://www.cancertreatmentsresearch.com/community/?wpfs=Glioblastoma

Kind regards,

Daniel


   
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Daniel
(@daniel)
Admin
Joined: 7 years ago
Posts: 1147
 

@loco0000 

Hi Alex,

The best clinic I know in Romania is Imunomedica, which I think it is one of the largest integrative in Europe given all the treatment options they have available.

Regarding the list of supplements and repurposed drugs, in addition to the response from Johan, we could have a call sometime and go through that. For now, I woudl suggest to only use Amiloride under medical supervision since it can affect blood potassium level.

Another good idea is to write a comment and include Manuel who took care of his mom with Glioblastma for many years, using various treatment options he could implement at home.

Kind regards,
Daniel 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 

 

Another good idea is to write a comment and include Manuel who took care of his mom with Glioblastma for many years, using various treatment options he could implement at home.

Kind regards,
Daniel 

@manuel


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @j

 

Another good idea is to write a comment and include Manuel who took care of his mom with Glioblastma for many years, using various treatment options he could implement at home.

Kind regards,
Daniel 

@manuel

sorry, it's @manuone


   
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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

@daniel Thanks Daniel - I was using Imunomedica also - so good to see that we are on the same page there. A quick call would be so helpful and amaznig. What's the best way to coordinate - you have my email from the site? thanks again! Alex


   
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loco0000
(@loco0000)
Joined: 2 months ago
Posts: 13
Topic starter  

@j Thanks for linking it Johan. Manuel - if you have a minute to opine/provide feedback, it would be great. Thanks! 


   
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johan
(@j)
Joined: 4 years ago
Posts: 1157
 
Posted by: @loco0000

@j thanks for this Johan. the tricky part is that i don't know of any protocol that has better results in group settings- do you? yes there are outliers like your father in law and few cases here and there - but I am not aware of smth better.

The CoC protocol also has similarities to @daniel 's strategy to reduce fermentation and respiration:

COC plus Canagliflozin and Diclofenac plus supplements (Berberine, Quercetin, EGCG, OMEGA3)

https://www.cancertreatmentsresearch.com/shutting-down-the-power-house-of-cancer-a-strategy-to-fight-cancer/

 

The second part of the protocol is aligned with @daniel 's strategy to reduce PH:

https://www.cancertreatmentsresearch.com/ph-cancer-a-top-treatment-strategy/

5. Amiloride 10mg
6. Acetazolamide 250mg
7. Omeprazole 40mg/day

All these drugs had good effects on GBM, and @daniel 's strategy looks like an organized way to attack this. What do you think?

You're right, if we can take the outcome of the study using the COC protocol at face value, then it's definitely a good option. And considering the additions, this approach looks promising. 

 


   
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Manuone
(@manuone)
Joined: 4 years ago
Posts: 157
 

Hi, I am sorry for the challenges with your mother in this terrible disease. Daniel will be happy to give you my email and I will kindly share the different repurposed drugs cocktails that I used trying to help my mother. Johan has already commented on many relevant molecules, I really like sodium phenylbutyrate as johan has mentioned (his father-in-law had a remission with lomustine + tamoxifen + sodium phenylbutyrate + curcumin + melatonin)

Kind regards 


   
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