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Posted

I have metastatic NSCLC and have been through immunotherapy and presently on hold after being on tabrecta. So, I am searching for another line of therapy before doing chemo.

 

  • 1 month later...
Posted

The immunotherapy drug keytruda worked for almost two years. 

Then the Tabrecta was working for a couple of months and then it began causing lung problems. Bi-lateral pneumonitis and almost did me in.

So, now I am in chemotherapy and so far no real bad issues. Second round this week.

Posted

I want to try the Rick Simpson Oil regimen too. The oil counters the side effects of chemo too, as I understand it. Nausea and insomnia in particular.

Posted

Hi Jack,

My son wants me to try the Rick Simpson oil regimen. It sounds a little dangerous to make to me, plus you need a lot of marijuana. I would like to know how you make out if you do start it. Please keep us posted.

Pam

Posted
On 5/23/2022 at 10:11 PM, Pstar said:

Hi Jack,

My son wants me to try the Rick Simpson oil regimen. It sounds a little dangerous to make to me, plus you need a lot of marijuana. I would like to know how you make out if you do start it. Please keep us posted.

Pam

I should know soon. I’m going to try the trial sample next week.

Posted

Research is still out on RSO.  Yes, it's high in THC, but I look upon a "THC Based Solution" from a cannabis activist with a certain amount of skepticism.  I'd really like to see more evidence of efficacy, but if folks find it useful then more power to them.

Lou

  • 2 weeks later...
  • 1 month later...
Posted

And there’s the Joe Tippen Protocol (fenben). Well worth looking into IMO.

Posted

Hi Jack--

On occasion we've heard about people exploring the Joe Tippen protocol; but have yet to hear about anyone who actually went forward with it.  Let me know what you think about it.... I've always been curious.  

  • 1 month later...
Posted
On 8/14/2022 at 10:11 AM, Rower Michelle said:

Hi Jack--

On occasion we've heard about people exploring the Joe Tippen protocol; but have yet to hear about anyone who actually went forward with it.  Let me know what you think about it.... I've always been curious.  

Hi Michelle 

Sorry, I missed this until this evening when I decided to check in.

I am still skeptical, and hesitant to try it. But, if I run out of conventional options…..

  • 2 months later...
Posted

I just wanted to chime in on this since this was something I researched. There are actually many people on various other platforms who mentioned trying with different cancers NSCLC and SCLC included but no one here, perhaps because it's a bit less active. Fenbendazole supposedly works via the process of cancer cells having higher microtubule turnover compared to normal cells. With fenben the known risks seem to be liver enzyme raises in rare cases that reverse after stopping, it doesn't work, or possibly it makes hormonal cancer worse.

Fenbendazole

Unexpected Antitumorigenic Effect of Fenbendazole when Combined with Supplementary Vitamins

2008 so long before Tippens, they were aware

Fenbendazole acts as a moderate microtubule destabilizing agent and causes cancer cell death by modulating multiple cellular pathways

Mebendazole (same family but not available without a prescription, but supposedly crosses the blood brain barrier better)

https://pubmed.ncbi.nlm.nih.gov/33506200/

https://www.hopkinsmedicine.org/news/newsroom/news-releases/johns-hopkins-study-anti-parasitic-drug-slows-pancreatic-cancer-in-mice

There is also another school of thought that many people trying the Tippens protocol also seem to try. Basically it's based on the idea that cancer cells compared to normal cells have greater glucose needs, and by "starving" them, that's a method that can be used along with conventional treatment. Whether this is achieved through various pathway blocking or repurposed medications e.g. metformin ...There's also studies on fasting paired with treatments being more effective than treatments alone that show promise as well but that has to be weighed against the danger of not everyone being in a strong enough condition to fast.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7730661/ How Far Are We from Prescribing Fasting as Anticancer Medicine?

I have also looked over Jane McLelland's and COC material, but some of those supplements don't seem to be acceptably safe at this moment.

In 1962, the New York Department of Mental Hygiene published an article about 2 women whose metastatic cancers disappeared after a series of daily hypoglycemia-induced insulin comas (brief and reversible). These patients could not undergo conventional electric shock therapy, hence, the medically induced psychotherapy. Not only did their psychotic and depressive symptoms resolve, but their cancers (grossly visible cervical cancer and metastatic melanoma) became undetectable as early as 2 months into treatment.10 Zuccoli and colleagues reported on a glioblastoma that was effectively treated with temozolomide oral chemotherapy after the patient was weaned off steroids. The patient had a radiographic response and good tumor control for about a year, before discontinuing the diet. She transitioned to chemotherapy, which included bevacizumab (antivascular endothelial growth factor), but the disease progressed and she died.11 In addition, during 8 weeks of ketogenic dieting, 2 pediatric female astrocytoma patients experienced improved mood and showed decreased glucose uptake on PET-computed tomography (PET-CT) of their tumor sites. One of these patients continued the diet and remained disease-free another 12 months.12 These early case reports provide compelling evidence for further research into the role of glucose metabolism in cancer treatment.

From <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6375425/>

The glucose aspect is something they've been aware of for a a while.

Posted

I know that people do use FenBen but others are adamantly opposed.

Regarding keto diets, I was on one for most of 2019. Then I was diagnosed with Stage IIIB EGFR+ NSCLC in October of that year. That diet did nothing but mask the real cause of my weight loss. After undergoing radiation and chemo and now targeted therapy (for almost 3 years), I am NED and back to good health. The only supplements I take are what my primary doctor recommends for other conditions (like osteopenia). I'm skeptical of claims about both sugar and supplements, and in fact some supplements can interact with targeted therapy drugs. 

Posted
1 hour ago, Judy M2 said:

I know that people do use FenBen but others are adamantly opposed.

Regarding keto diets, I was on one for most of 2019. Then I was diagnosed with Stage IIIB EGFR+ NSCLC in October of that year. That diet did nothing but mask the real cause of my weight loss. After undergoing radiation and chemo and now targeted therapy (for almost 3 years), I am NED and back to good health. The only supplements I take are what my primary doctor recommends for other conditions (like osteopenia). I'm skeptical of claims about both sugar and supplements, and in fact some supplements can interact with targeted therapy drugs. 

Sorry to hear that. Congratulations on NED!

The science is definitely still out regarding keto. Don't mean to imply that I thought keto is good, just that they have been aware of the glucose mechanism since a long time ago. Personally, I think keto's claims are overrated.

There is a lot to be said about the role of glucose and pathways though whether it is through using caloric restriction, fasting, drugs, and to a lesser degree supplements. Yes, I've also researched the drug interactions, and I will be sure to check. Who knew taking antioxidant supplements during therapy was bad because it lowers the effectiveness of the drugs which work via oxidation?

I am sure some people do fine just with conventional treatment, but some people, especially those in Stage IV, want to improve their odds. I've already gotten turkey tail and reishi for my dad and studies out say taking is better than the non-taking control. They're standard adjuvants in the Old Country for anyone who can afford them. Sadly, some rare stuff is out of my $$$ reach.

 

Posted

I do know of people who take turkey tail supplements and haven't heard anything negative. Not sure about reishi. As an EGFR patient, I know to avoid antioxidants. They can also encourage cancer cell growth. 

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