Fenbendazole probably not working for me - Advanced Prostate...

Advanced Prostate Cancer

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Fenbendazole probably not working for me

cigafred profile image
19 Replies

In my case I think it is pretty clear that Fenbendazole has not been effective.

Old History

PSA 5.3, RP March 2009, Gleason 3+4, focal PNI

PSA undetectable until Oct. 2011

PSA 0.658, Salvage Radiation Sept/Oct 2012

No impact on PSA, RO clueless

July 2014, Nano-MRI at Radboud, Netherlands,

8 infected lymph nodes, 4-9 mm, para-aortic left and common iliac right

Feb/Mar 2015, IMRT to those areas, plus 4 months of degarelix, PSA went to undetectable.

PSA returned, 3.65, with cessation of ADT, so recommenced degarelix Dec 2015 (I had waited a couple of months while expecting to start Dr. Amato’s trial of apalutamide, which never did start due to his health and eventual death.)

I take other supplements including nattokinase, beta-glucan, cantabiline, and berberine.

PSA was exactly 0.02 (the lowest detectable by the lab used) June 2017 to June 2019. Part way through switched to Lupron due to side effects.

Past Eight Months

Began Fenbendazole June 4, 2019. Usual dosage (222 mg, 3 days on, 4 off, after an initial week continuous). Plus the recommended E, milk thistle, and curcumin, not the cannibus.

PSA <0.02 in Aug, about when the Fenbendazole would be expected to take effect.

Last Lupron 3-mth shot Aug. 2019. Added dutasteride in November.

Subsequent PSAs: <0.02 Sept &Nov, 0.02 in Dec & Jan, 0.10 in Feb 2020, 0.26 in March.

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cigafred profile image
cigafred
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19 Replies
George71 profile image
George71

I would talk to Dr. Bob Leibowitz -- see about continuous super physiological high dose testosterone (SPT). He has had patients on it for many years. it causes PC cells to not be able to divide as fast or at all -- and double strand breaks.... likely better than BAT -- that way you don't become CRPC -- if you can slow the progression down to a crawl -- it doesn't matter.... you outlive it -- like a chronic disease.

compassionateoncology.org/v...

compassionateoncology.org/v...

PhilipSZacarias profile image
PhilipSZacarias

Hello Cigafred, I have been on fenbendazole since last December and there has not been a change in the trajectory of the PSA trend. There have been anecdotal reports of it working (and an analogue, mebendazole is undergoing clinical truals in the UK) but response may depend on prior treatment (like docetaxel) and the aggressiveness of the cancer. Even SOC therapies don't work sometimes. Cheers, Phil

abmicro profile image
abmicro

My oncologist said he has not seen any good response on prostate cancer from his experience with patients. I tried it for a month before starting chemo but dont know if it helped. Did certainly did not hurt me to try it. Solved my constipation problem.

Millbrook profile image
Millbrook

Other people have taken a higher dose than what you are taking. For more advanced cases people are taking 2 doses a day everyday. The thing is you have to adjust the dose yourself . Best thing is to check with those people who have similar type of cancer and what their dose was to yield positive progress . All the best

cigafred profile image
cigafred in reply toMillbrook

Thank you, but I do not think it wise to up the dose since we have little idea whether that would be beneficial or harmful and since Joe Tippens himself had cancer throughout his body versus my 0.02 PSA and he has a durable remission with this dosage.

dhccpa profile image
dhccpa in reply tocigafred

Joe also did Keytruda at same time.

cigafred profile image
cigafred in reply todhccpa

My understanding is that the Keytruda ended long ago for Joe, the fenbendazole continues to keep him well, and that others in his position succumbed despite the Keytruda.

dhccpa profile image
dhccpa in reply tocigafred

True but he started fenben at same time he started Keytruda and that's when his cancer disappeared. So there may have been a synergistic effect with Keytruda and fenben.

Rhonnyg profile image
Rhonnyg in reply todhccpa

No that is incorrect

dhccpa profile image
dhccpa in reply toRhonnyg

No it is correct. Read his web site.

mycancerstory.rocks/

john205 profile image
john205

Everyone's experience is different so mine will not necessarily be informative for yours. Also, our history is very different and I have had treatment with docetaxel concurrent with Lupron. At the time of my diagnosis in July 2018, I had high burden metastatic disease with Gleason 8. I began Lupron in July 2018 and then docetaxel in September. My PSA hit it's lowest point, 0.16 in May 2019 and has now been slowly rising since then, to 0.39 in February 2020. So, up to now, I have had about 20 months of response with some signs that it will be resistant within the next 6-12 months when I anticipate adding one of abiraterone, enzalutamide or apalutamide. That may also be with more chemotherapy, although I may delay that if I can do so safely, to avoid immunosuppression during the coronavirus pandemic.

As far as my experience with Lupron, I have had some changes in fat distribution, loss of libido, and my hair has not been the same since chemo ended a year ago. I have been rigorous with avoiding weight gain with diet, and avoiding fatigue with regular vigorous exercise. I have been fortunate not to have hot-flashes or other notable adverse effects from Lupron. It's been a standard of care for decades, and it works well, but its effect does not last forever for everyone.

Also, understand that I am believer in standard of care and guidance from controlled medical trials. I am not inclined to chase alternative care methods that have not been proven by trials, even if there are anecdotes that people tell of their individual experience. My belief is that if you are doing standard of care, alternative care is OK if it is safe and does not interfere with the standard care. I believe that using alternative care instead of standard care is a mistake and can be dangerous.

cigafred profile image
cigafred

I should have been more clear that my purpose in posting was to provide one more anecdotal instance to assist others in evaluating this treatment. Thank you everyone for your input.

j-o-h-n profile image
j-o-h-n

"my purpose in posting was to provide one more anecdotal instance to assist others in evaluating this treatment. "

Thank you.... we need more members like you........✔✔✔

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/13/2020 3:42 PM DST

MateoBeach profile image
MateoBeach

Thank you for your frank and open-eyed report.

I am preparing for Lu-PSMA Tx in Australia and my recent labs put that into question in that I had anemia, thrombocytopenia, lymphopenia with eosinophilia. Strange blood count changes for me. But I had been in Cabo, Mexico for 3 months of the last 6 and eat lots of pork and raw fish while there. So good chance I have a parasitic infection.

Went to my pharmacy with an Rx for mebendazole, 6 tablets of 100 mg and was told the cost, even with Medicare Part D coverage, was over $2,300 USD!! In Mexico over-the-counter it would have been less than $10. Inquired about the alternative Albendazole 2 X 200mg tablets were over $350 US. Outrageous!

So I'm taking Febendazole (PanaCur-C) bought from Amazon.com without prescription very inexpensively to self-treat for any likely intestinal parasites.

I used to go to the Peruvian Andes as a medical volunteer. We would bring jars of 1,000 tablets of 100 mg albendazole to give to every school child in each community we visited.

From MAP International 1,000 tablets cost about $12.

Cannot figure that one.

lewicki profile image
lewicki in reply toMateoBeach

Hello, just read your post. I am going to start Fenbendazole . I have been unable to understand a few things. The Panacur-C is 222 mgs. It seems the package is one gram. Does this mean the rest is filler? When you take it three times then off four days does this kill all Parasites. How many times do you need to accomplish this. Then I understand one would continue the medicine for the purpose of helping our prostate cancer.

Thanks Ted

cigafred profile image
cigafred in reply tolewicki

Yes, the rest is filler. You are not trying to kill parasites, the hope is it attacks what, as I recall, are microtubules inside cells which are part of making it possible for cells to grow by dividing. Recently, on Joe's blogg, someone reported that the OMRF is no longer auditing data for Fenben, don't know if this is true.

cigafred profile image
cigafred

Hence my posting

dhccpa profile image
dhccpa

What do your scans show? I don't trust PSA alone? What's happening/has happened with your mets and the tumor material inside the prostate?

cigafred profile image
cigafred

At 0.02 PSA there is no point in scans. I had RP, SRT, and IMRT to the common Iliac and para-aorta mets well before all of this.

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