04/26/19 PSA 2.07
05/14/19. STARTED FENBEN/HOOKWORM MED/FENBENDAZOLE
05/24/19 PSA 2.39
06/05/19. PSA 2.5
06/21/19 PSA 2.69
07/19/19. PSA 3.00
I'M ALSO ON LURPON, XTANDI, XGEVA...AND HAVE DONE PROVENGE, CHEMO(TAXOTERE), RADIATION, & H.I.F.U.
MY PSA REMINDS ME OF AN OLD SONG..."UP UP AND AWAY...IN MY BEAUTIFUL BALLOON"..........LOL
STILL FEELING GREAT AND WITH BETTER ENERGY AND ONLY PAIN IS NEUROPATHY TYPE PAIN (ESPECIALLY AT NIGHT) IN MY LEGS.
THIS IS THE UPDATE.
gJohn
Hang in there, John! I’m not familiar with this treatment but wanted you to know that we are all here pulling for you to have a very positive response - perhaps it’s just a little slower than we all hope.
Glad you are feeling well!
James
did you measure prolactin? Look at this story: ncbi.nlm.nih.gov/pmc/articl...
Very interesting. Going to re read later in the morning when my brain is fresher😊😊😊😊
gJohn
Interesting article - thanks for posting. Dr. Ben Pfeifer - my husband's first onco - used to measure his prolactin regularly and had him on something to bring it down. Can't recall right now but don't think it was cabergoline as mentioned in the study. Maybe time to revisit that.
Did you go to Switzerland to see Dr. Pfeifer? What was his protocol? Was he on Prostasol (which year, because it contained estrogen for some time)? Would be interested in what he gave to keep prolactin down (maybe vitex, ashwaghanda?)
We met with Ben in London several times at conferences where he was speaking and also had SKYPE app'ts. His protocol is slightly different for everyone - (google "Pfeifer Protocol) but yes he was on Prostasol as part of the protocol. My husband was on it for about 5 years. It brought his PSA down from about 60 to 1.22 in 2 months. We still consult with him occasionally. I highly recommend him.
I don't know if you know, but Prostasol had for some years estrogen inside (not mentioned). After they took it off patients have switched to take in addition estrogen or DES. Why did you drop the protocol, wasn't it working anymore?
what kind of results with DES...I started taking it to
He stopped the protocol after about 4 years when radiation then chemo became necessary.
I see. Did the PSA rise or he had symptoms or scans showed it?
Here's a talk he gave in London which we attended.
How is he doing now?
Looking through old (very old!) notes, he was prescribed bromocriptine to lower prolactin. As I recall he didn't stay on it long due to the side effects. My husband is very sensitive to any medication - as he was probably well into his 40s before he even had an aspirin . . .
Hang in there John. Hopefully, your PSA will go back down and your neuropathy pain will subside for you soon.
I started doing the fenbendazole thing near the end of May, shortly after you did. My last Mayo M.O. visit was prior to that (5/7), and my PSA had gone up to 0.22. My M.O. had me stop bicalutamide. He said that sometimes the PSA paradoxically drops after long term bicalutamide is discontinued. We’ll see when I have my next visit on 8/9.
I’ve been doing the fenben 3 days on, 4 days off. Not sure it’s doing anything. If my PSA is still going up I’ll stop it. If it goes down, I’ll probably continue it.
Best wishes to you!
I was thinking: your trials in natural supplements or off-label drugs, birm, febendazole, were they always consecutive? because from a holistic point of view you never focus on just one thing.
I doubt, specially with natural supplements, that one thing can give you fast results. Off-label drugs, maybe, but also there, from a metabolic point of view, many pathways should be blocked, so more than one off-label drug at a time.
It is just a question, since I did follow your story, but don't know your details on trials with off-label or supplements.
I overlapped fenben and BIRM for over a month. And I'm doing Indomethacin...but I might throw in the whole lot...plus the kitchen sink and a few dead chickens (santeria) and fairy dust for good measure soon 🥰🥰🥰
Have a great weekend!
J
Perhaps you should consider Lu 177 PSMA therapy if PSA is going up ehrn in ADT and Xtandi after having chemo in the past. There are several clinical trials:
clinicaltrials.gov/ct2/resu...
Since you are using anti-helmintic drugs, you could see if you qualify for the trials with the special niclosamide (the one that gets absorbed in the gut) which could re-sensitize the cancer to enza or abi.
clinicaltrials.gov/ct2/resu...
If there are bone metastases, Xofigo could be other possible treatment.
It's seems like it's gotten much worse with Xtandi.
Sorry to hear - but yes - hang in there!
We live and die by the PSA every month so my husband has elected to skip this month testing as he had 2 UTIs which would likely raise it. He just finished 10 weeks on FENBEN and on Thursday started the COC protocol.
From the Facebook group it looks like 12, 16, 20 weeks are the general benchmarks when people start noticing a difference. That's what we're hoping for.
Sending good vibes your way!
Thanks Emily! (for everything)
👍
❤️🙏. Always one of my heros
Hang on in there and best of luck - it’s only been a short while, and it does seem that it takes a couple of months at least to have a visible effect.
Hello John
As mentioned previously, CareOncology use mebendazole rather than the canine version, and it's 2 x 100mg daily (twice the normal one-off human dose) for a month, then a break for a month (during which 100mg doxycycline).
They say they typically see a PSA reduction after three to four months of this approach - so a couple of the mebendazole cycles. The PSA dip I saw before starting SRT/ADT came four months into their protocol (so two cycles of mebendazole) but the first cycle was only at 1 x 100mg/day - they start at that level to make sure it is tolerated.
I don't know how much faith you want to put in "instantaneous" PSADT estimates, but PSA readings should be pretty accurate at the levels you're at. The overall PSADT between your first and last reading is 5.2 months, but calculating a new estimate for each reading gives: 4.5, 6.2, 5.0 and 5.9 months - maybe there's a slight improvement there, or it could just be noise. Admittedly, the Ln PSA vs T graph looks quite straight - still, maybe give it another month or two to see if PSADT slows. If not, then I guess it's not working.
Stuart
How much did your PSA decline on COC before SRT/ADT?
Hi
I never really gave CO much of a shot (although I have stuck with it post SRT even though the ADT has killed the PSA - I figure now is a good time to kick the stuffing out of anything left) - my PSADT slowed, from around 3.6 months to the last couple of readings being 15 months and then negative when PSA fell about 10% in the last couple of weeks before I started the ADT (and the radiation two weeks later).
I kind of wish I had stayed off the ADT for a little longer just to see if that final PSA measurement (the only one of the ten post-RRP to show a decline) was just noise - but the SRT was scheduled in, and there was lots of emotions swirling anyway.
The short PSADT and a very high Decipher (0.92) really have me spooked, so I didn't want to hang around. Much as I hate this ADT stuff, I don't miss monthly stress of waiting for the PSA result - I guess that will start up again soon, once I back the ADT off and T starts to return... that's where I'm hoping that CO will prove its worth.
Stuart
You probably did it right, since ADT has a sinergy with radiotherapy and gives better outcome. Anyway very good results with CO, did you just take the 4 meds (metformin, statin, mebendazole and doxycycline or more (Mc Lelland)?
Just the four - still take them every day... can't say I enjoy the mebendazole taste, but I'm hoping some other little @#$%$ down there like it even less. Who knows, but I don't think it's doing me any harm.
maybe add some probiotics because of doxy.
Dear greatjohn (and others interested in this topic),
keep your fingers off from Fenbendazole! Given in one single dose, it is usually well tolerated by many species including humans and kills worms. But repeated intake may block cell division in tissues which proliferate rapidly (probably the idea behind using Fenbendazole). The drawback is that repeated application can potentially interfere with cell division in the cells producing the lining of the small intestines (which have a turnover rate of 5-6 days) and thus entail diarrhea. Yet worse, it may affect cell division in bone marrow leading to reduced immunocompetent cells - certainly a risk for most cancer patients. I bumped into this issue because, very recently, a cure against a specific kind of worms in my pigeon colony required a five day treatment. Half of the pigeons died, not from Fenbendazole, but succumbing to infections with otherwise harmless bacteria or parasites. In other words, repeated Fenbendazole application may entail, certainly in pigeons and parrots, immunodeficiency. There have been occasional reports about similar effects in other species including mammals for drugs acting similar as Fenbendazole such as Albendazole (Plumb’s Veterinary Drug Handbook, 7th edition. St. Paul, Minnesota: PharmaVet Inc., Stockholm, Wisconsin, page 39). I hope your PSA values will stabilize after you discard Fenbendazole. Whatever reason for the rise in your PSA levels, treating pCA with a drug that is known to harm other species severely is certainly not commendable. I wish you all the best!
Thank you for a serious piece of information. Aside from the reference to Plumb's (could you quote the text so we do not have to buy the book?), could you point to references for the impact on cell division? I have read the blog and Facebook entries from Joe Tippen and his folllowers and not encountered this issue.
Please note that I am transferring my experience as a pigeon breeder and my research has focused on this topic. I have used Fenbendazol (Panacur) in kittens, marmosets and snakes without observing negative side effects, but the surprising death of so many pigeons has prompted me to do some research, with rather disturbing results.
The systemic effects of Fenbendazole on rapidly dividing cells in birds are clearly evident for any observer during the moult, as it blocks growing of feathers (mostly mentioned under contra-indications for Fenbendazole). The effects on rapidly dividing cells have been discussed in several papers listed below.
I suspect that the manufacturers of Fenbendanzole are reluctant to list side-effects that might not occur during short application periods in pets. The manufacturer certainly knows about some dangerous aspects of Fenbendazole. For example, the German packaging prospect for Panacur suspension 10% explicitly warns people handling the drug that it may be toxic for humans, that embryo toxic effects cannot be excluded and warns pregnant women to get in contact with the stuff - not what you expect from a harmless drug. As many other drugs may be both helpful yet having severe side-effects for cancer patients, I do not oppose its use for humans completely. But I would never take it myself.
Since I believe that the topic is a bit esoteric for most of us, I suggest that those interested can ask me for a link to my dropbox with the full-texts. I am receiving the papers through a University library library and should not provide public access, but private requests are permitted. I have tried to copy-paste the page 39 in Plumb's book and failed thus far, sorry for that.
Gozalo, A.S., Schwiebert, R.S., and Lawson, G.W. (2006). Mortality associated with fenbendazole administration in pigeons (Columba livia). J. Amer. Assoc. Lab. Anim. Sci. 45, 63-66.
3)
Howard, L.L., Papendick, R., Stalis, I.H., Allen, J.L., Sutherland-Smith, M., Zuba, J.R., Ward, D.L., and Rideout, B.A. (2002). Fenbendazole and albendazole toxicity in pigeons and doves. Journal of Avian Medicine and Surgery 16, 203-210
4)
Rivera, S., and Reavill, D.R. (2000). "Suspected fenbendazole toxicity in pigeons (Columba livia)", in: Association of Avian Veterinarians: Association of Avian Veterinarians).
5)
Plumb, D.C. (2011). Plumb’s Veterinary Drug Handbook, 7th edition. St. Paul, Minnesota: PharmaVet Inc., Stockholm, Wisconsin, page 39.
I appreciate your insights, will do the private message as suggested.
Well Callithrix.. you finally sent us a post by carrier pigeon. I will be sending a message to you via the same bird. Here it is: Thank you for your astute and informative post. I and I guess most of us really appreciate your participation in a very important and somewhat controversial topic. Now here goes my worn out questions for you: Your age? Your location? Your Pca scores psa/gleason? Your treatments? Your treatment center(s)? Doctor's name(s). All the information is voluntary but it helps us help you and helps us too. If you wish to respond, please do so in a future post and not directed to me. Thank you....
Here's one for you " I love online auction sites. I sold my homing pigeon six times last month".
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 07/21/2018 4:20 PM DST
Thank you for bringing the laughs!
Thank you for thanking me..
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 07/21/2018 10:06 PM DST
Of the references in the drop box, other than Plumbs the studies are limited to pigeons. In Plumbs, the only caution for human use that I see on page 39 (I did not read the 1200 pages)(and it is not clear to me if this reference is only to albendazole or is also to fenbendazole):
“In humans, caution is recommended for use in patients with liver or hematologic diseases.”
This is shortly after stating that “Pigeons and doves may be susceptible to albendazole and fenbendazole toxicity . . . .”
My recollection is that, long ago, fenbendazole was found safe for human consumption by the US (FDA?). Thus, if one does not have liver or hematologic disease, IMO these references do not suggest humans need to avoid fenbendazole.
I am in no way, shape, or form a scientist or doctor.
I'm plan to continue, guardedly & optimistically, until summer's end...
I have liver and everything checked very often. All's been great in that department.
Everything really has been great...except my PSA's tendency upward. My frequent scans are great...but I want miraculous!
Thanks,
gJohn
Life is Beautiful.
Contrary to my opinion expressed above, a retired prof of behavioral neuroscience (who makes no claim to cancer expertise) has commented as follows. It is way beyond my ability to evaluate, but I think it best to show a differing opinion. Also see the comment in another post that Merck in Switzerland cautions against human consumption.
"Since Fenbendazole is a drug interfering with cell replication (presumably by impairing the alignment of chromosomes or other cell organelles) it does appear to me like another chemotherapy, some of which are also occasionally reported to eradicate even aggressive cancers. In fact, I would expect that it might be beneficial for cancers of the digestive tract as long as the rapidly dividing stem cell population in the epithelial crypts is at least partially conserved and most of the Fenbendazole is flushed through the guts. Its effects on other rapidly dividing cells in the body (chiefly bone marrow for erythrocytes and immunocompetent cells) appears less predictably, however. It is likely that there must be some uptake into the body to achieve any cancer-killing effects as claimed by people having used it, but there may be an oscillating status of the immune system during which chemotherapies targeting rapidly dividing cells (both cancer and immune system) may entail positive or negative effects for the patient, depending on the proliferative status of the immune system and that of the cancer.
"
Had hoped you would be telling us better news but might be to early to say. Fight that monster 🙏🙏🙏🙏
I'm trying not to judge too soon....just reporting the results as they come in. Ever hopeful. 😊
II used to have leg pains / cramps at night and found a solution that worked for me.
I take magnesium at night (up to 250 mg - with some melatonin mixed in). That works every time for me.
Hope it helps calm things down 4 U ....
My husband uses magnesium oil (topically) which helps - but it helps muscle pain and not neuropathic pain (this is our anecdotal experience). I use it as well for post-workout soreness and it works like a charm.
There is a chronic pain management drug that I found quite accidentally as an off label medication. It took some convincing on my part, in terms of my GP buying into the OK to do so.
Today my GP has prescribed this drug to select patients who don't have a history of drug abuse.
I refer to low dose naltrexone. I take 3 @ 1.5 mg (tot 4.5 mg) daily. I take it anytime because there aren't any known side effects. There is enough significant research on it to justify the growing use of it.
You will need a compounding pharmacist to mix it up for you, but the cost so far is about $0.50 each. I get 200 at a time. This has worked consistently for months - is non addictive and has changed my life - I have a significant arthritic problem with a bad case of insomnia.
The combo of cannabis tincture (CBD during the day - THC at night) and 'low dose' leaves me pain free. Maybe, it might help you .....
I'm starting on my new Panacur regimen this morning, so I'm sorry to see this result, but if I may...glass half full?
We've all been taking supplements of all kinds for years, decades even, not knowing if they work or not, kind of hoping they do at least some of what we're told they do, giving up on some, starting on new ones. I've developed this rationale (or irrationale) that things might have been worse had I NOT been taking them, and I'm probably not alone in thinking this way. It's probably more hope than it is reason.
So, was your PSA rising before you started on fenbendazole? If so, do you have a sense that maybe it rose less in the last 3 months than it would have without it? By my math (disclosure: may have nothing at all to do with actual math), it rose 25% in about 3 months. Is that kind of rise in the context of the other meds you're on cause for the same concern that doubling in that timespan would be if you weren't on those meds? I mean, when a guy is taking those meds, the concern is not so much doubling time but any increase at all?
We all continue to hope - sometimes I think that's the most remarkable human trait, persisting in the face of all evidence, simply to make us feel better, give us reason and courage to get out of bed each morning. Keep on keeping on.
Bless you.
Hope springs eternal 🥰
Indeed! (One of my favorite quotes by one of my favorite poets).
My husband proposed on this bridge in Bath that Alexander Pope designed:
en.wikipedia.org/wiki/Prior...
Wow. Beautiful!
Coincidence, I'm trying to throw my ex-wife off of that bridge....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 07/21/2018 4:24 PM DST
🤣
youtube.com/watch?v=dxGzPaM...
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 07/21/2019 4:27 PM DST
To greatjohn from g-r-e-a-t-j-o-h-n
Okay all kidding aside: For your neuropathy and leg pain try these two prescription meds...
Neurontin/Gabapentin 600mg twice a day.
Duloxetine (Cymbalta) 30mg once a day.
NOTE: the Cymbalta is actually used to treat depression and anxiety. In addition, duloxetine is used to help relieve nerve pain (peripheral neuropathy).
BTW those flowers you cooked look delicious...
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 07/21/2019 4:59 PM DST
I'm on Gabapentin...I'll check out the other. THANKS. & yes, the flowers were delicious.
J.
Have you tried topical gabapentin? My husband's functional medical doc orders it from a compounding pharmacy. Gordon doesn't have side effects from it the way he does from the oral.
I've been okay with oral (low dosage)...but I might ask about topical to supplement my oral. I've had no problems (that I know of)
Woof woof grrrrrrr woof .... which means dog gone it gj , hang in there buddy. We’re all out here with you.
So do u think Fen Ben has helped?
I did it for about 3 months. Taking a holiday from all extra stuff while on a 5 week vacation. Not sure how it helped...nothing got too much worse while on, but no miracles to report....yet 😊
Is fenbendazole the same as niclosamine?
I just researched them...and it sounds like Fenben is more of a "broad spectrum" parasite killer. They are NOT the same. (from what I read)
Does the effect of Docetexal goes away after 2 years in this case? 
Bummed 3 years post RP 
