prostate cancer metastatic: husband has... - Advanced Prostate...

Advanced Prostate Cancer

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prostate cancer metastatic

Nely314 profile image
38 Replies

husband has been on Fenbendazole for 2 weeks with no adverse reaction, and has now come under an oncologist who has prescribed Biclutamide for 4 weeks and Zoladex injection 3 monthly. He has also been accepted into the trial of Xtandi. He was thinking about stopping the Fenbendazole as he was concerned that the different medications might counteract each other. Would like a bit of feedback please

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Nely314 profile image
Nely314
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38 Replies
6357axbz profile image
6357axbz

I don’t think Fenbendazole is even FDA approved. Did an MO prescribe that?

Nely314 profile image
Nely314 in reply to6357axbz

no

Magnus1964 profile image
Magnus1964

I would stop the fenbendazle during the trial, but discuss that with the doctor.

Nely314 profile image
Nely314 in reply toMagnus1964

thanks

Benkaymel profile image
Benkaymel

I'm surprised there even is a trial for Xtandi as its SOC to start it with ADT now.

Margoto profile image
Margoto in reply toBenkaymel

I was surprised also. My husband was on Xtandi for three years. Then it failed.

Nely314 profile image
Nely314 in reply toMargoto

what has he been doing since the Xtandi failed

Margoto profile image
Margoto in reply toNely314

He was then put on apalutamide but his PSA kept climbing more. Tripled in three months. Scans showed increased metastasis in ribs, upper spine and shoulder blade. Plus they were more aggressive. They became very painful. He is not able to tolerate chemo due to other health issues. Just tried radiation treatments to alleviate pain. Having side effects but hoping once that subsides pain will lessen. After seven years of misery he said he is through with treatment.

Nely314 profile image
Nely314 in reply toMargoto

know someone the same, that’s when he tried the Fenbendazole as he had nothing to lose, it seems to be helping

Rev214 profile image
Rev214

Fen doesn't seem to interfere with any of the standard of care(SOC). It helped to slow the spread down for my sister with very aggressive Stage 4 Renal Cancer(Clear Cell RCC with Rhabdoid features). Her Dr told her that most people with her diagnosis (Dx) do not survive long. About 8 months after her kidney was removed, he told her: "I don't know what you are doing, but keep it up because it is working. She had started Fenben right after her surgery. They had seen a, 2 mm spot in lung but observed it for a few months, until it slowly grew to just under a centimeter, making it likely a met. Then hhey removed it, and confirmed it was RCC met one of the staff told her after surgery, that the whole office though she was very special, as they never had anybody with her dx do as well as she, or survive as long.Taking fen could skew results of a study drug/placebo making progression slower, or make the study drug look more effective than it is. What do you have to loose? Quality of life, life itself. Fen has helped many, and seldom have I read of negative sideffects, except for those SOC may cause. My understanding it works best with standard of care drugs, synergizing with the more aggressive ones, like chemo's (usually drop to lower dose with less sideffects after initial full dose and nuclear meds, .

Few Fenben users discuss it with providers, understandably, because they could loose licence if they prescribed a non-approved med, Some providers are also heavy handed and tell them they won't treat them once they find out. That is a problem, as when they transfer records it can make it hard to find a dr that will provide SOC services like chemo, nuclear medicine, and scans for tracking success, or lack thereof.

My Sister opted to not share, no doubt from what oncologist said, he suspects she is doing something on the side. Even though, He is encouraging, respectful, and doing a superb job. She has had alot of residual nerve pain from the lung surgery...that never seems to go away. Fen doesn't help there, Dr has her on a host of meds for that, though they barely help.

Margoto profile image
Margoto in reply toRev214

I had a niece who survived two years with wide spread stage four renal cancer . It was a tough battle. Good luck to your niece.

j-o-h-n profile image
j-o-h-n in reply toRev214

Hello Rev214,

Greetings, I see that you joined us on May 25, 2021. There's nothing in your Bio so would you be kind enough to let us know what's been going on in your fight against Pca. Age? Location? Where treated? Doctor's name(s)? Treatments? and etc. All information is voluntary. Thank you. BTW you write highly for the use of Fenben, do you have any connection with the company and or its product? Thanks again and Regards...

(I'm a nosey sob).

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/11/2023 9:52 PM EST

Rev214 profile image
Rev214 in reply toj-o-h-n

Not nosey, just I am perhaps a little technology handicapped, I'll try to figure how to upgrade bio.

j-o-h-n profile image
j-o-h-n in reply toRev214

Thanks,

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 03/13/2023 11:08 AM DST

Nely314 profile image
Nely314 in reply toRev214

thank you for such a detailed email, he has only started on this journey, and he is waiting for some radiation therapy to hopefully make the pain subside in his shoulder and groin. As he has 35 - 40 spots/areas he is concerned that it is getting more aggressive by the day. It was only diagnosed about 3 weeks ago and his stronger pain meds aren’t helping at all, the only respite is when he is laying down. As he’s not sure just how quickly this insidious disease can spread as his PSA’s went from .05 to 66 in about 10 months, he wants to get his treatments sorted sooner rather than later

Tall_Allen profile image
Tall_Allen

There is no clinical data that fenbendazole does anything other than get rid of worms in men with PCa. Why worry about interactions, which are unknown?

Jeremiad53 profile image
Jeremiad53 in reply toTall_Allen

Some begin to see the end, and grab onto whatever can help. I will try Fenben at the end of this year if the SOC quits working. At some point why not? Eating different exercising, less fats, less carbs more color in the vegetables and fruit. Without something to pin hope on, even if small......... . . . . . . . it is a long slide then a very short slide to hopelessness, then Hospice.

Nely314 profile image
Nely314 in reply toJeremiad53

I wish you all good thoughts and results

Purple-Bike profile image
Purple-Bike

For me two prostate cancer markers reversed their upward trajectory after I started fenbendazole. Could well be a coincidence but who knows.

I would have an honest talk with your MO. I can tell you that mine in 2004 said absolutely no supplements unless he approved.

GD

Margoto profile image
Margoto in reply to

Sadly, some people will try anything when desperate.

in reply toMargoto

Gladly , I have ! ✌️

in reply to

Hey guy! My mo said the same thing . No high dose vitamins . But , I didn’t listen . I jumped fully into high dose vitamin c ivs and a lot of other nutrients to date . Each to their own .

dhccpa profile image
dhccpa

I don't think fenbendazole interacts negatively at all with hormonal medicine. I've been on it for 3+ years, Lupron for 4.5 years. No issues.

Nely314 profile image
Nely314 in reply todhccpa

how are your PSA levels going, have you been getting some positive results

dhccpa profile image
dhccpa in reply toNely314

My PSA dropped from 200 to below 1 on Lupron before I started fenben. 4 years later, my last reading in December was 0.67.

Difficult to tell what is doing what, but the first year was clearly Lupron. After that, I haven't drawn any conclusions.

Nely314 profile image
Nely314 in reply todhccpa

thanks for your email, it does give hope

Nely314 profile image
Nely314 in reply todhccpa

I’ve just read that Lupron has been discontinued as there are more effective hormone therapy available. Are you still on Lupron

chickgreen profile image
chickgreen in reply toNely314

Where did your read that?

dhccpa profile image
dhccpa in reply toNely314

Yes, still on Lupron. I haven't heard that it's been discontinued

Purple-Bike profile image
Purple-Bike

I was ambivalent and still am on posting about fenbendazole, because it may very well be a totally phony quack medicine no good for anything else than eliminating your worms; as TA indicated, there is no science behind it. I hope nobody uses it as a substitution for something else!

That said, I started fenben within a week or so of my ALP (alkaline phosphatase, marker for bone formation in turn marker for bone breakdown) and LDH (lactodehydrogenase, marker for tissue breakdown) numbers both having increased by 15-20 % to just at /very slightly above the edge of their respective maximum range. Next time I measured they were down to their old numbers, which they had hovered around in a narrow range ever since radiation to my met; they have continued in that narrow range since then.

The changes are small, well within what I suppose can be normal fluctuations and I don´t think the slightly higher numbers they arrived at were any cause for alarm per se at all. If it had been either ALP or LDH alone I wouldn´t have had a second thought about it. But since both simultaneously went first up and then down I can´t rule out that it just possibly might be the dog worm medicine that did it.

My third prostate cancer marker, PSA, has stayed undectable the whole time. But this may not say so much since I am low PSA, 1.7 at diagnosis.

TMcgee profile image
TMcgee in reply toPurple-Bike

I’m trying to understand ALP. How do know your ALP marker was related to bone and not liver? My AST and ALT have been elevated. I have assumed that the three markers were all connected to liver enzymes. Thanks

Purple-Bike profile image
Purple-Bike in reply toTMcgee

Thanks for pointing out this. I was incomplete. I use bone-alp as my marker, excluding liver and only measuring bone turnover. Once I used ALP and bone ALP at the same time, and they went in opposite directions. The changes were very small plus minus 3-4 %. This is within the normal range of variation só it almost certainly didn't mean anything, but I decided to go for bone ALP. I don't want to risk a normal-variation small decline in the liver number masking a significant increase in the bone number which is where prostate cancer mainly strikes.

Can add that my MO thought that simultanous 15-20 % increase in bone ALP and LDH was nothing to worry about. But I did and started fenben. No use in telling MO he would find it ridículous. The numbers went down. MO said that kind of limited variation is normal. Nothing worth notícing.

Cancer is serious so I should make a full disclosure! At the same time as I started fenben, I started taking a high dose of a combo glycine + NAC, Nacetylcysteine, for claimed anti-aging effects. Preventing cancer is among the many wonders claimed but this is not prevalent in the claims só if the lowered bone ALP and LDH numbers were not a coincidence I think fenben is the most likely reason. And AFAIK, when I Iooked at it, there are none of these amazing anecdotal stories of NAC or the combo having stopped cancer. And no case-control study either, which fenben has giving it the tiniest veneer of science albeit no proof.

(BTW I have stopped that combo after learning that NAC possibly could promote existing cancer. Lesson: be more diligent researching before starting a new substance!)

Sorry for the long digression!

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

My wife asked me what is Fenben?

I told her some men take it to help with their Pca,

and I said I wouldn't even give that to a dog....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/11/2033 9:40 PM EST

Nely314 profile image
Nely314 in reply toj-o-h-n

might be a different story if all else fails

j-o-h-n profile image
j-o-h-n in reply toNely314

You're correct..... I never say "cause you can never say never".

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/11/2023 10:45 PM EST

dhccpa profile image
dhccpa in reply toj-o-h-n

Glad you're getting more broad minded.

j-o-h-n profile image
j-o-h-n in reply todhccpa

Age + Wisdom.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/14/2023 11:02 AM DST

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