Xtandi + Niacinamide: Hey guys, I have... - Advanced Prostate...

Advanced Prostate Cancer

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Xtandi + Niacinamide

Magnus1964 profile image
73 Replies

Hey guys, I have been on xtandi for 4 1/2 years. Started in a clinical trial. After 4 years my PSA started to rise. the trial ended but my Research Doctor told me to stay on Xtandi. My PSA continued to rise to 78..86. No new trials or treatment were available so once again I had to do my own research. I found some studies on adding Niacinamide with xtandi to improve the efficacy of the xtandi. Since adding Niacinamide to xtandi my PSA dropped from 78.86 to 71.90 then down again to 63.94.

This was the only change I made in my supplements. So if you're failing Xtandi, try Niacinamide. I take 500mg in the morning and another 500mg in the evening with my full dose of xtandi.

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Magnus1964 profile image
Magnus1964
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73 Replies
Tall_Allen profile image
Tall_Allen

Time to try something else.

2dee profile image
2dee

Not a major drop but in a better direction.

Let us know how this treatment evolves.

Are you also on Lupron/Erlandia plus the Xtandi?

2Dee

Magnus1964 profile image
Magnus1964 in reply to2dee

I'm only on xtandi and niacinamide.

podsart profile image
podsart in reply toMagnus1964

What has been your T levels over these years?

Magnus1964 profile image
Magnus1964 in reply topodsart

T-level have been low for years. It has been under 20.

podsart profile image
podsart in reply toMagnus1964

Ok, thanks, good luck

GeorgeGlass profile image
GeorgeGlass in reply toMagnus1964

what is causing your T to be so low? What is suppressing it?

Survivor1965 profile image
Survivor1965 in reply toMagnus1964

Hello Mag,

Wondering why you are not on Lupron as well as the Xtandi? I always thought that was standard issue, not that I know much :-)

Magnus1964 profile image
Magnus1964 in reply toSurvivor1965

I had an orcheictomy so Lupon is not needed.

londoncyclist48 profile image
londoncyclist48 in reply toMagnus1964

Interesting. Do you know how much testosterone is produced by your adrenal glands or is it negligible?

Magnus1964 profile image
Magnus1964 in reply tolondoncyclist48

Last testosterone test was 7.0. My PSA started going up after two big drops.

londoncyclist48 profile image
londoncyclist48 in reply toMagnus1964

Thanks. I just wondered. I have considered the orchiectomy because I don't like the zoladex injections but will keep it under constant review. Very interesting to speak with somebody who's had it done. All the best, Tom

londoncyclist48 profile image
londoncyclist48 in reply toMagnus1964

Did you request the orchiectomy or was it recommended by your doctor?

Magnus1964 profile image
Magnus1964 in reply tolondoncyclist48

It was the only option available at that time. It was a recommendation by the doctor.

GeorgeGlass profile image
GeorgeGlass in reply toMagnus1964

do you get hot flashes and other side effects like people on lupron?

Magnus1964 profile image
Magnus1964 in reply toGeorgeGlass

After the orchiectomy, big time sweats.

GeorgeGlass profile image
GeorgeGlass in reply toMagnus1964

You still have the heavy sweats or did it dissipate?

Magnus1964 profile image
Magnus1964 in reply toGeorgeGlass

The sweats are gone but it took a long time.

GeorgeGlass profile image
GeorgeGlass in reply toMagnus1964

ok, now I understand.

Shanti1 profile image
Shanti1

wow, that is great Magnus, hope it keeps going down. Thanks for sharing your findings. You are an inspiration to us all to keep going!

Magnus1964 profile image
Magnus1964 in reply toShanti1

I will keep everyone informed.

LearnAll profile image
LearnAll

Magnus1964,

There is lot of buzz among researchers lately about adding NICLOSAMIDE to Enzalutamide or Bicalutamide. Niclosamide has potential to reverse resistance acquired by anti androgens mentioned above and keep them effective for a long time.

In USA it is hard to get NIclosamide...If my bicalutamide starts failing, I plan to bring Niclosamide from overseas. Its not expensive at all...its tapeworm medicine and is generic in most developing countries.

Magnus1964 profile image
Magnus1964 in reply toLearnAll

Great to know. I will have to do some research. It could be a back up if niacinamide fails.

dustydog profile image
dustydog in reply toLearnAll

According to this on PubMed, it has not shown to be effective - pubmed.ncbi.nlm.nih.gov/298...

LearnAll profile image
LearnAll in reply todustydog

There is always a study to contradict other dozen studies. Just read the other ones below this current one.

Magnus1964 profile image
Magnus1964 in reply toLearnAll

Hey I did some research, Niclosamide is a dewormer as is Fenbendazole. Have you taken niclosamide and what was your experience?

LearnAll profile image
LearnAll in reply toMagnus1964

Magnus...I have not needed it yet. My PSA is 0.3 with Casodex and Finasteride. Niclosamide is on my radar if and when Casodex loses effect. I hope it does not lose effect for next 5 years like in your case.

(Note: Casodex monotherapy gave Magnus 5 1/2 years without progression)

Magnus1964 profile image
Magnus1964 in reply toLearnAll

Great news, keep up the good fight. Niclosamide is now on my radar.

GeorgeGlass profile image
GeorgeGlass in reply toLearnAll

but wasn't that immediately after the archeicomy?

Magnus1964 profile image
Magnus1964 in reply toGeorgeGlass

In my case, I was on casodex after an orchiectomy and radiation.

LearnAll profile image
LearnAll

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Niclosamide Reverses Resistance to Bicalutamide /Enzalutamide

Even a simple pain medicine, INDOMETHACIN can reverse Bicalutamide resistance.

Escudilla profile image
Escudilla in reply toLearnAll

No contradiction here. The human dose-escalation study showed that you couldn't expect to get niclosamide to an effective level. There is an observed in-vitro effect that is apparently unobtainable in humans.

LearnAll profile image
LearnAll in reply toEscudilla

Similar argument was made in past about Curcumin's bioavailability. They forgot to tell that just adding some black pepper to turmeric powder can increase bioavailability by 100 times.

Grumpyswife profile image
Grumpyswife

I know you are referring to Xtandi which my husband has been off for more then a year.

Xtandi quit working for him and he changed to Abiraterone, first with prednisone, now with dexamethasone which appears to no longer be working to lower PSA.

Any suggestions on something else to try with Abiraterone? When he was using Xtandi he was never able to tolerate the full dose but it somewhat worked for about 18 months.

Thanks.

Magnus1964 profile image
Magnus1964 in reply toGrumpyswife

I don't know of anything else. As far as other suggestions in general I would say keep up his vitamin D3 level, Ip6 inositol and zinc.

Olivia007 profile image
Olivia007

That’s great news

Haniff profile image
Haniff

Hi Magnus

Thanks for sharing :)

May I check with you, are the side effects of Xtandi as bad as many here make it out to be as compared to Zytiga? Let me be clearer with my query: I have heard horror stories of severe fatigue, loss of balance or equilibrium, pain in the hips and difficulty walking and so on.

The reason I am asking is I am presently on Zytiga for the last 5 months but my PSA is hardly declining and my good oncologist is thinking of putting me on my second chemo i.e. Cabazitaxel

I am quite disappointed with Zytiga, had high hopes and I am taking it with prednisolene. I have asked my good oncologist to perhaps change to dexamethasone but he said it won't help.

Any good brothers please jump in to share and give any inputs too. Thanks :)

My very best to you Magnus ❤

Haniff

Magnus1964 profile image
Magnus1964 in reply toHaniff

I have not experienced any side effects with xtandi except a a I can't answer those Jeopardy questions like I used to. I know the answers but just can't get them out before the contestants.

j-o-h-n profile image
j-o-h-n in reply toMagnus1964

I know all the answers as soon as I hear the contestant's correct answers....It's a breeze...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/12/2020 6:09 PM EST

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

What comes in one ear and out the other?

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

A breeze...........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/12/2020 6:34 PM EST

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

True but definitely not a stiff one

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

Caramba, No typhoon? Like the Philippines.......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/12/2020 6:55 PM EST

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

That would be a BATastrophe!!!

Magnus1964 profile image
Magnus1964 in reply toSPEEDYX

Good one.

Magnus1964 profile image
Magnus1964 in reply toj-o-h-n

You got it. I can't bring those answers up as fast as I used to.

j-o-h-n profile image
j-o-h-n in reply toMagnus1964

Best by watching the original shows.... and answering the questions in the re-runs....

(make sure to keep shows in sequence)....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/13/2020 1:44 PM EST

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

Iam ready I watched Art Fleming waiting for reruns!!!

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

LOL On b/w kinescope.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/13/2020 2:19 PM EST

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

The 4k of its time

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

brb......... don't run away.......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/13/2020 2:26 PM EST

monte1111 profile image
monte1111 in reply toHaniff

3 years xtandi for me. Will make you sleepy in about an hour or so, so I take at night. I have fatigue. Memory issues that could be from xtandi or lupron. Minor issues if it works. I guess it's a try it before you buy it thing. If someone is looking for monsters, I guess they will find them.

snoraste profile image
snoraste

That's good news Magnus. Since one mechanism of action of Nico is to reduce cholestrol (from what I read), I wonder if you would benefit from adding a high dose statin to your list.

Magnus1964 profile image
Magnus1964 in reply tosnoraste

Interesting!!!!

MateoBeach profile image
MateoBeach

Interesting result to explore further. Must take note that niclosamide is entirely different from nicotinamide.

Escudilla profile image
Escudilla

I can't seem to find any reports on ENZ + niacinamide. Could you forward links?

Magnus1964 profile image
Magnus1964

See LearnAll's links posted above.

LearnAll profile image
LearnAll

I think there is a little confusion about Nicotinamide and Niclosamide here.

As MateoBeach pointed out above ...they are totally different substances.

Nicotinamide is just a form of Niacin which was a very popular cholesterol lowering medicine. It is still great med for people who have normal liver enzymes.

And Niclosamide is a med used to kill tape worms in childrens' intestines.

My links are all about Niclosamide (Not about Nicotinamide)

Magnus1964 profile image
Magnus1964 in reply toLearnAll

I think you might be confusing the supplement niacinamide with Nicotinamide.

LearnAll profile image
LearnAll in reply toMagnus1964

No. I am staying with theme that anti androgens effect can be restored by both Niacinamide and Niclosamide.

MateoBeach profile image
MateoBeach in reply toMagnus1964

Niacinamide and nicotinamide ARE the same thing. Niclosamide is not as LearnAll pointed out. I’m interested in the effects of both.

Magnus1964 profile image
Magnus1964 in reply toMateoBeach

More research.

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

Good news, keep it down............

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/12/2020 6:06 PM EST

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

A nickel’s worth. Take it with spoonful of honey and call me in the moooorning. 🤣🤷‍♂️

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

I think you meant spooning WITH honey...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/13/2020 1:34 PM EST

SPEEDYX profile image
SPEEDYX

You manage to keep working on the PC and get results....Keep it down!!

rassusukumaran profile image
rassusukumaran

Hai Magnus, I read with interest your posting on Niacinamide plus Extandi. I seem to have exhausted all options. PSA in the hundreds. I wish to try your protocol. Can you share your outcomes and protocol? How was your last PSA? Awaiting your reply.

Magnus1964 profile image
Magnus1964 in reply torassusukumaran

Unfortunately the joy was short lived. I just got my latest PSA. It went from 63.94 to 73.26. I guess I'm now eligible for the trial my research doctor suggested me.

Magnus1964 profile image
Magnus1964 in reply torassusukumaran

It worked for a few months and the quit on me. Since then my PSA has been bouncing around in a ten point range.

Shooter1 profile image
Shooter1 in reply toMagnus1964

My PSA has been going up on Xtandi. Looked like niclosamide might help. Does it really do as well as in the lab. What dosage? Looks like you took 1000 mg/day. Every day? What I found was on 7 days off 7-14 days and back on again, but that was for worms. I'm just looking for more info. Thanks.

Magnus1964 profile image
Magnus1964 in reply toShooter1

I just took 1000 mg daily. It worked for two months.

rassusukumaran profile image
rassusukumaran

Hi Magnus, Just wondering how the new combination Xtandi + Niacinamide has been working for you since you started 5 months ago .

rassusukumaran profile image
rassusukumaran

Tks for the update

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