I have metastatic prostate cancer

[Carplake]

Is anyone doing IV vitamin C and Lupron injections?

[Tall_Allen]

IV Vitamin C has proved to be useless. It is in a trial combined with docetaxel.

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

[TC007 in reply to Tall_Allen]

Allen, I know you are dead against anything that's not proven in clinical trials but the problem is you will never see a well funded clinical trials on natural cure/QOL improvements. Western Big pharma can't patent Vitamin C or marine weeds like Mozoku. I hope you agree that Japanese or Chinese oncologists are not idiot to prescribe Fucodian or other marine items with regular treatment!

[Tall_Allen in reply to TC007]

Another member just yesterday criticized me for recommending a therapy that has been unproven in a Phase 3 trial - I can't win. 😞 It's strange you would post that right after I posted a link to a clinical trial that proved Vitamin C didn't work. Since I posted that, another trial proved it was ineffective (they stopped the trial for futility) combined with docetaxel too:

clinicaltrials.gov/ct2/show...

If there is no proof, you may as well see a voodoo doctor. I have not heard of Fucodian or Mozoku. What is the proof that they work? (Chinese oncologists giving it to patients does not constitute proof)

[Sunlight12]

Hi Carplake,

I know there was at least one person on here who is or was using IV Vitamin C because I made note of it. I believe he was combining it with low dose Zytiga. I can't think of which member it was at the moment. Hopefully, he'll see your post and respond but if not, please reply to me here and I'll see what I have for info in my notes of his post.

Very best wishes to you on your journey -sending good energy your way!!

In solidarity,

Sunlight

[Hidden in reply to Sunlight12]

I like your attitude! 👏👏👏👍

[Carplake in reply to Sunlight12]

Thank you Sinlight12. I am used to hearing that IVC doesn’t work, but you never hear how much vC is being used and for how long. My PSA went from 101 to .5 on Lupron and vC. I started back on Xtandi early March and have bt on Apr 24. We will see.

solidarity for sure carp lake

[Sunlight12 in reply to Carplake]

Wow - that's wonderful news and exciting feedback, Carp Lake! There are many men here doing their own n=1 studies and showing that a number of paths and modalities can be helpful. Please keep us posted on things go for you! Sending some extra good energy your way for your bt in April...and beyond!!

-Sun

[kaptank]

The lupron or something similar is a must. If you are metastatic you should also be at least taking one of the anti androgens (abiraterone, enzalutamide) or docetaxel. Metastatic is serious - ADT plus.

Regarding IVC tall allen is right. I did IVC about 15 years ago (before I went metastastatic). I persevered for about 6 months 4 days a week at huge doses. There was a placebo effect but 4 months after I was back at about the point I would have been had I not done it. There are occasional anecdotal positive reports but the best evidence is it doesn't work. But I didn't get a cold.

[dhccpa in reply to kaptank]

What was the placebo effect? Less pain? Lower PSA? I'm curious how a placebo effect would manifest itself.

[kaptank in reply to dhccpa]

Sorry, I thought I replied. PSA trended down for a couple of months, then went up to the area I would have been if I did nothing. This was before ADT when PSA was gently trending up from a low base.

[dhccpa in reply to kaptank]

Interesting. With all the "alternative" substances and techniques available, maybe we should change to a new placebo every few months!

[Hidden in reply to kaptank]

Hey Kaptank! I commend you for trying it . I did too. I think it helped save me . But I did so much other stuff that it’s hard to narrow my remission down to one factor . I won’t knock anyone for doing anything that the believe can help. Try anything ! I did 3 Amazonia drugs with shaman friends and that healed me spiritually and dropped my fears of pc and death . Of which i had many at the time since I was close . I would still do c today once in awhile if it was cheaper and I was closer to my old dr . He’s 400 mile drive now from us . Good luck!

[larry_dammit]

Beware of the vitamin C issue, my oncologist told me upfront. That he almost lost a patient due to the interference that vitamin C had with the other meds.

[Hidden in reply to larry_dammit]

My pc specialist told me that high dose vitamins of any kind are shown to shorten life . The RO told me no anti oxidants during 8 wks imrt . I did both it anyway .the entire time . Big time . I was given 50/ 50 shot by my uro to survive treatments . Whoo hoo! Of course , I’ve prayed more and begged for mercy every day since . 🙏😔

[kaptank]

Larry is right. An additional risk is that if you are metastatic it may trigger inflammation and pain in mets. Another complicating factor is the effect of lupron - it will reduce PSA and may lead to confusion as to whether the IVC is working or not. In my case I did my IVC experiment before I went on ADT, so my PSA was slowly trending up from a low base.

[kaptank]

By the way, make sure you have the best oncologist you can find and most of all, make sure they specialise in prostate cancer. Generalists are out of their depth with this one. You obviously have someone who recomends lupron but I am surprised you are not considering something like abiraterone (or even docetaxel chemo) in addition. Hit it hard and early. Metastatic is serious. It can be managed for a time but not cured.

[Carplake in reply to kaptank]

Thank you for your comments. My oncologist is with the U of Michigan. My insurance just approved Xtandi. It has been 2 months since my diagnosis. I get my next Lupron in a month and she will add ? for the bone. I’m trying to get my arms (mind) around what is happening. Thank you for listening.

[Sunlight12 in reply to Carplake]

Always feel free to ask questions and even vent if you need to! This whole community is either people diagnosed with PC or supporters/caregivers to those who have. Everyone is happy to share any knowledge they have, answer questions, offer guidance, listen, give encouragement, etc - whatever you need. Please reach out - helping others is a way for all of us to give back and to keep fighting this disease.

-Sunlight

[SteveTheJ]

You're asking if anyone is taking vitamin C intravenously? I'm not doing that but I've been taking Lupron for 2+ years.

[Carplake in reply to SteveTheJ]

Do you recall when you first started Lupron that you had discomfort in the Testicles and did the testicles swell in the beginning.

[Hidden in reply to Carplake]

I didn’t swell . But had pains and they shrank down to tiny as chemical castration set in on me . 18 months Lupron and Tak -700 leveled me so much I chopped and dropped the lupron shots . No more pain no worries about the family Jewels causing problems again .

[SteveTheJ]

Yes, I recall. No, they didn't. You should report that to your doctor. The main adverse side effect I've had from Erleada + Lupron is fatigue. My oncologist prescribed Provigil which has been very helpful. (FWIW)

[HerbieP]

I did iv vitamins c for 6 months, did nothing except empty my bank account

[Carplake in reply to HerbieP]

Thank you I will report my symptoms.

[Hidden in reply to HerbieP]

Sorry about that . I spent $30 k my first two years on alt med . For me it helped! ✌️I do $700 per month still in nutrients ? 😳

[j-o-h-n]

Greetings Carplake,

Here goes my spiel:

Would you please be kind enough to tell us your bio. Age? Location? When Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.

Note: Answers are for your benefit, not mine.

THANK YOU AND KEEP POSTING!!!

God Bless our past and active military service personnel.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/30/2022 8:19 PM DST

[skateguy]

I did many years ago (7-10) over the course of a couple of years. It did not cause any harm. If it is beneficial, it’s effect is so slow that I could not tell. So the bottom line from my experience is there wasn’t any harm or benefit that I could determine.

[Carplake in reply to skateguy]

Thank you. Do you recall the dosage and frequency.

[skateguy]

My advise is the same for prescriptions and alternative solutions. Do what you think is good for you. Ask questions until you are satisfied. I have tried the so called SOC drugs/procedures and the alternative treatments you may come across on the internet or somewhere else. I view them as all the same. Come to a conclusion that you believe is best for you. There isn't any guarantees in life. You may get frustrated that your not getting the response you want (like this response, haha). There isn't a magic bullet, formula, drug, recipe, etc. It is a shame that the medical industry considers us as all on palliative care. Maybe that is why some of us are frustrated.

[Carplake in reply to skateguy]

Thank you for your response. Our health care system needs to shift to our health care not to the $$.

[Hidden]

I did it bi-weekly for nearly 18 months . We added dmso to the ivs once in awhile . My urology shut down with pc tumors blocking urethra and bladder , k , failure and tubes out of back and foley for 18 months of hell . I’m convinced that the 50 gram ivs helped me out of that hell ?I did it During and after 8 wks imrt plus Lupron and a defunct adt drug( Tak-700 ) ..still taking the Tak pills stopping adrenal production ,chopped the boys in2017 dropped the lupron . I’ve Been in a no signs remission six years now . I did a lot of other nutrients veggie diet and alt med and high Thc oil also to date .. Each to their own . Not much on this cite beyond SOC .. I was in such sad shape that I tried a lot out of the box . I feel that we must do more than the minimum recommended by western med .. contrarian to this site . Take care .

[Tall_Allen]

You sound like a conspiracy theorist. I just demonstrated that even promising supplements get to go through determination of evidence. B17 is poisonous. Follow science or follow internet scams - the choice is yours.

[TC007 in reply to Tall_Allen]

What is "Science"? Something that's already established...So called Science rejected most important theories in last 500 years and then later acknowledged it...you are rigid in ur insights and it makes sense because you are cured!...millions are uncurable as per "Science" and want to try out anything which can help...

[Tall_Allen in reply to TC007]

Science is every patient's best chance of finding anything that can help. You ignore science at your peril. Ask Steve Jobs. My parents, who both died of cancer, were incurable. Your telling me I couldn't possibly understand and calling me insults like "rigid" don't help your case - such ad hominem remarks only reflect how weak your arguments are. I recommend you put your confirmation bias aside, read and try to understand this:

prostatecancer.news/2022/07...