Xtandi now getting first line approval - Advanced Prostate...

Advanced Prostate Cancer

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Xtandi now getting first line approval

larry_dammit profile image
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Had a talk with my oncologist yesterday, Xtandi is now being recognized as a first line defense for stage 4 with hormone sensitive Mets. As in my treatment doctor did the following. Taxotere Chemo ,with lupron and Xgeva shots monthly, when the chemo was over he put me on the Xtandi pills. 35 months and counting. I know this is the simple version of the finding but forgive me for the chemo brain 😀😀😀

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larry_dammit
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greatjohn profile image
greatjohn

I did the Lupron and chemo right away(after being declared stage 4)...and waited only about 4 or 5 months after Chemo before they got a reading of 3 elevated PSAs(called me castrate resistant)...and put me on Xtandi. It's been only one year. I wouldn't say it's been a "magic bullet" for me...my PSA went down a little and then has gradually inched up since then....lowest 0.88 and now it's back to 2.69. I'm wondering how long I can stay on it before then decide for the next atrocity (I mean treatment). I had a hard time tolerating it after about 3 months...but using extra stuff(BIRM, Fenben the hookworm med, etc)...I've managed to stay on the full 4 a day dosage. I keep hoping for SOMETHING that will give me a few months of PSAs going the "right" direction. It's been an uphill climb for the past 3 years basically. I certainly hope they come up with something better than Xtandi (soon).

if you've lasted this long and done that well on Xtandi...COUNT YOUR BLESSINGS.

gJohn

larry_dammit profile image
larry_dammit in reply togreatjohn

Wow. Guess everyone is different, that’s what they always say about me. Couldn’t help but notice you mentioned the hookworm med. did it help you .? My oncologist actually new about it when I approached him about it. 😜 said we would wait till what we’re doing doesn’t work anymore. Hang in the John 🙏🙏😡😡

greatjohn profile image
greatjohn in reply tolarry_dammit

I'm feeling and "looking" great. Lots of energy...been cleaning, shopping, walking the dog a mile...(in our hellish heat)....since waking up at 7 am. My "numbers" are the only thing not "looking good"...LOL. I'm crediting my energy and lack of pain to the Fenben...and from what I read on the website...the sooner you start.....THE BETTER. My next PSA should be into the Fenben protocol long enough to show a difference (if it's working.).

Thanks Larry & good luck to you!

John

Larry - you are in luck dammit! There IS something you can do but you may be in for a fight to do it. Get yourself 25 grams of Vitamin C via IV per week and adjust the Xtandi dose downwards as much as you can when the numbers go down. I was taking just ONE Xtandi capsule a WEEK (not the usual 4 a day) the night before the drip, and that gave me 6 months of undetectable PSA (and saved my life - I could not get to the toilet when I started at the usual 4 a day for just 2 weeks before reducing - I could not afford to buy another box!). Now, 19 months later, I take one capsule a day every now and then to give the kill a boost, but most days take none. Still experimenting to get the best combination. My last PSA number 2 weeks ago was 1.32, so this does slowly stop working (like everything else).

These levels of Xtandi are way too low to work as intended (block the testosterone receptors). Also too low to get the Xtandi side effects.

The bottom line is NOTHING ELSE comes close to the 80% kill I was getting every week at the start. There is NOTHING ELSE out there that actually kills Pca in such a short time, and gets you alive again so fast. It does not slow the growth like everything else - it actually kills. Perhaps this should become the FIRST treatment used, LONG before using a knife or hard Chemo like Docetaxel. My very enlarged prostate shrunk and my bladder functions returned to normal. Why cut it out?

Obviously there is a new unknown mechanism at work here that I discovered by pure chance, but nobody seems interested (I have also informed lots of supposed serious cancer sites) in pursuing this line because Vitamin C is involved. The manufacturers know, but do nothing. Perhaps short sighted, as there is a good chance the Xtandi/Vit C combo may kill OTHER kinds of cancer too, and that would get them billions in sales!

So there it is - Xtandi doubles or trebles the kill one usually gets from intravenous Vitamin C, and there are zero side effects. It also saves a whole lot of money!

GO for it - you have years of good quality life ahead of you.

afab profile image
afab

Larry, I’ve been in durable remission (psa <0.1) for 5 years. On Casodex for 1 month, Lupron for 5 years and Xtandi 43 months. Original diagnosis in 3/14; Gleason score 8 with 2 bone Mets. Oncologist originally gave me 1.5 years to live two years ago. Six months ago she told me that PC would not do me in, something else would? Now I’m wondering what “something else” might be. 😎I’ll be 80 in 2/2000. Still have a daily cigar with a glass of single malt scotch.

This is clicheish: “Yesterday is history. Today is a present. Tomorrow is a mystery.” Live life to its fullest brother. Keep the faith.

ellie2211 profile image
ellie2211 in reply toafab

❤️ wishing you the best.

larry_dammit profile image
larry_dammit

Wow, that’s great, I’m looking forward to that kind of reports Keep up your Dailey habits 😀😀🙏🙏🙏

ellie2211 profile image
ellie2211

Why xtandi vs zytiga? Did the onc mention anything?

larry_dammit profile image
larry_dammit

No just thought it would work for me. My dad is on zytiga and it’s working for him.

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