I began taking Xtandi after my 3rd dose of Lu177 in April 2019 because the clinical doc for the day said my previous chemo would have made my Pca sensitive again to Zytiga or Xtandi, and that taking Xtandi while getting Lu177 would boost PsMa expression and thus make Lu177 work better.
After my 4th dose Lu177, Psa nose dived and then by November 2019, Psa had dropped from 25 before Lu177 to 0.32.
But then in July 20120, Psa was back up to 30, and I had 2 more doses of Lu177 because I still had high enough PsMa expression. But after 6th and last dose Lu177 in October 2020, Psa went 7, then began to double each month for 3 months, and I could not have more Lu177 because new bone mets had low PsMa expression.
So when I got to my first Ra223 dose on 26 Feb 2021, Psa was 180, and Psa had increased 2.7 times in a month. Its about 260 now.
Yet my onco wants me to keep taking Xtandi.
I cannot find any info online about what happens if I continue taking Xtandi long after it has ceased doing what it is meant to do, ie, interfere with Pca growth by blocking testosterone from adrenal glands and adding to what ordinary ADT does, and I am continuing ADT. But what side effects are there if I take Xtandi when it appears to be doing nothing at all that's good.
Is the Xtandi now making Psa rise faster ?
Patrick Turner
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Patrick-Turner
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I have read in a research paper recently what your Oncologist is saying. The paper did claim that Chemo can RE-sensitive many men to Xtandi and Zytiga. I am not able to recall the title of the paper.
After Lu177 had done all it could, and Psa began to rise fast, and while taking Xtandi, my onco never suggested I have chemo to re-sensitize my Pca to Xtandi or Zytiga, but he only suggested I make up my mind for getting chemo or Ra223, one or the other, and I felt chemo would not have worked just like it didn't work in 2018. That chemo probably did make myPca sensitive to Xtandi, but Psa was only suppressed for 8 months. Then Psa went from 7 to 250 in 4 months. I want to know if staying on Xtandi is fueling the Psa rise or not. Patrick Turner.
Yes, I had blood tested Nov 2020, and I was not Brca1+2 positive, and 13 other genes thought to make me more likely to get Pca were not found, so I won't get PARP therapy. But the geneticist who took my blood samples said the world wide library of listing gene defects that cause various diseases was rapidly growing, and said I should have blood tested again in 3 years. It was all free under out Medicare cover. But I may not live to be tested again.
"ie, interfere with Pca growth by blocking testosterone from adrenal glands" That's what Zytiga does. Xtandi is an anti-androgen, blocking the androgen receptor and its translocalization into the nucleus. There is a known "enzalutamide withdrawal syndrome," but it seems to be rare. It does increase fatigue, though. What about estrogen patches instead?
Thanks for pointing out the difference beween Zytiga and Xtandi which I had forgotten.But both these add on drugs to ADT don't work for very long; I got both to lower Psa for 8 months, and not reduce the advance of the Pca.
I don't get bad side effects when stopping these drugs, and don't get fatigue. What would estrogen do to Pca in my bones? Its a female hormone, and there could be queer side effects.
Its an old fashioned remedy that no doc here has ever mentioned.
I am going to talk to makers of Xtandi today, Astella Pharma about taking Xtandi long after its having SFA effects.
Not “queer”, but may make you connect better with your “sensitive side”. No seriously, you can feel very good with a little estradiol on board. Worth a try.
I am 125% hetero inclined, but dealing well with reality of being a Feather Duster instead of a Hot Rooster. I went right along with all wymmin demanding to be granted full wymmin's rights all my life. That idea seemed to minimize the danger of being murdered in my kitchen by the few ladies who spent at least a tiny fraction of their time living with me, but all getting red-hot angry while doing any housework, ever. Was I sensitive, queer, woteva? I really have no clue at all, but the ladies all said I was a really good root, and highly tolerant of criticism, etc, but pathetically boring so relationships didn't last long, and I passed the time by working, doing a bit of cycling, and never working in any office. At least I had a few crumbs of love to eat as they fell off the Table Of Love where others seemed to sit around gorging themselves to be happier than I was. Maybe the less said, the better
That horse is no longer running for you. Some possible options to consider and discuss. 1. Stop it and see if PSA drops as enzalutamide withdrawal (like bicalutamide does often). 2. Yes a course of chemo can sometimes resensitize to Xanti or Zytiga. 3. Combine Ac225 with Lu177 for better action on bone sites. 4. Add Veyonda (idronoxil) from Noxopharm under “compassionate use” with Lu/Ac treatment. 5. Niclosamide is a repurposed anti-helmic that may resensitize to Xanti esp if you have AR-V7. niclosamide.org/cancer-type...
My Xtandi worked for about 18 months, then did Zytiga for 3 months, with no improvement. I was on Xofigo (Radium 223) for 3 sessions, PSA shot up to 350. I was about to start a clinical trial for CART T, but Cat Scan detected, later confirmed via biopsy, that I had a small lesion in my liver, making me ineligible for the trial. Now on 2nd dose of double chemo, Docetaxel and Carboplatin, hair falling out, fatigue and nausea for 10 days, typical side effects. I don't know the advantage of continuing Xtandi, seems like not worth the side effects.
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