Warriors, I hope this message finds each and everyone of you well. I have been on Xtandi 160mg since November 2022; it brought my psa from 4.3 to 0.1 or to undetectable levels in January 2023.
Last week my oncologist and I decided to test if 120mg dosage will lessen the side effects of 160mg dosage mainly-- bloating, constipation, and some fatigue.
I did experience a reduction in the bloating , constipation and fatigue on the 120 mg dosage. Even though, I like the improved quality of life, I am wondering whether I should continue on the 120 mg dosage. I am wondering whether 120mg of Xtandi will be as effective in fighting the disease as 160mg, and whether it can keep my psa at undetectable levels. Your suggestions can help. Best to you and every one of you in this fight.
Written by
Kanka99
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I’ve been on Xtandi 160 mg for2 and a half years I’ve had all the side effects but over time your body accepts them and I don’t have any now and my Psa at the beginning was 2600 and in the two years it has remained at 0.02 so I’m quite happy just to take 4 tablets a day for the rest of my life
I have been on Lupron and Xtandi for 3 months at 160mg. Started having some ventricular arrhythmias. My PSA was 0.3. My oncologist took me off Xtandi til I get my arrhythmias under control. Off of Xtandi for 10 weeks now. PSA is 0.4. I have been on high dose Vitimin C for 6 months. Seeing an EF for arrhythmias and wants me on Amiodarone 200 mg 1xd. I have not started yet because of side effects. My OC says she will start me back on Xtandi at 80mg when arrhythmias have been corrected.
I have been looking into the question of Xtandi dosage - based on the parameters established for the 160mg dose (or was that 180mg in the trials). At 160mg you get up to saturation quickly and the drug attacks the growing CRPC tumour agressively. PSA goes way down and I am left with the question - do I need the full dose to keep the CRPC at bay, or will something less do the job just as well. Trials indicate that the effect is somewhat dose dependant - but for me the evidence is a little fuzzy.
Since I have a regular PSA decline curve I can see any changes in the system that produces PSA very easily. Therefore, in collaboration with my oncologist I moved from 160 to 120 - no change in PSA rate of decline. Then I went from 120 to 80mg for 3 months - no significant change. Now I am back at 120mg for 3 months - ending on 10 feb with my next blood test. If nothing has changed I will see a PSA of about 0.07 next week, and will go down to 80mg. Works for me
I have been asking myself the same question due to the fatigue. I have had undetectable PSA for 15 months. But looking at warrior3 response I will keep going at 160
I was on 160mg dose for about 5 years however SE’s seemed to be cumulative and reached a point where my MO (Sartor) recommended I reduce the dose to 80mg. SE’s lessened and my PSA remained undetectable for a couple more years. About a year ago it became detectable again but still extremely low. I doubt that the lower dose caused it, it’s just the usual course of this disease. All in all I got almost an 8 year run of being undetectable from Xtandi along with Lupron, dutasteride and the treatments I’ve had.
My husband started out at 4 Xtandi/day and started having SEs right away. Reduced to 3/day and experienced fluid retention around his heart that made it difficult to breathe...2 nights in hospital on IV diuretics since he also has cardiac issues. Then reduced to 2/day. He still had difficulty with restless leg syndrome, anxiety and difficulty with arms/legs strength and movement. At that time his PSA started increasing. He was put on 1/day and PSA continued up. Due to doubling, MO convinced him to try 2/day again. We'll find out how that works in 4 wks. Originally MO said Xtandi would work until it doesn't. Might be where we're at.
Reducing the dosage is a plan. After all, you are trying to "live" with your cancer not "kill" it. If your PSA begins to rise go back to the full dose.
I have been on Xtandi (160 ml) and Lupron since January 2018. Last year (March),my MO suggested that I stop Xtandi in order to be able to reuse it,since ,if it stops being effective,
it can't be used again. I decided to stop Lupron instead,as when I started the treatment he
had mentioned that Xtandi is 90% of the therapy and Lupron the rest. I was more concerned
with SEs of Lupron on my sceletal system and I was not so much worried with fatigue.My
PSA is still below 0,08.Last week I decided to reduce Xtandi to 80ml ,.as fatigue started being
a problem and had my Doctor's consent.He told me that balancing the fight of cancer and the
SEs, is up to me .Since I had my prostate removed (Dec 2008) I have had radiotherapy and was on ADT from 2014 to 2017 (bicalutamide +one shot of triptoreline every 3 months). In 2017 my PSA went up to 35 (small metastatic lymph nodes) despite an other cycle of radiotherapy.As I wrote above, I went on Xtandi and Lupron in January 2018 and I am o.k
until now.Age 79 Gleason score7(4+3). I am sorry for the details ,but I believe that in health
matters are very important.
I hope that my story is of some help and I wish you all the best
160-120-80 worked well for me. Been on vacation for 10 months. When I go back it will be 80. My choice.
I like what Magnus posted. That’s my same thoughts on the subject.
Re: “Reducing the dosage is a plan. After all, you are trying to "live" with your cancer not "kill" it. If your PSA begins to rise go back to the full dose.”
Took me a few years to figure that out. (Live with the cancer) to obtain a QOL.
It is a trade off only if you have a rise or rising PSA, or else it is a more humane way of treatment. I am on 80mg Xtandi daily and my PSA remains consistently low for 6 months now. So try it and let the result tell you.
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