An update. After second round of Docetaxel/Carboplatin chemo (12 total infusions, 6 per round), we are again rechallenging with Xtandi. Had it first back in 2016 for about 12 months until cancer found a workaround.
In early 2018 after chemo, Xtandi rechallenge brought PSA down from 1.3 to .7 for 4 months.
This time PSA rocketed up to 48 after chemo, but in 2 months, 3rd use of Xtandi has brought PSA down to 14. Praying for continued strength of Xtandi, as each month of effectiveness pushes out need for another round of chemo or other treatments.
Best Wishes. Never Give In.
Mark, Atlanta
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vandy69
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Truly amazing results from Xtandi chemo combo. Have not read of this protocol before but I know the Xtandi side effects can be tough from my husband’s experience.
What chemo are you having now? Carboplatin was added for my liver mets and it worked.
Was hospitalized for 16 days in late April with high temperature. Was identified as an infection from Enterococcus with Ampicillin as the the “cure”. Had a 24/7 IV drip of Ampicillin for 6 weeks and now take oral Ampicillin 3 times a day for up to 12 months. Was source of your high temperature ever determined?
The source of infection was never determined- let me clarify-
Was hospitalized first time before chemo and after liver biopsy- infection in blood- did 8 day hospital stay and IV antibiotics until end of April-
Daptomyacin.
Then first chemo 5 day stay with undetermined origin of fever-
Another fever spiked this week and it was of unknown origin again- so med once now has me on Ciprix- but MO believes these fevers are now “tumor fevers” something to do with releasing cytokines during chemo.
Presently only taxotere-
Not carboplatin.
I have extensive bone Mets and liver Mets since March this year.
I do not think you have bone Mets?
Lower dose taxotere at least 10 treatments- one every 3 weeks-
But good to know that you can use Xtandi after-
Only got 9 months on Zytiga then 3 months on Xtandi before both failed.
Can you please explain the low dose taxotere. About two years back I had to stop taxotere with the first infusion because of high toxicity. That time my doctor told me that next time I can take low dose taxotere. But I didn't attempt. So please explain how it was done and the after effects.
I'm glad that Carboplatin worked for your liver mets. There was another discussion on that topic about whether it would be effective if the liver mets were not neuroendocrine. Did that factor into the decision?
I saw in your profile that you had tissue from your liver biospied. I'd like to know what they found if you don't mind sharing that.
Biopsy of liver lesions was to determine what they were—liver cancer or prostate cancer mets in liver. Answer was prostate cancer mets which Med Onc said was worse than liver cancer.
Well finally someone not complaining about the side effect of xtandi. I was beginning to get a notebook effect from hearing the complaints. Othe nadas chime in.
My husband is in the side effects group but he doesn't complain as he holds it all in and has for his 18+ years dealing with this crap. He went to half dose due to SE and has been on/off it for 1.5 years. It's starting to not lower the PSA anymore and when that happens, believe me, it's a desperate feeling. Enjoy it while it works.
I remember when I first went on Lupron two years ago. When I read side effects and blogs I thought holy shit! Then one guy out of say 50 post said he lifted, and ran and had a similar attitude as I did ..and said few hot flashes no big dealt that was really was beneficial to me . When you feel tired get a little work out in , or a good walk...then take 15 min.and nap....nothing wrong with that ...My opinion only here....Seems a lot of people stress about everything they eat and the effect of stress is much more detrimental . For the guys who love being a chemist and food becomes a hobby they do and love to watch their numbers that is all good as long as they are happy about doing it...Me I eat clean , stay active and I really do not have time to become a food chemist... I hope everyone the best.
Blue Skies.......A Grounded Sky King......
It seems the guys that do really well go on with their lives and their are many out there...we are not bragging but trying to let others know we are living pretty normal lives ...since we have been diagnosed with the Monster we even cleaned up a little , and focus what is important....You ever notice people bitch about the weather??? what a waste of time ,,,crappola I am glad I am here to feel the heat, cold, rain,
I think I'm in the same camp as pilot52. Exercise and attitude are important.
A Sky King - cool! Me? - 210's and Cardinal 177s mostly. I miss flying (but not the time and expense of keeping an airplane). I may be a little older too (but maybe not), at almost 62.
I've been on Xtandi 14 months now (after 6 rounds of docetaxel) and my PSA is just starting to show itself from undetectable. My peak PSA was 29. Extensive mets in pelvis. One on a rib and a nodule beneath my lung. I think I have one of my left arm too. Something pulls there occasionally when doing curls.
Our Arizona monsoon rains up here in the mountains have kept me off the bike for a few days. It looks like a beautiful day today though, so I'm going to go out and real in 60 or 70 road miles. Three years ago the 70 mile ride was under 4 hours. It'll be over 5 today. It's tough coming back from injury. Broke my wrist in two places and ribs in 4 OTB on the mountain bike. Was trying to prove some whippersnapper couldn't catch me on a steep rocky section. Accident due to ego.
With my relative inactivity in a cast, my boobs decided to take off. Estrogen imbalance due to the ADT and the enzalutamide. Talked my doctor into tamoxifen which worked wonders! In just two months the boobs and most of the belly fat I've accumulated over the past two years has melted back. I'm putting muscle back on too. My weight hasn't changed at all. 172 pounds. I'm about 5-10.
8 months of my Xtandi stay was at half dose (two pills). Just couldn't hack the wonkyness. I recently discovered that L-Theanine clears my head and am back up to full dose. Wondering if I should take some of the Xtandi I banked and try 6 pills a day. Hmmm.
I'm experimenting with Ursolic Acid too. So far, I really like the stuff! I think it's contributing to my recent strength and muscle gains. Speed is up, power is up, endurance is up. Supposed to be good for my bones too (as is tamoxifen). PSA check this Wednesday. If all is good will keep pushing it until scans next month. Anxious to see how that plays. Lots of data says that this stuff kills cancer (if you can get enough in you - poor bio-availability).
I think you are right. If I am PSMA sensitive, would probably qualify for VISION trial, but only a 66% chance of Lu-177 arm. Interesting thought about trying Zytiga again. Thanks.
I agree with Nalakratz , you should also consider the trials with Lu 177 PSMA and Ac 225 PSMA. These systemic therapies have the potential to resensitize the cancer to abi or enza besides killing cancer cells expressing PSMA .
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