A friend of mine has been on Lupron/Xtandi for 23 months. His PSA was holding steady at .3 until it jumped to .9 then 1.2 and 1.4 these are monthly readings. He had a bone scan and has mets on his spine and ribs with extreme pain in the right hip. Doc said he has crMPCa and has12 months to live and wants to put him on chemo which would buy him a year. Said Zytiga and Apalutamide would not be effective because of cross resistance and does not recommend Provenge. Based on articles I have read I told him to try adding Indomethacin and Ranolazine.to his current treatment. His last PSA was .9 and the pain in his hip is gone. So far looks promising.
Gus
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I heard that pessimistic life expectancy estimate and it elicited some thoughts. The number on a PSA test result is not what kills you. I was alive with a starting PSA in the thousands over 5 years ago, and later with a PSA of 95.0. I've been on added Xtandi for 27 months. Rounded off to the nearest whole number, my PSAs have been between 1 and 3 for over a year. My latest monthly result actually went down from 3.1 to 2.9. Everyone's body and biological responses to treatment(s) are different. Your friend might be able to get more time out of Xtandi than expected, even if Docetaxel chemo might still be next on his recommended treatment options list. A second opinion from an advanced prostate cancer expert somewhere else might help in considering the Full range of available treatment options and/or clinical trials.
I was on 2 5mg prednisone with Xtandi from day 1. Questioned it immediately as thought was mistake. Was told it was to avoid fatigue. MO agreed to cut to 1 5mg in morning last month. DO notice increased fatigue, but long term effects of prednisone not good. Perhaps MO doesn't think I have a long term? Xtandi for 18 months now. Maintaining at 0.2 for last 6 months.
I remember those days. Who needed girls. We've got booze and cars. And one by one we fell when we figured out we could have booze, cars and girls. And our togetherness slowly faded away as we had booze, cars, girls and babies. And then we needed jobs to support the booze, cars, girls and babies. And we became our parents.
I thought the best numbers to watch is Alk Phos?? My dad has Mets to ribs, 2 lymph nodes, thoracic/lumbar, hips..he just started in January on Xtandi/Lupron/Xgeva.
Had his prostate removed in ‘09 only been doing ADT shots for past 9/10years. He is fatigued but manages to work FT in auto paint/bodywork shop. Some pain in right hip. His AlkPhos in 700+
I’m praying labs next week are headed in right direction. Any question I should ask MO? Thanks Kim
It’s hard to say if pain is better because of new regimen because he got a steroid shot in that hip on 1/31 to see if it helped..its just hard to say because he will not complain. He is mobile and still working at almost 76 years old.
OK....wait for his PSA and ALP....if improved significantly, it may be just musculoskeletal pain...several on this forum have stated pain improved as ALP and PSA dropped... best of luck for your Dad...God bless you both...
Clinical Trials are really beginning to tic up...Duke and MD Anderson offer several. It is easy to get in for a consult. There is national website just for clinical trials..I am not metastatic at this time so I do not qualify so I stopped searching..However, now when you first get mets you do not have to use what is out there and wait for it to fail. There is a disulfiram and copper study open at Duke..This is the old Antabuse drug for alcohol...Look into it and others...I fear local oncologist know the published cookbook but really do not search out what's going on....Sloan , Mayo all of these places are in the hunt. You are a good friend to be proactive....
I'm 7 years out. I take Lupron and they added Xtandi after 2.5 years. I applied to NIH clinical trial; Xtandi and prostvac , or Xtandi alone (with Lupron of course). I've gone 3.5 years on Lupron and Xtandi. I applied to NIH because they pay to fly you after the first trip. You get tests up the wazooo (blood, PET, 🐈, and bone scans all paid by Uncle Sam. They also pay for Xtandi which I never could afford. If you're retired you might give them a call, jump through a few hoops and see what clinical trials are open. The reason I wrote this is because I also took lots of aspirin during the first 2.5 years. I had to stop due to sinusitis also NIH told me to take Aleve. My point here is about controlling inflammation. Apparently it's a major factor in PCa. For those that are retired consider clinical trials you might snag something that works for awhile.
Also you get a stipend for food and lodging. They'll fly your butt to Reagan, Dulles or BMI then there are shuttles to take u to nih complements of out tax dollars.
Your Uncle Sam is GREAT. Here in India, there is no such concept. The crooks in power will not fly your butt anywhere, instead they will kick your butt with a good deal of enthusiasm. The travails of living in the third world
Isn't it amazing how a thinking person with PCa can offer advice that is life-saving and life-improving (lookin at you Gus while a mediocre oncologist just gives up on a man and tells him he's got 12 months. This is why forums like these are lifesavers for so many people and their loved ones!
You're a goLd buddy... If I were in Nam with you... I would have let you be point man and lead me those those rice paddies... and the tunnels but don't dare touch my hooch maid.
Gus, I know I have raised this issue before. I am a bit anxious as my PSA is rising after 1 year on Zytiga + Dax as Zytiga + Prednisolone did not work for me. Is it a good idea to try Zytiga + Indo first as my doctors have not put me on Xtandi. In some of your comments, you seem to imply that this can knock down ARV7 resistance and resensitize PCa to Zytiga.
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while a mediocre oncologist just gives up on a man and tells him he's got 12 months. This is why forums like these are lifesavers for so many people and their loved ones!
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