My dad with stage IV (Neoplasm Of Prostate, Distant Metastasis Staging Category M1b: Metastasis To Bone) is on Lupron and complete 6 doses of docetaxel which brought his PSA down from 121.15 to 24. Given his PSA did not go below 5 they want to start Xtandi. My questions:
1. Anyone experience similar results, what was your doctor's treatment recommendation?
2. What's the longest anyone has been on Xtandi?
3. Has anyone tried the Budwig approach or other diet and lifestyle change to support conventional treatments?
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2zuzu612
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I'm on abiraterone after docetaxel, and for the purposes of discussion here let's consider abiraterone to be equivalent to Xtandi in that they're both relatively new second line hormonals with similar efficacy. To answer your questions:
1) My MO's plan all along was to put me on abiraterone right after docetaxel regardless of the results of chemo. Lupron alone dropped my PSA like a rock, while the docetaxel seemed to help get my alkaline phosphatase (a marker of bone damage) down into the normal range. While my PSA was low, it was the addition of abiraterone that made me undetectable.
2) Some members here have been on abiraterone for over 5 years. Probably the same is true for Xtandi but I haven't been paying as much attention to them. Nobody has been on either drug for a decade yet because they're too new.
3) I've made some minor lifestyle changes. I lost about 10 lbs early on due to side effects and have managed to keep the weight off. I've gotten my cholesterol back under control and my Vitamin D levels up. Exercise is important but as I was a runner for a decade before diagnosis that doesn't really count as a lifestyle change. Still, being in shape has made treatment much more tolerable.
The lower the PSA the better. Adding Xtandi or abiraterone would be a good choice for your dad. He might also consider genetic testing as the results might indicate other treatments that could be helpful. I'm sure others on the forum would recommend getting second opinions and looking into clinical trials. There's so many options it can make your head spin!
Thanks so much for the info. The doctors my dad is working with are great but replies like yours are helpful and hopeful. His alkaline phosphatase came down to normal during treatment so we are super thankful for that.
3. Has anyone tried the Budwig approach or other diet and lifestyle change to support conventional treatments?
Yes, I have. Budwig, ketogenic diet, vegetarian diet, Mediterranean diet, more aerobic exercise, weight lifting, meditation, yoga, breathing exercises, and much more. There is a lot that you can do.
Did they work? The only one that had a marked effect was the keto diet. It's a very demanding diet, and you have to make at least daily measurements to keep track, but once I got it dialed in and stayed in deep ketosis for weeks at a time, my PSA dropped for 8 months in a row. It had never done that in many years of trying other things.
I can't prove it was the keto that did it, but the drop in PSA followed my consistently attaining a glucose/ketone ratio below 1. But after 8 months, the PSA started rising again. Was that keto? Did the cancer adapt to the diet? I have no idea.
Did any of the other things help? I can't prove it. They may have slowed the cancer; I'm 12 years into this now, soon to be 13.
One thing I'm pretty sure of is that none of these things hurt me in the slightest. I'm in the best health of my entire life because prostate cancer got me off my butt and made me pay attention to my body and my health.
So read up, think about what feels best for you, what might work, and try it. Try several. If nothing else, it feels good to do something positive rather than just sitting around waiting for more bad news. That alone is good for you.
Thanks for the well wishes and congrats on being so proactive and all 12 years! I so appreciate what you have shared. Did you do the full Budwig diet or just the sulferated protein and flax mixture?
I have been on lupron,now eligard and Xtandi since finishing taxotere. Can’t remember what the PSA was when I finished chemo. But PSA has been <0.05 for the last 30 months. I have been on Xtandi now for 32 months
My PCa onco, Dr. Sartor, said there are ways to rechallenge Xtandi when it eventually fails, one way is using BAT the other is chemo-which kills the PCa cells that have become resistant and allows Xtandi to continue working. These don’t always work but he’s had some success with both. I’m hoping I can continue on this run for a long time before having to resort to that.
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