Xtandi update

I started Xtandi August 15, PSA 5.35. My PSA on October 13 was down to 2.04. So it seems to be working. Side effects have gotten worse , extreme fatigue, mild nausea, severe bloating and gas and shortness of breath on exertion. For pain management, I am now on 72 hour Fetanyl patch 50mcg/hr plus Hydromorphone 2mg every 2 hours, and 220 mg Naproxen sodium each morning. This generally keeps pain below level 4. Still experiencing short spikes of pain to, level 8 or 9, in ribs and spine if I move wrong. Quality of life has declined but still able to do most daily activities and play bocce most mornings. Only able to walk or stand about 5 to 10 minutes at a time without increased pain. I am now 18 years out since diagnosis in1999. I have recently given in and gotten a handicapped parking sticker and using an electric scooter for shopping. I hope this is helpful to others on this journey abou what to expect. A summary of my treatments and progress since diagnosis is in my profile. May the force be with you.

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  • After starting on Xtandi, I noticed that I became tired a lot of the time and CONSTIPATED. My oncologist lowered my dose to 3 tabs per day rather than the usual 4 tabs -- this helped with the tiredness. As far as the constipation, I spent months trying to get a handle on that -- I finally found that taking 750 mg of Magnesium per day gave me regularity. I did not have any other symptom. I hope you get some relief -- what you're experiencing is terrible.

  • Miracle lax and calcium docusate stool softener seem to be handling the constipation for me.

  • Not on Xtandi but found that 4 oz of prune juice at breakfast and 4 oz at dinner did the trick for me. Dulcolax when that fails.

  • Thanks for the update Chascri, I am glad you are mostly able to control the pain. It seems the xtandi is working, I used to do it in the evening before bed and sleep as long as I needed to , I hope it reduces pain level too. Good for you for getting a handicapped parking sticker. Also I am glad you are continueing with the daily activities and also playing bocce.

  • Have you thought of palliative radiation for the rib pain. My husband just finished 10 radiation treatments for rib pain and it worked really well! He had no side effects from the radiation and treatment was 10 minutes a day.

  • I have had multiple palliative radiation treatments in the past, including Xofigo,(see my profile} but the mets are so numerous now I suspect that is why my doctors have suggested starting Xtandi for a more systemic type treatment that hopefully will shrink the tumors now causing pain. But, I will ask the side effects of the Xtandi have definitely decreased the quality of life.

  • Congratulations on being an 18 year survivor. I have most of the same Xtandi symptoms. The way I look at it is that it's keeping me alive, mobile and a daily gift of time with family and friends.

  • Me too, helps me to keep a positive attitude. Also, when asked I answer health problems at this age are the price we pay for living past our average life expectancy on birth, i.e., our "best by date".

  • On xtandi for about a year now. My PSA is undetectable and have no issues other than some fatigue. I find going to gym helps with the fatigue. Congrats on 18 yrs. Hope your symptoms get better.

  • I am 3.5 years out on Xtandi and have the same symptoms, except I get diarrhea instead of constipation which keeps me in the house on the toilet for about three hours each morning. I have just discovered a new pain treatment through my Chiropractor. He uses Laser Light treatments. He simply runs the Laser Wand over areas of pain, like lower back, feet, calves and so on. After a few treatments a few days apart the pain disappears. It is like a miracle. The only downside is that it is not covered by insurance. My Guy uses a "K Laser" you can check out their website at that name. I am 18 years our from diagnosis as well.

  • Thanks for the heads up on the lasor light treatments. I will check into it. Anybody else have success with these?

  • Sixteen years since Dx and had 5-year run with Zytiga and Prednisone. Started Xtandi in mid- August too and experienced all same symptoms for 1month. Was ready to cease but restarted Prednisone--Wow, all symptoms gone except fatigue but feel normal.

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