Looking for feedback from others who have experienced increased back pain while taking Xtandi.
My dad recently finished BAT at Hopkins and Dr Antonarakis recommended trying Xtandi again which did not work very long the first time he was on it. He is also on extended release Oxy and dexamethasone. My Dad also reported tonight that he is having significant jaw pain. We are going to contact the doctor and let him know the pain is getting significantly worse. He started off with three pills about a month ago and has increased to four in the past week. Any advice or feedback you can give while taking Xtandi would be greatly appreciated.
The next step for him would probably be going on Jevtana which is just about the only thing other than clinical trials that he has not been on.
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Amandaslp78
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Hi, I'm new to both this forum and the prostate cancer beast. I'm responding because I also take Xtandi, extended release Oxycontin and prednisone.
I was prescribed full dose , 160mg/ day of Xtandi to start and had extreme back and jaw pain, as well as many other issues. After a brief time off of 1 week, the Dr restarted me at 1/2 dose , 80mg/day.
Though I still have significant lower back and pelvic pain, in the morning, most other symptoms have been reduced and I'm able to tolerate the medication.
I have mets to the bones and lymph and do not weigh very much, the Xtandi appears to be working so far with much less side effects. (Still have heavy fatigue, some night sweats and pain in the morning upon awakening)
Of course only your Oncologist would be able to determine if a lower dose would be effective for your Dad, as we are all individuals as are the DNA of those little monster cells.
I wish you and your Dad the best with the Xtandi, it's a good medicine, took a couple of months of tweaking before we got it right.
Good morning, thank you so much for your reply. We did get a response back from my dad’s oncologist and he recommended cutting the dose in half. They are going to do an MRI next week of his spine and determine what we need to do from there. Either we stay on Xtandi or move to Jevtana. My father also has extensive bone Mets. I wish you all the best!
Best of luck with the scans. I wanted you/ your Dad to know I also have monthly injections of Lupron which are not without side effects but appear to be working with the Xtandi alongside. . When diagnosed last September my PSA was >2400.
Entering my 5th month of treatment now stands at 0.061.
I also had a single infusion of Zometa which I refused to take again at this time.
I've also needed to add a 2nd pain med.
Pain significantly reduced as the treatments have moved forward.
Hoping the same for your Dad.
I saw somewhere on here, "we're now all members of a club none of us asked to join!"
Good evening, thank you for the well wishes! Our family truly appreciates them.
We are looking forward to getting some answers with the scans on Monday.
This is actually the second time my dad has been on Xtandi. He also does the monthly Lupron injections. This time around there has been a small decrease in the PSA but he just had to go down to two pills, so we shall see. He does have a lot of bone pain. Are your alkaline phosphate’s under control as well?
I am so happy to hear you’re having good results. Best wishes to you as well.
My alkaline phosphate’s are improving, they were way out of wack 3 months ago (high) but are now moving towards the normal range.
I'm so new to this and I'm not sure which medicine helped with this, maybe the Zometa?
The Lupron may take a bit to kick in, as long as his PSA is dropping that's a good thing, not matter how small to start. The Xtandi is a whole other beast. 2 pills may work as well as 4? I'm at 2 now, started at 4. Totally up to our oncologists to decide if a particular dosage may be effective.
* Duration may be just as important as dosage. According to one of the pages on the Xtandi website, 28 days is "Steady State" where the concentration of the medicine in our body on day 28 is 8.3 x's greater than a single daily dose. (steady state, the amount excreted by our bodies = the amount taken in)
Like training for a marathon my goal was to reach 28 days without any major interruption. After two months of trying I finally reached that goal at the end of last month!
*These are just my observations, sounds like your Dad's Oncologists are spot on so far, I would stick with what they are prescribing.
--> There are so many other more experienced folks on here, many beating back the beast for 5 years or more!
I'm hoping someone jumps in to share their experiences and suggestions.
Best of luck on Monday. God Bless you, your Dad and your family.
My husband is on Xtandi. He had terrible back and rib pains when he started but after 2 weeks it subsided. He is taking full dose. His Psa has been rising these last two months so don't know if it has stopped working.
Thank you so much for your reply! I’m sorry to hear your husband’s PSA is rising on the Xtandi. My dad hasn’t had much luck with it either. God bless you and your husband.
I was diagnosed with PCa because of the extreme lower back pain that I was experiencing. I could barely walk, it was that painful.
I was also put on a full dose of Xtandi and still struggled with pain in the lower back and the side effects. Can't recall jaw pain though. Went back to Oncologist and said this is not working. Strangely, he didn't recommend a lower dose and instead put me on Zytiga. That didn't go too well and stopped working after a short while and the back pain was still there. I received some Oxy and was hospitalized for the back pain at one stage. The dose of Oxy was too high I think and I almost had an accident while driving so I stopped that.
I'm now on Jevtana and the pain is gone and the side effects are manageable. I'm not sure how long the MO will keep me on it but my pain only seems to vanish while I'm on some sort of Chemo. I don't know what my options will be after Jevtana but I'll cross that bridge when I get there...
Thank you so much for taking the time to reply. I am sorry for my delay, with all the craziness going on right now I have all of my kids home with me and trying to homeschool during the day. My dad‘s pain ended up getting so bad on Friday we took him to the hospital. They ended up finding a fracture on his spine as well as a piece of bone from his jaw that had broken off causing a massive abscess. They are not sure if that is a side effect from the Xtandi. They are waiting to see if it is just dead bone or there is infection in the bone. That is going to determine what happens next. He is finally starting to feel better and hopefully can come home tomorrow. Please keep me posted on how the jevtana is working out for you. That is our next option once my dad gets strong enough.
I don’t know how to say what it has does for me, but cannabis has saved my life. I could go on and on and on..but enough said. Feel free to ask me anything!?!?!
I am so glad you have found something that works for you. My dad has not tried it but I plan to talk to him about it to see if he is open to it. Thank you for your reply! God bless you!
I have been on Xtandi and Lupron for 3 solid years. I too have back pain. Gradually getting worse, like my muscles are locking up but it could be bone pain too, who knows?? I have been doing physical therapy for 2 months for this pain. Thought it was helping but now don’t think so. I went down to 3 pills. Really sucks. Not enough that I’m totally winded all the time and no endurance but the various pains are making it very challenging.
Been on Xtandi now since finishing chemo 38 months ago, I take two Celebrex tabs daaaileyyfor old back injury and the met I have on my spine, had to switch to Mscotin and Dilaudid to be able to take the Xtandi. oxicdin and fentanyl ont mix well with Xtandi, Good luck with the monster 🙏🙏🙏🙏
Tell me more about the fentanyl patch? That is what they put on my dad at the hospital today. They are trying to get his pain under control as he has a fracture at L3 and L4 that there is nothing they can do about. They said it just has to heal on its own.
I have Mets in my spine, rib cage and femer. When I was doing chemo I couldn’t stand the side affects of OxyContin and such. Made me sick, the doctor put me on Fentanyl patches, they worked great for me, no side effects and nothing hurt. Unfortunately it interferes with Xtandi so had to stop them and go to morphine based pain relievers
Daryl here has linked a number of posts related to pain.
Starting in 2018 I had 6mos of extreme pain from bone mets to entire skeleton, 1300+ PSA, AP wayyy out of range. Up to 12+ Norco a day no real help. Finally Lupron kicked in and I added CBD in 2019 and able to cut Norco back to 2 a day and pain not gone now but manageable. Mets down by about 2/3 in recent scan, weight loss 55lb reversed, strength returning, slowly since end of 2018, mid 2019. PSA had gone down to 1.2 and now on a slow increase again to 5.5. AP is in low normal range.
MY current back pain may be due to old injury or to mets?
Latest CT and Body Scan show good improvement, prostate and lymph nodes reduced in size, for now at least.
IN MY CASE time on Lupron, diet, exercise, alkaline therapy CBD, etc., seems to be helping ME.
I was on Xtandi for 2.5 years with intermittent Lupron. Hot flashes and fatigue were my worst issues. Minor lower back pains. Been fighting this for 14 years and still going strong. Bone Mets in clavicles ribs spine and hips. Provenge immunotherapy seemed to help quite a bit.
Thank you so much for your message! I’m not sure my dad is a candidate for Provenge. I’m so glad to hear you are doing well. My dad was diagnosed a couple years ago with a PSA over 200 and extensive Mets.
He’s down to two Xtandi right now until he gets strong enough to determine if he can go on Jevtana. Honestly, his PSA is all over the place. He just finished BAT therapy at Hopkins and that made it jump through the roof over 1000. It is slowly climbing back down right now.
I can only speak for myself but when I switched it xtandi from zytiga, I noticed way more back pain. I had let my gym membership go a few months before. I started working out again and today my back pain is virtually gone. The xtandi isn’t working, my psa is climbing, but my back is good!
I must urge you if you have access to your Hopkin’s physician, or a nurse helpline through your insurance plan, or as a public service from an area hospital, to call them and have a symptom assessment of your father. The low back pain is compatible with a heart attack but quite common with prostate cancer patients. Your profile gets more troubling when you bring up the subject of “significant jaw pain”. This symptom worries me more than the low back pain. Full disclosure: I spent more than 10 years in the medical triage industry. I am not a physician but have a PhD.The triage guideline for heart attack symptoms was our most popular for physician evaluation whenever we talked to a medical staff group about acquiring our triage guidelines to support their proposed nurse helpline.End of the full disclosure. I hope this encourages you to talk to a helpline or to his physician immediately. Good luck.
Thank you, we did get him to Hopkins on Friday and he had a fracture on his spine as well as a piece of bone from his jaw that had broken off that had caused a massive abscess. He is still there and we are hopeful he will come home tomorrow depending on the results of the bone biopsy from the jaw. Thank you for your message, I appreciate it so much!
I am so glad you have found something that works for you. My dad has not tried it but I plan to talk to him about it to see if he is open to it. Thank you for your reply! God bless you!
Tell me more about the fentanyl patch? That is what they put on my dad at the hospital today. They are trying to get his pain under control as he has a fracture at L3 and L4 that there is nothing they can do about. They said it just has to heal on its own.
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