Xtandi

[Survivor1965]

Question on Xtandi,

I have been on Xtandi/Lupron for 41 months with a great deal of success. However, I have been experiencing tons of back pain for quite a few months. Thought it was recurrence but did CT and bone scan and my regular PSA test and all of that was negative for advancement (PSA less than .1). Been doing physical therapy and even that doesn't seem to help.

The Xtandi website states backpain as a side effect but gives no specifics. Searching the internet there is nothing specific about the backpain related to Xtandi. Does anyone know what specifically this back pain side effect is caused by? Is it muscle, bone, or what? When it says "back pain" as a side effect what are they referring to?

I have a vid conference with my onc next monday and I want to press him on this but need to be better informed.

Many thanks, Johnny

[monte1111]

I see you've been around the block many times. Love the picture. I'm guessing grandchild. Your bone scans are good I think you said. I have a couple bad disks (and a compression fracture that doesn't cause pain). Generic Ultracet really helped. (Tramadol 37.5, acetaminophen 325) Prescribed 3x but just take it 2x daily. Maybe you've tried it already. Really helps with my back issues. I am starting to have diarrhea issues which may be traced back to the Ultracet. Pain or diarrhea. What to do? What to do?

[Survivor1965 in reply to monte1111]

Yes my granddaughter, born on my birthday! Yes my scans show no advancement but there were/are lesions everywhere. I wonder if that Ultracet is a better option than the ibuprofen I’ve been taking?

[Kaliber]

I’ve been on Xtandi for around two years ... Lupron Xtandi Zometa. I have back pain ... sometimes substantial when I try to hold myself in positions I’m not used to being in. I did have mets scattered in every joint in my body so I know that although the cancer is in bio remission that joint damage already exists and is substantial in many places. I believe that pain to be muscular in nature and the shooting but brief pains to be bone. I have Vicodin’s for regular pain and dilaudid for the short lived shooting pains. My “ discomfort “ is so wide spread, especially my lower back - spine region that it would be difficult to imagine life without the meds.

This is supposed to be my QOL period of my life .. concern about using the pain meds seems rather pointless at this time of my life. So to answer part of your Xtandi question I’d say that muscle atrophy is likely the main part of the problem bone pain the rest. You wouldn’t want to mess with much back there , like lots of strenuous exercise, due to the substantial bone loss you are certain to have after 4 years worth of adt. You have to take care you are delicate now.

💪💪💪👍👍

[Survivor1965 in reply to Kaliber]

Hey Kal,

So reading your message I’m wondering if I have some of that damage too. I am going to talk to my onc about some pain relief other than ibuprofen. And I think your answer on muscle atrophy with mixed bone pain is spot on.

One thing, my oncologist’s, I’ve had 2, have always told me exercise is key to longevity. But you have me wondering, especially with the osteoporosis that has developed. Another conversation with my onc on that one. Also, I started this journey in late 2011 so been doing ADT for this entire time. And I wonder what hurts and why lol. I appreciate your reply. You’ve given me some good food for thought.

Have a great day!

J

[Kaliber in reply to Survivor1965]

👍

[larry_dammit]

I’ve been on Xtandi now for 46 months with Lupron/eligard , I have Mets in my backbone so not much help here, but have had moderate pain in the shoulder joints due to the meds. I started Ostiobiflex to help. Works not perfect but not bad. Fighting the monster 🙏🙏🙏

[Survivor1965 in reply to larry_dammit]

Do you have pain from those Mets in your backbone?

[larry_dammit in reply to Survivor1965]

Yes, spine, rib cage and femur. Not bad unless I pickup more than I am supposed to 😀

[monte1111 in reply to larry_dammit]

I pretty much confine myself to lifting 12 ounces at a time. But I do frequent repetitions.

[Survivor1965 in reply to monte1111]

Same here. 1 or 2 a night.

[larry_dammit in reply to monte1111]

Had my first one last night , had been a year. Tasted pretty good. Keep up the faith there warrior 🙏🙏

[podsart]

I have been on Xtandi for 52 months, however most of the time on a sharply reduced dose. I have experienced random pain, ie, shoulder

[Survivor1965]

Wow 52 months. How’s your fatigue?

[EdBar]

I’ve been on Xtandi for 5 years now, I have back pain from a compressed disk or two and perhaps from lesions on my spine where cancer was. I did PT for a while, now I just do those stretches and exercises at home. I try to work on stretching my back as I go through my day.

I’ve been taking Celebrex daily both for aches and pains and for Xtandi related headaches. I had my cardiologist clear me to use it, she said cardiovascular risk is minimal and if it helps with QOL than use it.

Ed

[ChuckBandChar in reply to EdBar]

Hi Ed - Chuck has been taking Aleve twice a day for years now. He’s been on Xtandi for 5.5 years. He has arthritis and bone mets in his spine. I’m wondering if Celebrex would be a better pain reliever. Is it the only pain reliever you are taking?

[EdBar in reply to ChuckBandChar]

Yes, the only pain reliever, I take it twice a day, once in the morning and once in the evening. I usually take it after meals to avoid any stomach issues however I think Celebrex causes less issues than Alleve. Check with your doc, you’ll need a prescription and if Chuck is seeing a cardiologist or someone overseeing his heart health check with them too. My cardiologist said in her 17 years of practice she’s never come across someone having an issue with Celebrex.

Ed

[j-o-h-n]

BPM = Back Pain Matters.............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 07/07/2020 10:32 PM DST

[billymc]

The muscles of the back are weak thin strap muscles. Muscles need testosterone .That's why body builders use them to bulk up . Xtandi reduces your testosterone levels. Hence weak muscles.