Neck pain ... Can't move head ... Xtandi

[EZgoi]

Since going on Xtandi in September, in addition to other nasty side effects, hubby has a very stiff, painful neck with limited movement. Yesterday he was in so much pain, Norco barely made a dent...pain going up one side into base of head. Finally got a little relief after about 18 hours, but still very painful and cannot turn head at all. Anyone have similar se? Starting to think he cannot take this drug...already on half dosage, but seems chemo would be next and trying to postpone as long as possible. Our MO on vacation this week, next appt next week...considered taking him to Urgent Care yesterday but doing just a little better today...In a quandary about this treatment..had no bad SE on Zytiga until it stopped working...Anyone have similar SE?

[Shooter1]

Had mess off side effects with Xtandi, Pain in major joints and many others. See my other posts. (became complete invalid). How long has he been on 80 mg. Xtandi takes 28 days to reach equalibrium in your blood stream.

[EZgoi in reply to Shooter1]

He has been on half dose for about 2 months .. Has some good days but more not. Just got home from visit with Dr...mo on vacation. Got double strength meds, xray, muscle relaxers, neck brace...we shall see...hopefully get us thru till next week with mo...to make things worse he is supposed to have knee replacement in Feb...when it rains it pours!!

[AlanMeyer]

I've never taken Xtandi but I have occasionally had neck pain that hurts any time I move my head. It's probably happened to me a half dozen or more times in my life. In my case I'm pretty sure it has been caused by muscle strains. Xtandi might have had a different effect, or maybe it caused a muscle strain, or maybe it's a strain but it just coincidentally occurred with the Xtandi.

There are several non-prescription things that have helped me. One is heat, from a heating pad. Another is careful massage of the neck muscles - careful not to twist anything. And the third is ibuprofen.

I just checked for drug interactions at drugs.com. See: drugs.com/interactions-chec...

It looks like Xtandi can reduce the effectiveness of ibuprofen but it didn't say anything about ibuprofen interfering with Xtandi - though who knows.

Anyway, what helped me was to take 3 ibuprofen (600 mg) to start. That gives a good feeling of pain relief to me. Then I take 2 pills every 6 hours or so. It helps all along and by about the third day of this I have substantial relief and at 4 or 5 days the problem is mostly resolved - though I still am careful when turning my head for a while.

I wouldn't expect your doctor to know whether this is a good plan or not. There are thousands of drugs and no doctor is aware of all of the interactions between them. However you might try calling Pfizer's Xtandi support line (1-855-898-2634) and asking them about it. See: xtandi.com/contact-us

Best of luck.

Alan

[elainea53]

My husband has eligard injection every 3 months.

Had mri on neck no cancer there. His neck hurts when he turns it. Don’t know if from Eli. His psa is 0.01 so staying on it.

[GTWaites]

The only advice I can offer is to insist on regular imaging tests. My husband was taking Xtandi and the bi-weekly lab tests were coming back great but then he suddenly became paralyzed and we found that the tumor on his spine was actually growing. We discontinued the Xtandi and my husband left us in August - 8 months after he discontinued the medication. He had already tried 2 rounds of chemo. One was successful until it ended and then the cancer came right back and the other wasn't successful at all. Xtandi was his last chance other than clinical trials but once he became paralyzed we finally gave up. Having said that, overall, the treatments kept him alive for 13 years after diagnosis so we were grateful for that. Every persons reaction to treatments is different so my husbands response would likely be different than yours but please fight for your rights - get imaging tests. Doctors most certainly do NOT always know best.

[j-o-h-n in reply to GTWaites]

My condolences to you and your family. May he rest in Peace at the side of our Maker.

j-o-h-n Tuesday 01/01/2019 2:25 PM EST

[monte1111 in reply to GTWaites]

So very sorry. Been there. Wife left 4 and a half years ago. After only 4 months I'm sure you are still in a fog. Hope you have family and friends to help you through these rough times. Friends, family, pets are a real help. Not trying to be a cheerleader. Take your memories with you on your new path. Wishing you the best.

[CalBear74]

Speak to the oncologist about taking Soma (carisprodol) to alleviate the stiff neck. I have gone through the drugs.com database for an interaction with Xtandi. Soma interacts with hundreds of drugs but Xtandi is not listed at Drugs.com as having an intereaction. I used Soma off and on for years when I had athletic injuries from Tae-Kwon-do. Never had any problem with it.

[Hidden]

That neck pain is brutal.. hope he finds solution very soon..

[monte1111]

Hard to sort out the side effects from the side effects. Fought with a stiff neck years ago and all it took was a new pillow and relaxation at bedtime. Maybe a muscle relaxer? Something to relieve the stress? Wishing you the best.

[rococo in reply to monte1111]

Do you know the name of the pillow. So hard to find a good one. Thanks. Rocco

[monte1111 in reply to rococo]

It wasn't a "special" pillow. What I noticed was that just my head was on pillow and neck was actually causing an arch during the night. Out with the stiff pillow and in with softer and king size pillow. Get head and neck on pillow. And yes I have 2 pillows. 68 years and still have a teddy bear. Hated the cheap pillows in the cheap motels we used to go to so much I used to bring mine from home.

[Sxrxrnr]

For years as a younger man and as an incessant tennis player and as a train commuter to my employment in SF I would get a painful neck sprain from tennis or dozing off on the train and having my head flop about.

Somewhere along the way I learned that if several times a week I would do a very simple exercise that completely ceased these very painful several episodes of neck pain.

This exercise consisted of turning my head back and forth with my chin touching either shoulder In succession.

I have always attributed this success merely to the stretching and strengthening of involved tendons, ligaments, and muscles of neck and upper shoulders.

Many friends particularly tennis friends, who I have told of this exercise have reported this has helped them immensely.

The shower is a great place to do this. Perhaps daily with your chin touching each shoulder 15 times.

Your results may vary.

By the way, I have been on Xtandi monotherapy plus 24 weeks of Taxotere for 15 months, have had no neck pain. Only therapy that I have had since diagnosed 13 years ago.