Long Road, and no legs to walk -

[Trouble19]

My husband has been fighting this battle for 13 years. He had surgery in 2006, followed by radiation.

PSA didn't go down and started on hormone shots.

Following scans it was determined that the cancer had moved on to the bones. Next stop was chemo.

Following chemo he moved on to Zytiga. Mixed in there was Provegen, and Radium. Throughout this total journey, it wasn't the greatest but his quality of life wasn't too bad.

Then came Xtandi - (4) pills and after a month he developed horrific headaches, shortness of breath and weak legs. The Dr. had him stop for a week, then lowered the dosage. The symptoms stopped.

After a month the symptoms came back and we're much worse. He stopped the meds, but he still has great difficulty walking. When you're a basketball official that's the end of your career. The oncologist can't explain this turn and said it's not from Xtandi.

All I know is my husband can not walk, even though two months ago he could. Today he's scheduled for a brain scan.

Had anyone else experienced the same provlem? Is this a reversible problem with physical therapy. Is there any hope he will be able to walk? By the way he's 68. Thank you for patience and help.

[Magnus1964]

Has his doctor mentioned Casodex to replace xtandi? It's an older ADT drug. It might help and improve his quality of life. He has been through a lot, more than I have in a shorter amount of time.

I really feel for him. All my prayers.

[Magnus1964]

By the way keep up his vitamin D3 level. I take 1000 i.u. daily. There have been recent studies showing that higher levels of vitamin D3 decrease the aggressiveness of Pca.

[Tjc1]

Xtandi messed with my right leg bad. If i walked for awhile then tried to go up stairs i had to crawl. Finally cut the dose in half/ taken at night and i can tolerate the side effects

[mediocra]

My dad has what sounds like very similar leg weakness, although he is not on Xtandi. He has been on Lupron and Casodex and received 6 rounds of docetaxel. He is < 1 year from diagnosis. After being one or more of the treatments, he developed pretty quickly worsening leg weakness. He now has extreme difficulty rising from a seated position and uses a rolling walker for stability.

It does not appear to be due to the cancer itself (PSA started at > 2200 and is now < 0.1 with no findings on MRI or bone scan that would explain his weakness). I now think it may be from the ADT (I've seen similar postings on this forum).

My suggestion would be to make sure he has had imaging to rule out some sort of nerve compression and make sure he is not on any other potentially-offending medications (e.g. statin).

[CantChoose]

I assume he's had an MRI to look for cord compression?

[Trouble19 in reply to CantChoose]

No, but that's are next stop.

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Very sorry to hear of his experiences........those of us who have been diagnosed and have had prostate removal, know the cancer comes back. I have had two reoccurances. Trying to capture each day!