Hi everyone! I have begun year two of treatment. Abiraterone, prednisone, Lupron, radiation. My PSA levels remain low and steady. However, for the last few weeks I have felt weaker than normal, slightly nauseated, and a little unsteady when walking. Pretty much all day long.
Does anyone know if this is "normal?" Will this pass or is this what my days will continue to feel like?
Hi SandyBear2023
I have been on xtandi since June last year and lupron since 2016. For the last month or so I feel slightly unstable on my feel also, I have the tendency to lean forward, so I’m careful when walking. My fatigue level went up when I started xtandi, so working out two to three times a week helps greatly. I don’t know if the stably will last but will ask my urologist next month. Good luck.
You're still using a urologist even while on advanced hormonal treatment? No medical oncologist?
I have a medical oncologist at MUSC. I get my lupron injections and xtandi from my uro. Medical oncologist is 100 miles away, uro 15 miles away. I have video appointments with the medical oncologist. He is keeping up with my psa also.
Our treatments are similar, main difference is orgovyx instead of Lupron. I'm a year and 2 months in. I recently mentioned the instability issue to my MO. He suggested adding yoga to the exercise routine. After yoga-ing for about a month, I can say that it does help with strength, balance, and flexibility. There are many youtu.be "masters" out there. I settled on manflowyoga.
Due to SEs my husband's Xtandi was cut to 1/day a few mos. ago while continuing w/Lupron. PSA started dblg. and MO talked him into 2/day 2 mos. ago. Yesterday shortly b4 noon he said he didn't feel right and something was wrong. He had trouble standing, was unbalanced and felt his legs couldn't support him. Restless leg syndrome also was very bad and that's why he kept trying to stand. He took a baclofen and it gave him a little relief. He was also very tired. Our BR is upstairs and he insisted he wanted to sleep there but had great difficulty w/the stairs, losing his balance several times. Put in call & portal message to MO but didn't hear back...nurse called and said take to ER but talk her they couldn't do anything for him and it was similar to what Xtandi caused a few mos. ago that got his dose stopped for a while. I sent a message again this a.m. and will call in a few mins. He's up and says he feels slightly better but still "wobbly." RLS is not a problem so far today. No Xtandi last night and as far as I'm concerned, he's off for good. I understand your concerns and share them. The "cure" is sometimes worse than the disease.
Nobody can answer that question because everyone reacts differently. Erleada + Lupron and yeh, I feel demotivated and slightly nauseous regularly. One thing that helps is Provigil; ask your oncologist about it. It helps with energy and focus.
In my case I think greasy or rich foods make it worse.
Last night at a friend's house I started feeling nauseous but went outside into the 60 degree night air and felt immediately better; his house was kind of stuffy.
For me it's been like that. Some days are better than others.
Another suggestion, keep yourself occupied as much as possible. I think the fatigue is worse for me when I run out of things to do.
I’m on Lupron at 3 months and Zytiga with prednisone. It really sucks! Everyday is different. I suffer from fatigue, unsteadiness, dizziness, neuropathy in my legs and feet, hot flashes, cold flashes, mental fog, depression, anxiety, poor sleep, bad headaches nearly every morning, zero interest in sex, other than that, life is good!
I forgot to mention my blood pressure shot dangerously high last week because of an EXTREMELY bad headache in the night that sent me to the ER. Anyone else have that issue?
Sounds like the shits, but only because it is. I have many of the same SE's. Previously it was the fatigue and the almost constant chills that were the worse, but now ADT is really impacting my mental health. I do the exercise (mental and physical), but the SE's are getting worse the longer I'm on Lueprolide. Several folks on this forum (all smarter and more knowledgeable that I) have recommended E2 patches to help counter the SE's. I'm going to be pressing my docs for that med for sure.
I'll update the forum when I have tried the patches for a few weeks.
I have joined a ballerina class for my many twirls a day.... you should see me in a Tutu...
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 03/26/2023 12:00 AM DST
hey man … a tutu ? You wish. You need a sixsix.
😂😂😂
After 21 months of feeling good, fatigue now?
Not feeling great
Tired of education and self advocacy 
PSA slightly up after salvage radiation
Getting thick and tired
