Since starting Xtandi a month ago, I have been adjusting to the medication
and I find it has made me weak and foggy brained, but I also have
a lot of bone pane, my joints hurt all over and my bones feel like they are on fire.
my chest bones hurt a lot, and this concerns me.
you guys have this problem with Xtandi?
thanks
jack
Started a week ago after failing Zytiga and Taxotere.
A lot of the same symptoms here.
I too failed these drugs ..tried jevtana then went back on weekly taxotere and now xofigo ..I also had foundation one check my genes for why I fail these treatments ..
I've been on Xtandi for two years, and it does make me weak and with a brain fog, but I don't have intense bone pain from the Xtandi, my bone metastases give me very intense pain and my doctors put me on morphine for the pain, along with Dilaudid for the breakthrough pain that happens sometimes when the morphine isn't quite enough.
Do you have a lot of bone metastases? And if so, perhaps you need more pain medications, or else the Xtandi might diminish the bone pain in time. My side effects from the Xtandi also included insomnia---I couldn't sleep--loss of appetite, and more.
Some guys get more side effects than others from the Xtandi.
My husband was on Xtandi for almost two years. He experienced most of the SE you describe with the exception of the chest pain. He over the course of time became very weak and lost muscle and weight. His doctor reduced his dosage from 4 to 3 pills a day. That helped a bit. Exercise and small weight lifting was suggested but because of the joint pain that became very difficult. Fatigue and cognition difficulties were also a part of this therapy. The good news is his PSA decreased from over 3 to a low of 0.15. He has been on Xtandi vacation for almost a year now and his PSA has begun to tick up. He has regained some portion of his strength and joint pain has diminished. He has monthly PSA tests, along with quarterly full blood work up to help determine our next move. He did have recent genetic testing which came back negative. Everyone is different and the responses to these drugs are very individual. I hope our experience helps you a bit.
Fatigue was the primary side effect for the eleven months that I was on Xtandi however, I had a side effect that was not mentioned in the literature, nasal congestion. Before I went to bed each night, I would use a nasal spray to help open my nasal passages and I would use a breathe right strip, both helped. After being off Xtandi for about five days, the congestion went away.
I also had a the opposite of one of the side effects which was swelling of the lower legs. I had this prior to taking Xtandi allegedly because of being on Amlodipine for blood pressure reduction. Xtandi interferes with Amlodipine and evidently interferes with the swelling.
After getting off the Xtandi I did feel better with more energy and motivation. Unfortunately, I started chemo about ten days later.
Xtandi evidently did nothing for me and I suspect I may test positive for AR-V7 or one of the other variants that would defeat Xtandi.
Fatigue, brain fog, nausea and loss of appetite have been my issues with Xtandi . I've been on the drug for 8 months. My appetite is back and the nausea is gone. Naps and exercise (walking) helps counteract the fog and fatigue. No bone pain at this point. I have two lesions on my legs which Xtandi helped shrink by 40% according to my bone scans.
My PSA has been undetectable since starting the drug.
Have you had bone scans?
Ex experienced horrible bone pain during his 4 month course of Xtandi. However, his was probably due to progression as his PSA went from 32 to 136 in that time. His pain was somewhat manageable with oxycodone TID and monthly Xgeva treatments, which really helped.
My husband had those side effects as well and I think he also had leg swelling as well as severe stomach pain and diarrhea. The muscle weakness and the chest pain was very scary for him. It can cause a respiratory infection and can cause seizures along with many other issues. He took Zytiga for only a few months before it quit working so when Xtandi made him feel just as poorly he decided it was not working and because of such poor quality of life he chose to stop it within the month. I think that you can tell pretty early on if this stuff is going to help you though. As you can see, many are on this stuff for many months or years and others it never really helps much at all or a couple months at best. If it doesn't appear to be helping, then you will probably know pretty early on and if it does, you have to decide if the side effects are worth continuing the drug.
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