Vomiting after taking xtandi

[sem275]

Hi, dad was sick after taking his xtandi at the weekend. Has been ok since. Just wondered if anyone else had experienced this? He is in quite a bit of pain just now, was muscular but now has some hip pain and a lot of muscle stiffness making it hard to move. Not been a great few days, hopefully we can get on top of the different pains.

[Drcrunch]

Never take 0n empty stomach.

[COG1]

Hey, Sem,

My husband is in clinical trial where he may or may not be taking Xtandi (double blind). He was told he could take his meds on a full or empty stomach, but has found that if he takes them before eating, he get sick.....every time. I would suggest taking the Xtandi only on a full stomach.

Donna.

[sem275 in reply to COG1]

Thanks Donna, I will pass that on, he must have taken them before he had his food rather than after. Good luck with the trial

[curious-mind1]

Hey Sem,

My dad had similar symptoms after starting xtandi. His however, got worse over time (the next 4-6 weeks): almost total loss of appetite, continued vomiting after food, wild oscillations in his blood pressure. Oncologist said that for a small percentage of people on Xtandi, the drug wreaks havoc and can be potentially dangerous to their brain. The syndrome is called posterior reversible encephalopathy syndrome (PRES) and it affects 0.4% of those on the drug.

I'm only saying this as something to watch out for, if his symptoms while on Xtandi worsen. If that's the case, you might want to ask his oncologist about PRES.

In my dad's case, the solution was easy: he was switched immediately to Zytiga and the symptoms went away.

Arthur

[sem275 in reply to curious-mind1]

Thanks Arthur that's useful to know, sorry your dad had to go through that, we will keep an eye out. Take care

[Grumpyswife]

My husband takes his half dose at 9 pm with no food. We thought he might have had PRES but the neurologist said his brain scan did not show that. He is able to stomach the half dose but has occasional diarrhea and very weak muscles, loss of appetite and weight loss.

[sem275]

Thanks for sharing your experience mjbach. Between the muscle weakness, fatigue and pain there is something different every day it seems. Hoping if dad switches to taking them at night something will ease up. He's just checking with his doctor first. Hope your husband is doing well today, sorry to hear he is going through this. Take care

[DakotaDon]

I've been taking Xtandi for over 3 years (started w 4 per day and now at 3 per day) and have never experienced any sickness from it. Perhaps I'm just lucky. I do notice fatigue, muscle loss and weight gain, however, but then, I'm 82 and would expect some of those symptoms. I take mine in the evening before supper.

Good Luck,

Dakota Don

[sem275 in reply to DakotaDon]

Thanks Dakota Dan, this xtandi seems to be taking its toll at the moment. Take care

[larry_dammit]

Sorry to hear, I’ve been on Xtandi now for 26 months. Get a upset stomach every day. , I take it at the evening meal. I found out if I snack at least 30 minutes before the pills it helps, also to eat after I have taken them helps as well. Good luck with this monster. 🙏🙏🙏

[sem275 in reply to larry_dammit]

Thanks Larry, sorry to hear it doesn’t agree with your tummy, but thanks for sharing, we can try different ways of taking it to see if it helps. Seems to be wiping him out just now. Take care

[joeguy]

I have been on Xtandi for going on 4 months now. After about a month at 4 pills, I had to drop down to 3 pills because of a constant headache. I seem to be tolerating 3 pills ok so far. I take about 1 hr after breakfast everyday and have had no trouble with upset stomach

[sem275 in reply to joeguy]

Thanks joe guy, that’s useful to know, hope it continues to go well for you, take care

[joeguy in reply to sem275]

The thing I didn't mention is fatigue and brain fog can be pretty bad with Xtandi, but its not too different from what one experiences with most all ADT drugs, and Im sure your dad has already discovered this.

[sem275 in reply to joeguy]

Yeah my dad has a bit of brain fog but could hardly move yesterday from pain/fatigue/muscle stiffness. Also lost appetite but doctor has been in and seems to be getting on top of the appetite and pain better now. Didn’t struggle so much with side effects from chemo or injections but the xtandi seems to be a different kettle of fish for him. Thanks for sharing and take care

[Wflaggs]

Never experienced anything like this in the 5 years I’ve taken Xtandi.

[joeguy in reply to Wflaggs]

wow, 5 years? That's encouraging to hear someone that's been on it so long. I was told I would be lucky to get 2 years out of it (4 months so far). Has your PSA stayed really low the whole time you have been on Xtandi?

[monte1111 in reply to joeguy]

I was about to say Wow 5 years also. It appears Wflaggs takes xtandi in morning. I and most others, I believe, take in evening. 18 months now. 0.2 last 7 months. That's good enough for me and Bobby McGee.

[joeguy in reply to monte1111]

I also take mine in the morning after I have some breakfast....most on here seem to like taking it in the evening before bed.

[Wflaggs in reply to joeguy]

Non-detectable almost from the start. Fatigue and few instances of memory fog really only side effects. Feel so lucky.

[joeguy in reply to Wflaggs]

That's great, hope I can have a similar experience with it. Are you talking eligard or firmagon injections with the xtandi?

[Wflaggs in reply to joeguy]

Was taking Lupron, then had orchiectomy

[joeguy in reply to Wflaggs]

Has your doc ever suggested giving you a break from the drugs since you have been undetectable for so long?

[Wflaggs in reply to joeguy]

No, and I don’t want to stop a good thing. My wallet would like that but the risk is too great in my opinion. Btw, my oncologist is a top onc at Sloan Kettering

[joeguy in reply to Wflaggs]

Was curious because I'm undetectable after 4 months and wondered if they might offer me a break from the eligard and xtandi at some point. But you are probably right that it's not worth the risk. Although I'm told prolonged use of ADT drugs really increases the chances of heart attack

[Wflaggs in reply to joeguy]

I had asked my dr how long I would be on Lupron and he said forever so after a little research I got an orchiectomy.

[joeguy in reply to Wflaggs]

I've been on eligard (lupron) or firmagon for over 2 years and am now castrate resistant...... been thinking about taking to doc about just having them removed...... they are useless at this point anyway

[Wflaggs in reply to joeguy]

Same thought process. And less side effects

[Shooter1]

Total invalid from Xtandi 4 mo after chemo ended. Cut to 3 pills and better withing 3 days. Cut to 100 mg and started to get better all over. Cut to 90mg and I could wiggle my toes again and climb stairs without using walls. Now at 86 mg average dose (2 pill all week 3 on Sunday) and I can carry 2 cups of coffee up stairs to bedroom in morning and not use walls. Plenty of left over periferal neuropothy from my battle to remission.

Life goes on. Spent all last week at National Black powder competition. Managed to bring home 5 certificates of first and second place. Not bad for the new weak tired normal.. .

[sem275 in reply to Shooter1]

Congrats on your certificates Shooter1 and glad that things have improved for you since dropping your dose. Think this is something dad can ask about if he is still struggling at his next appointment, thanks for sharing, it is really helpful to prepare questions for doc, take care