xtandi

Hello liam123  A warm welcome to the Prostate Online Community.  There's no issues, you are most welcome - it's OUR Community and you can use it how you want (there are Community Guidelines!!).

For people who don't know Xtandi is a trade name for Enzalutamide.

I can't help you with the side effects but I am sure someone will be along soon with the answers you need.  You have put a few details about your journey to date on the thread - to help others help you - can I ask you to update your personal profile. To do this go to the home page, click on the chair in the top right hand corner, then "profile" and then "edit". You can then add your diagnosis and a little bit about your journey to date. (You can read mine by clicking on the icon of the beach - you don't need to write a book!).

Best wishes - Brian.

Hello liam123.

A warm welcome to this friendly community that you would have preferred not to be a member of. My husband also has advanced prostate cancer but with distant metastasis. We have been on the rollercoaster of rising PSA'S so can fully understand how you are feeling. He was on Xtandi for 18 months before the cancer was showing resistance to it and have now completed chemotherapy in October - so the opposite way round to you. When he first started on the Xtandi he found that the fatigue increased and he has coped with that by pacing himself and having an afternoon nap. Brain fog built up the longer he was on Xtandi but again he got used to it. Initially he had more bone and muscle aches but this reduced after a little while. It also took a little while to get his gut back into balance and has had no problems since. Hot flushes were rampant until we found that 1 - 2 cups of sage tea a day really worked.

Are there any symptoms you are particularly having problems with and maybe someone can point you in the direction of what worked for them.

Please ask any questions no matter how small or silly you might think them - we have all done it.

Hi Liam 

Sorry to hear your PSA is creeping up.  I have been on Xtandi for nearly 3 years now.  I still get very fatigued, particularly towards end of the working week - I reduced to 4 days as it was having real impact on QOL.  I have also reduced to 3 tablets/day to see if it helped with the fatigue but honestly I don't notice much difference.  As AlwaysHope says you get used to coping with the lack of energy and make changes to lifestyle to suit.  

Other side-effects have really been hot flushes/night sweats but these have become easier over time, although they are worse in hot weather.   

It will get better, hang on in there.  All the best Steve

thankyou for getting back to me  its good to know, the symptoms I'm feeling is similar to others. they started me off on 2 tablets a day. as i was on meds due to an aneurysm op. and was on meds which clashed. however , have completed course of them, and now on 4 xtandi.

the side effects are as you have described. last night was a real struggle.. however will keep going...as i type this my wife is ordering sage capsules  . she doesn't trust me to drink herbal tea ! ce again, thankyou. lets hope things improve and i wish your husband all the best. and Merry Christmas   

thanks Steve...good to know xtandi is still working after 3 years...i will stick with it .happy with the care i have received so far . so, will continue to trust their judgement.  all the vest to yoand Merry Christmas   

think I've set up a profile  ! took me an age to find my way back here 

If it is night time hot flushes you are struggling with try putting a cold hot water bottle under your pillow. Another thing I forgot to say is that he is extremely emotional and bursts into tears at unexpected times- yesterday it was in the middle of the supermarket whilst we were doing the Christmas food shop because he was so happy that we are having another Christmas together. Just go with the flow.

Re sage. I know Millibob swears by the tablets so hopefully they will work for you.

We are definitely going to have a merry Christmas and hope that you and your family have the same.

Liam123,

Cant help with the xtandi side effects, but love your positive attitude.  Hope someone on here can help you.

Best wishes. David

Hi Liam

That's magic, the profile is just what we need.  You have been through the mill but you have support and that's 50% of the battle.

Alwayshope said:

I know Millibob swears by the tablets

Alwayshope is right - Menoforce from Holland & Barrett (other retailers are available) have sorted my flushes out A tad expensive but they work for me,

It's OUR Community and YOU are a member - we are here for you - it's hard but we all have that bond Prostate Cancer and together we can win. Ask anything - nothing is a trivial question.

Best wishes - Brian.

hello, taking on board all the advice i have been given here . i am going to tweek my other meds today. im on strong pain relief for Neuropathy...side effect of the chemotherapy..no complaints but feet hands ain't good ! decided ( i think ) not to take xtandi on Christmas day. as want to enjoy time with the family . merry christnas to you and yours