prostate cancer.

Hi Mike3561,

I'm sorry that I can't answer your question as I wasn't on Relugolix, but this reply will bounce it back to the top of the forum & hopefully someone will be along shortly who can help.

Best Wishes

Brian

Hi Mike ,

I have been on relugolix with Darolutamide for around 6 months , my main issues is weight gain around my middle and fatigue, I have been trying to lose some but it’s difficult for me , GP won’t give me Weight lost jabs so I’m still trying . Fatigue I can cope with , overall I feel it’s manageable and the results are marvellous , my PSA is 0.01 so it’s well worth having Mike .

Best Wishes

Tony

Him Tony.

good of you to reply to my question. can i ask you what your gleason score was?

and has yours spread anywhere  else?   i'm on just the one medication.

but seems other patients  are on one or more besides relugolix.

regards 

mike...

Hi I'm on relugolix  been on it for nearly two months, I would say hot flushes  are my problem, weather here does not help cut out the hot drinks to I love a cuppa but I've cut right down.

My Gleason was 7 (4+3) so not the most aggressive, however I have had 2 recurrences, still here , still fighting into 6 years , If and when these drugs stop working there are still plenty of options so i in a fairly good place , I do dip on occasions like most of us however I could wake up in the morning feeling a little better , 

I hope you get all the support you need and stay well .

BW

Tony

Hi Mike,

sorry you have had to join this forum.  You will find it very useful reading over time.

my husband started relugolix tablets nearly three months ago. He starts radiotherapy in two weeks.

we dont know if he is a lucky or not, but he has had no side effects at all apart from the odd mild hot flush, lasting a couple of minutes. 
he goes about his normal life as usual.  He is 71 (72 half way through his radiotherapy)

i do realise everybody is different in how they react to medication, but i hope you cope as well as my husband.

good luck and let us know how you get on.

Hi Cabb.

thank you for your reply.  

i just started  relugolix today,  as far as i know i'm only on this drug. 

no mention of radiotherapy or anything else to date.

my gleason score being 4+5=9  still not seen my oncologist  for definite results of my pet scan.

 best wihes to you and your husband, hope all goes well

mike...

Hi Cfc

what would you say about the amount of hot  flushes    you get?  do you get them daily, hourly?  wondering what  to expect.

how about fatigue?

Any time bed time is the worst but was in customer house the other day repairing her tv  and within seconds I was having one, as for fatigue  I walk 4k nearly every evening to get fit i got gleason score 4 plus 3, been put on relugolix for a couple off months then go back for more test im having brachytherapy then  20 dosage of high beam radiation, scare stiff tbh, i sometimes i wonder if walking is worth it,but I want to be fit as I can ,it's hard what we ear alot about side effects ,but we got to be strong

Hello Mike (mike3561 ) 

Everyone reacts differently to their medication and you can have two people with an identical diagnosis from two different NHS Trusts on totally different medication.

Whilst I know you worry about what's in the future - try and relax, try and keep fit and take each day as it comes.

To help us to help you without you repeating things can you please add your diagnosis and journey to date to your profile - To do this on your home page click on the computer screen top right, then profile and then edit. Once you have written something remember to save it. You can read a members profile by clicking on their user name or avatar.

Best wishes - Brian.