Enzalutamide

Hi

sorry how things are going, I’m on enzalutamide which is keeping the PSA down, I’ve had chemotherapy and radiotherapy on prostap along with enzalutamide, has any trials been offered ? What we’re his scores apart from stage 4, there is another treatment radium 223 comes to mind.

Stay safe

Joe

I have had prostrate cancer which had gone messatasic before being diagnosed. My sacrum and surrounding area are infected. Cancer has been suppressed but not my oncologist wants to give me some chemo. Also I have been  diagnosed with Paraneoplastic syndrome and I am currently visiting the Neurologist in Liverpool. I find it hard to believe I have cancer as I look extremely healthy, believe me I have challenged the diagnoses and visited a private oncologist who confirms the original, Urologist and Oncologist diagnosis. Has anyone come across Paraneoplastic appears to be rare. I believe that the Enzalutamide usually lasts for 14 months to 2years  I am now nearly 2 years

Thanks

Enzalutamide is a wonder drug but it is time limited. With me it dropped my PSA from 500 to .22 and definitely regressed the spread of cancer. It worked for 9 months but it effectively gave ne another year before progressing to chemo. I think its success is sometimes over stated on this forum. It works and has lots of benefits but you're not alone if the benefits are quite short term.       

Hi Joe

Thanks for your reply , no trials and it seems like he is going to end of life care as the transfusion over the weekend didn’t have a great effect.

so I don’t think they are doing any more 

hope it goes well for you 

A

Hi thanks for your your reply , I hope things remain steady for you , my Dad had lymphoma first so this has played havoc with the prostate drugs , and they haven’t really worked .

Moving to end of life care , it’s been just over 2 years since that original diagnosis 

Thanks for your response, yes I had high hopes and now everything has changed really quickly and no more treatment/ end of life

are you also under the royal Sussex In Brighton?

we were not offered any trials 

Hi, I'm under Worthing. My only thought is, is it really end of life care? There is one trial that I was offered for the Olaparib drug. It only works for people with a specific gene characteristic which I didn't have. I think immunotherapy and other chemo drugs may also be available so it's certainly worth pushing for answers.    

He passed away yesterday

I got told no trials were suitable and obviously by now he was very sick due to his lymphoma as well , it all took over .

all the best x

Hi

That is so sad, my condolences, words are never enough. I know you knew it was coming, I truly hope you have family or friends to comfort you.

May he rest in peace now it’s a sad day.

stay safe 

take care

Joe

Thanks Joe, still in shock, all happened so quickly in the end , at least no more pain but due to not accepting it  the home care was last minute and all was unsettling and not really in place  , I did however manage to see him and say goodbye minutes before he passed and he looked peaceful 

thanks for your kind words x