Has anyone been on Enzalutamide for 5 years or longer and still have undetectable PSA Levels?

There are already new ways of dealing with prostate cancer such as stopping hormone therapy if men like your husband reach undetectable levels in a short period of time and maintain it for say 18 months. The HT is then restarted when the PSA begins to move upwards - this work seems to improve the total time before progression. There is another trial I have been keeping an eye on which is called Bipolar Androgen Therapy which is at Phase III stage whereby shots of testosterone seem to help when the cancer starts to become resistant to hormone therapy. The way forward seems to be in more targeted therapies but also getting the body's own immune system primed to fight the cancer. There seems to be more emphasis now on how to maintain Quality of Life which is more subjective but also on what we can do ourselves to improve how we deal with side effects with exercise, diet and mindfulness. I hope you have woken up without the wobble today but carry on waffling as it is good to air your fears rather than bottling them up.

Sending you big hugs.

Gosh, I didn't know about either of these trials, how comforting to know that there really are large steps being taken in the fight!

Yes, wobble-free this morning  Having you lovely people responding with such helpful answers really helps and I really appreciate it. 

We have 6 inches of snow here so tramping through that with the dog has blown away the cobwebs.

Sending a big hug back

X

Hi I've been on hormone injections and enzalutamide tablets for over 3 and a half years, psa 0.007 still undetectable in fact I'm down to 3 tablets a day. When I collected my tablets from the specialist nurse I asked him how long will they stop working  he said the gentleman who was in before me  has been on them for 8 years. 

Goodness, that is fantastic news for you and the gentleman!!

Thank you SO much, this gives us all much to be hopeful for.

Hello ,I have been on Enzalutimide for 5 years this June, my PSA dropped to undetectable within 4 weeks of starting it and the ADT hormone injection in June 2020 it has remained undetectable ever since .

I had a robotic prostectomy in 2020 and my PSA never dropped below 17 so because of Covid Nice agreed Enzalutimide could be prescribed as a first line treatment for hormone sensitive Prostate Cancer.

I had 6 weeks of RT in January /Feb of 2021 as part of the treatment and now only take two Enzalutimide tablets a day my PSA remains undetectable all bloods are normal and i have a yearly bone and CT scan as everyone on Enzalutimide  should do due to the fact that Enzalutimide can mask a change in the cancer which doesnt produce PSA .However this is not common and a scan of bones and soft tissue is a good way of making sure everything is still fine .

I am considered locally advanced Gleason 4.3.tiertery 5  .Stage T3b .I also had non invasive superficial bladder cancer diagnosed at the same time which i am now cured of and have been passed back to my GP no more yearly checks.

All in all I feel well and although there are side effects its nothing I cant manage .

Gosh you have been through the wars and it's fantastic to hear the you continue to feel well.

Fantastic that you have also beaten another type of cancer as well!!

It is so heartening to hear such success stories from others in the same boat.  OH gets bloods taken on Tuesday,  with a phone call the following Tuesday to get the results and we are praying the PSA remains undetectable. 

Thank you so much for sharing your story, it helps immensely. 

Take care and thank you x

I understand only too well how nerve wracking it is waiting for that blood test result .My wife hated waiting for the telephone call she would be shaking like a leaf .We found a better way of getting the results by accessing my records through the NHS app  I have my blood tested at the hospital  phlebotomy test centre every three months in anticipation of the phone call the next day the resilts are available online in the afternoon a couple of hours later and we can access them quite easily so we know in advance and it stops the horrible not knowing  until the phone call.Everyone is able to look at their test records its just got to be set up for you .through the app .Good luck there is a lot of light at the end of the tunnel we have found ourselves in lotsn of good new treatments in the pipeline .

Hi ScorpIo6 , thanks for your post, but I just wanted to add that not all areas are fully connected to the NHS App.  I can’t get oncology or pathlab results as those departments don’t yet link in my own health authority.  David

Well you should be able to soon its not a  trial  its been rolled out since 2019 and is called Patients Know Best  check with your GP they should be able to advise you when it will.be available in your NHS trust .

Hi David, we are in exactly the same situation and it’s so frustrating!

There has also been some debate about whether bad results should be delivered on the app or should be delivered face to face.

my husband had a scan result on his app a couple of weeks ago. It was in such complex terminology that it might have been written in Chinese! I managed to google to find some vague understanding but, nevertheless we had to fill in an online GP consultation form to ask for clarification. The result was that a GP had been assigned to review the result in 3 weeks time! Fortunately, somehow an in house pharmacist got hold of the report, realised my husband needed medication, prescribed it and telephoned my husband the next day!  

Digital has its benefits…….and its drawbacks!