I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Should my OH start Enzalutamide?

Email this conversation Print this conversation

User

Posted 14 Jul 2020 at 23:54

My OH was diagnosed with advanced prostate cancer in July 2019 with mets in his bladder, sacrum, hip, pelvic and aortic lymph nodes. PSA 75
He was immediately given HT and began chemo with docetaxel in Oct 2019 for six cycles finishing in Feb 2020
He then began a four week radiotherapy treatment focused on the bladder in June 2020

End of March 2020 he began to complain of increasing back and hip pain and by the end of June the pain was not responding to oromorph and all other painkillers.
July 2020 his PSA rose to 2.9 after being at 0.5 since November 2019.
Onco requested a bone scan and this has shown significant activity in his sacrum and hip.
Advised to start Enzalutamide, awaiting bloods to see latest PSA and T level

Thanks for taking the time to read and love to all those suffering and to the OH’s impacted by this disease xx

User

Posted 15 Jul 2020 at 17:18

Hi SunnyJane,

So sorry to hear the news of your OH’s recent bone scan results. I have no personal knowledge of Enzalutamide but have read about good results from many members on this forum. Fingers crossed that your OH will respond positively too.

Love to you both.

Ange xx

User

Posted 20 Jul 2020 at 14:50

Hello Sunny-Jane

I hope I can give you some hope with the enzalutamide.

When I was diagnosed in Dec 2014 with a psa of 199 (rising to 235 by the time medication started) I was put on a trial with enzalutamide plus Prostap.

Well I'm still here after 5 years 7 months with my psa running at around .06.

I watch my diet pretty strictly (as instructed by my wife) and do try to keep as fit as possible.

Sure I've had some side effects but they are hanleable.

I really hope your OH has years of success with this drug.

All the very best

Paul

Show Most Thanked Posts

User

Posted 15 Jul 2020 at 10:10

Sorry to read there is increased met activity. Hope the pain is brought under control quickly. Would they consider a short focused blast of radiotherapy to the bone mets?

Ido4

User

Posted 15 Jul 2020 at 14:50

Hi Ido4

He has been given a one off radiotherapy treatment to the sacrum area to help with pain, this was only done a couple of days ago so probs too early to know if it has helped

Had a really helpful chat with the Cancer Nurse Specialist at the hospital today, she has reassured us about next steps and future treatments. I think sometimes they are better at explaining stuff

We will now await the arrival of the Enzalutamide tablets and hope he reacts positively to these 😊

Love and best wishes to everyone

SunnyJane ❤️🙏❤️ Xx

User

Posted 15 Jul 2020 at 17:18

Hi SunnyJane,

Love to you both.

Ange xx

User

Posted 15 Jul 2020 at 20:41

Thank you for your kind words Ange, they are much appreciated.

My husband is feeling more positive now and we remain optimistic for the future xx

User

Posted 15 Jul 2020 at 22:20

Hi SunnyJane

My husband was on Enzalutamide for almost a year. To begin with it did reduce his PSA and no real side effects. Gradually his PSA increased again and once the scans showed increased bone mets he was taken off it BUT 12 months with good quality of life it was worth it. My husband is now on trials which may be offered if Enzalutamide stops working. Lots of people have managed a lot longer before it stops working.

All the best

User

Posted 17 Jul 2020 at 20:50

Originally Posted by: Online Community Member

Hi SunnyJane

My husband was on Enzalutamide for almost a year. To begin with it did reduce his PSA and no real side effects. Gradually his PSA increased again and once the scans showed increased bone mets he was taken off it BUT 12 months with good quality of life it was worth it. My husband is now on trials which may be offered if Enzalutamide stops working. Lots of people have managed a lot longer before it stops working.

All the best

Thank you that’s good to hear. It’s so difficult to plan as I have very quickly learnt that every man reacts to treatment differently. We are hoping this next treatment will last at least a year but more if we are lucky but that’s what we had hoped for the chemo!
Still keeping positive and we understand there are still more treatments that can be used as the cancer finds a way to beat the Enzalutamide.
Wishing you and your husband all the best xx

User

Posted 17 Jul 2020 at 22:21

Hi SunnyJane

My husband also had early Chemo and we were told it should last 2 years before any further treatment needed (other than HT every 3 months). PSA was 1.1 at end of Chemo, down from 1303 at diagnosis but in next 5 weeks increased to 2.2 and continued doubling at about that rate. He has been very well minimal pain and often walking 4 or 5 miles a day. The hospital told him to continue this (with care) even during lockdown. He had a trial at the beginning of this year which didn't help and had just signed up to another at the beginning of lockdown which got pulled, then another trial was offered in May which he is now on. PSA all over the place but the medics say they will wait for the scans in a couple of weeks and see if this trial continues. We live fairly close to the Royal Marsden so very easy to get to. Even if this trial doesn't work for him it may help others. There may be other trials he can try and there is still another type of Chemo that would be possible. If Enzalutamide doesn't work out do ask if there are any suitable trials.

Best wishes and do feel free to ask any questions.

User

Posted 17 Jul 2020 at 22:22

Keep the positivity going SunnyJane. Thinking of you both.

Ange xx

User

Posted 17 Jul 2020 at 23:57

Originally Posted by: Online Community Member

Hi SunnyJane
My husband also had early Chemo and we were told it should last 2 years before any further treatment needed (other than HT every 3 months). PSA was 1.1 at end of Chemo, down from 1303 at diagnosis but in next 5 weeks increased to 2.2 and continued doubling at about that rate. He has been very well minimal pain and often walking 4 or 5 miles a day. The hospital told him to continue this (with care) even during lockdown. He had a trial at the beginning of this year which didn't help and had just signed up to another at the beginning of lockdown which got pulled, then another trial was offered in May which he is now on. PSA all over the place but the medics say they will wait for the scans in a couple of weeks and see if this trial continues. We live fairly close to the Royal Marsden so very easy to get to. Even if this trial doesn't work for him it may help others. There may be other trials he can try and there is still another type of Chemo that would be possible. If Enzalutamide doesn't work out do ask if there are any suitable trials.

Best wishes and do feel free to ask any questions.

Thank you that is all really helpful and very interesting to read. My husbands PSA went down to 0.4 during chemo, then a month after finishing was 0.9. He then started radiotherapy 3 months after chemo and by the end of four weeks treatment his PSA was up to 2.3 and that’s when the bone pain became intolerable.

He volunteered for the ATLANTA trial but sadly was selected in the control arm. He is very happy to be involved in trials as he feels he would very much like to help others in the future.

We don’t know what his future holds but we have faith in the consultants and they have excellent at involving us with options and decisions all the way. We now hope that the Enzalutamide will have a good impact and hold the cancer for some time to come.

Once again thanks for your reply, it really helps talking to others going through it all.
SunnyJane xx

User

Posted 20 Jul 2020 at 14:50

Hello Sunny-Jane

I hope I can give you some hope with the enzalutamide.

When I was diagnosed in Dec 2014 with a psa of 199 (rising to 235 by the time medication started) I was put on a trial with enzalutamide plus Prostap.

Well I'm still here after 5 years 7 months with my psa running at around .06.

I watch my diet pretty strictly (as instructed by my wife) and do try to keep as fit as possible.

Sure I've had some side effects but they are hanleable.

I really hope your OH has years of success with this drug.

All the very best

Paul

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.