Just diagnosed yesterday

We have two teenage children who are aware their Dad has cancer but do not yet know it’s incurable. A friend whose husband recently passed away with cancer asked her similar aged children what they did/didn’t do right or wrong. Although they were open with them they didn’t tell them the what-ifs. The kids said they would’ve wanted to know what the outcomes might be because it may have changed some of the decisions they made. One said she may not have been so selfish in her choices. We are just about to tell ours based on this advice. I don’t know the extent of your daughters autism or if this would apply but even speaking to someone from an autism group who has had a similar experience might help?

Just an update

My daughter has been told, distraught at the news initially but I have tried to be as normal as possible just to leave it in the background and carry on life as normal as much for myself as the family. I have even brought myself the truck I always wanted.

I have had my first hormone injection and start on enzalutamide mid October, no mention yet of chemotherapy just worried that is only because of Covid but will ask at my next appointment.

I am still experiencing some lower back pain but hoped this would ease, otherwise I have been in good health and reasonable spirits with no obvious side effects to the treatment.

Then today I received a letter from Urology outlining my case so far and for the first time I saw my Gleason score was 5+4=9.

I broke my own golden rule and googled it and I am now back to stage one of dread and fear for the future, I only went for a routine blood test and in a month I am down to this.

Every time I get some optimism someone from the medical dept smacks me in the face again.

Is there any hope at all?

Then a few days later a letter drops through the door with details on you have never discussed or understand the implications. They are good at giving the facts but hope is something that is needed.

Sorry for my ignorance but abiraterone / enzalutimide whats the difference?

These are both newer generation hormone therapy drugs, and extremely expensive. In the UK, they tend to be used later in treatment, after your first hormone therapy has stopped working and after chemo has been used. Indeed, the NICE rules in England say you can't have it until after you've tried chemo. There's been a trial running for a long time which shows they are very effective when used from the beginning of hormone treatment, and at least as good as chemo (which has also more recently been moved nearer the beginning of treatment), but have far fewer serious side effects. Such use is now common in some other countries too, but due to the high cost, has not been approved for such use in England, *EXCEPT* during COVID-19, because chemo would make a COVID-19 infection much more serious. Once you are on it, you will stay on it for as long as it's beneficial for you, even after COVID-19.

The two drugs have much the same effect (although Abiraterone also requires you to be on a low dose steroid to make up for a reduction in natural steroids available from your adrenal glands). However, they work completely differently.

Enzalutamide is what's known as an anti-androgen, so it blocks androgen receptors and stops them using any small amount of testosterone which is still floating around. (Androgen is a collective name for all male sex hormones, of which testosterone is the best known, but there are lots of them.) Enzalutamide works like the long standing bicalutamide (hence they're both -lutamides), but is 8 times more powerful binding to the androgen receptors, and so 8 times more effective in keeping testosterone out. There are two more newer drugs in this family, apalutamide and darolutamide, which are going through licensing and approvals processes (there are some people in England on apalutamide now).

Abiraterone is known as an androgen synthesis inhibitor, i.e. something that stops androgens being made from something else. Prostate cells don't actually use testosterone directly, they convert it into another androgen first, dihydrotestoterone (DHT) which is 5-20 times more powerful than testosterone. When there's no testosterone around, a mutation which the cancer cells will eventually discover is that they can instead convert adrenal steroids into DHT, which enables the cancer cells to start growing again. Abiraterone prevents this conversion of adrenal steroids into DHT. It is also an anti-androgen, but that's not the main property it's used for.

If you're more interested in this, I do give an occasional talk on how the different hormone therapy drugs work.

Hi Sorry that you find yourself here along with the rest of us but there is good news out there .I had a robotic prostectomy back in February unfortunately the cancer had spread and is in three local lymph nodes ,the bone scan was clear .Gleason 4- 3 with tiertary 5 (a few cells were found to be grade 5) My PSA was 17 after the op but rose to baseline 28.6 in the two months after prior to my starting HT .My consultant says I'm curable and because of COVID prescribed Enzalutimide for three years as first line hormone therapy and a course of RT which will start in the New Year.I started on Enzalutimide in June 2020 ,4 weeks later my PSA was 0.02,. eight weeks after starting it dropped to 0.01 basically undetectable which means the cancer had been put to sleep and possibly some cells have died off .Unfortunately due to the nature of prostate cancer it is likely that at some time in the future Enzalutimide will not work as well for me but in the meantime it's a great relief to know the treatment works.
It is a very expensive drug over £100 a day .It has some bad side affects hot flashes ,sweats ,headaches, aches in muscles insomnia BUT it is a wonderful drug and many studies only just published are proving it's worth so it's side affects are bearable if it helps keep the cancer from progressing .There have been reports of remission whilst patients have been on Enzalutimide bone Mets have gone and lymph nodes no longer show evidence of cancer obviously not everyone has such good results but it's a great drug .Covid has thus been a blessing in disguise for me. I wish you well ,many new treatments are in the pipeline and there is much to be hopeful about .

Edited by member 21 Oct 2020 at 18:03  | Reason: Not specified

My diagnosis was very similar to yours and I was 61 as well. The good news is my PSA was 852 but went all the way down to 0.5 after some months on the hormone treatment. A year on after 6 bouts of chemo as well I am back at work 3 days a week building up to full time. So chin up and fight the cancer. It will win but hopefully not for many years!

Finally a little good news to post on this journey.

Blood test three weeks ago showed my PSA down to 13 from 82

Now two weeks into my first month on enzalutamide another blood test and a call from Oncology revealed that my PSA is down to 3 and my calcium score down from almost 900 to 300 with virtually zero side effects so far.

Oncologist delighted with the results so I have to agree with him, if he is happy that makes me happy.

Early days I know but anything positive is a move in the right direction, I still feel as though I am walking on a frozen pond, each new step that doesn't go through the ice is a fantastic relief but there is still another step to take.

Great response Phil.

Hi all

Just an update as promised

Call this morning from Oncology Pharmacist, PSA down to 1.4 and Bone markers within normal levels with all other bloods normal. Next test now moved out o eight weeks from the two that has been the norm.

All good news on that front but I must admit with Christmas, New Year, daughters 14th Birthday all with a week and the announcement from my son of a new grandchild due in June, its all become a little overwhelming.

I have with the help of my wonderful wife managed to stay positive so far but when you get these markers in life although you can say "ok lets aim for the next one" It was difficult with so many all together, once the "I wonder if I will see another thought" came into my head I was stuck with it and the depression that came with it.

Covid doesn't  help, with my wife booking some dates for caravan hols with her usual bubbling optimism both about the virus and my condition whilst I was hitting a low only made the issue worse before my brave front cracked and I was reduced to tears, only to get a rebuke for not telling her how I was feeling, even though she had noticed my mood and was trying to cheer me up without saying anything openly. 

At least now with the appointments moving to 8 weeks I can try and put it back in the box in my head without the constant reminders and needles. I have been advised about counseling but feel its not for me, I need to be able to block it out so the less I have to see or speak to anyone the better, being on here is enough and gives me support when I need it so far.   

Oh Happy New Year and lots of them to everyone on here