Abiraterone

Thanks Brian x

Hi Johnam,

My thinking is that there's going to be side effects with all drugs and you need to be matched with the drug that's going to be best for you, but none of them are perfect. Our consultant loves this drug, he thinks this is one of the best things you can take because it's highly effective with minimal side effects and a drug that you can hopefully take for years. Abiraterone has only just come into play in England and Wales on the NHS. It has been available in Scotland for sometime because they clearly believed this was a drug worth paying 2.5 k for a months supply to give the men of Scotland a fair chance. It has been available privately for a long time and it has been the ADT drug of choice for many private practices. There's a lot of men from England and Wales that have wanted this drug, but sadly it has not been available to them because of the price. it's taken a long time to be approved for use in England and Wales NHS. I think October 22 it went generic (thankfully) it now costs roughly (£60) a month, it's slow to filter through but it's getting there. 

If your husband has pre conditions with his heart, Enzalutamide would be better for him because of the side effects, ( I believe?) His consultant would know this.  if he is fit and healthy it shouldn't be a problem. Another side effect can be liver problems. so your husband will be monitored with a liver function test as well as the three monthly blood test.  Any problems will be found here. It's used in two ways, originally it was used as a late drug, after Chemo or for men that couldn't have Chemo, also a final push to give a few more months for men in a late stage, but they found if it was given early (Stampede trial) as a hard hitting first line drug at the very beginning ( like the triple therapy+HT ,Chemo)  it had the ability to knock the cancer right back and smother it. So given with something like RT as a combo.- RT would kill off the bulk of the cells and Abiraterone would smother and suppress any other activity with the rest- in theory. Another useful fact is that after a while of HT, some cells can (weirdly)start to manufacture their own false testosterone that will feed cancer cells and help them to grow, This is one of the only drugs that wont let this happen out of the 4 ADT drugs commonly used.

Common side effect- it can make your potassium levels drop ( found on the blood test) so a banana a day will bring that back up. This isn't just used on older men, Mr BW is 58 later this year and he's been taking it just over a year and a half since he was 56. I wanted this drug from the get go, we had a private consult at the Royal Marsden and this is what was suggested as the way to go with RT, I was determined to get this drug whatever it took and as luck would have it, it went generic around the same time as diagnosis.

I would say research it, give it a chance to do its thing and see how you get on with it, if it doesn't suit you can change to something else. Your husbands treatment will be a process of finding what works for him. Your Nurse sounds like she knows what she's talking about, if you are having NHS treatment in England or Wales and you are offered Abiraterone I feel like putting the flags out, because I have been banging on about this drug for at least a year and questioning why men are not offered it now it's generic.

I hope you and your husband get on well at your appointment, ask lots of questions.

Best wishes Lorraine .

Morning L,

Brilliant post! I do not think any oncologist could put it better. Honestly, the only good think about this PC is this community and the fact that my husband is softer now.

Lots of love

Dafna

Good Morning Lorraine

Great post thank you - you must be sleeping better now as it wasn't posted in the middle of the night - only midnight!! .

Thank you for your continued support.

Kind Regards - Briasn.

Hi Millibob

I can get loads done in the night, it's so quiet! 

Lx

Hi Sorry to hear about your OH Diagnosis.

I am on Degralix injection every 4weeks also l signed

up to take Arbiraterone 1000mg every morning and to take a steroid an hour later.

I got diagnosed with advanced prostate cancer last May Psa 3761. My psa is now 1.2.

I have had absolutely no side effects from Arbiraterone no high blood pressure nothing.

Wow Lorraine , I ended up in bed  really early last but wish I had seen this first. You have actually explained it in depth and I feel reassured by your post . All the stuff I was reading made it sound bleak.
we live in Scotland so I presume this is a standard drug given by the oncologist when diagnosed to hit it hard . Thank you so much , I’m sitting bubbling as OH out his walk . 

best wishes to you both too 

Liz xxx

Thank you for the encouragement Armie xx

Hi Armie .

I have just read your post to Johnam and I noticed that your journey just before mine last year.

I can see that your PSA was higher than mine "1000+"

By the looks of things you are also on HT like myself but with a different plan.

Your PSA has also dropped to similar numbers as mine "0.9" at last appointment April/May 2024.

I'm due to have my next PSA blood test on Friday and I will see my consultant next Monday so fingers crossed the numbers will be similar???

I was just wondering how things are with you currently???

Prostate Worrier.

Hi Prostate Warrior.

Yeah I’m doing ok thanks.

I’m trying to do as much as possible before I got the world stopping diagnosis.

I have done weight training for a long time now. 
So I thought no I’m going to keep doing training as much as possible.

PSa has been dropping at each blood test

Stable around 1.3 now 1.2

It had reached the bone mostly ribs pelvis right femur and lymph nodes.

Im having a good quality of life this past year so im very grateful to my consultant.

i hope your blood test on Friday continues to improve and you are doing well.

Arnie