Abiraterone NHS: Good evening everyone... - Advanced Prostate...

Advanced Prostate Cancer

22,371 members28,137 posts

Abiraterone NHS

Hillwalker87 profile image
27 Replies

Good evening everyone. Does anybody know if the NHS offer abiraterone as a first line treatment along with Zoladex? Also, I hear that doing this can be beneficial. Does anybody know how so? Why would it be any better than adding it later on as a second tier? Many thanks in advance!

Written by
Hillwalker87 profile image
Hillwalker87
To view profiles and participate in discussions please or .
Read more about...
27 Replies
AlanMeyer profile image
AlanMeyer

Two large and well constructed clinical trials (STAMPEDE and LATITUDE) have examined this question and concluded that abiraterone acetate (AA) + androgen deprivation therapy (ADT, e.g., Zoladex) works better than ADT alone. It is my understanding that the two taken together while the cancer is still hormone sensitive provide longer survival than ADT followed by AA after ADT has failed. If I remember correctly, the benefit is greater for men with higher Gleason scores and more advanced/widespread cancer, but I'm not sure about the details of that.

Here's an article about the trials: ncbi.nlm.nih.gov/pmc/articl...

Tall_Allen has written blog posts about this but I didn't find them just now. I just remember that he examined the literature pretty thoroughly. He may be able to chime in here with more info.

I don't know the NHS policy,

Good luck.

Alan

Hillwalker87 profile image
Hillwalker87 in reply toAlanMeyer

Hi Alan, that's good to know, many thanks for taking the time to explain that to me!

Tall_Allen profile image
Tall_Allen

Unfortunately, NICE continues to reject approval abiraterone for this purpose:

pharmatimes.com/news/nice_s...

It is ironic because much of the research supporting such use was done in the UK.

Of the 4 drugs (along with ADT) that are FDA-approved for newly diagnosed, metastatic PC (docetaxel, abiraterone, enzalutamide, and apalutamide), you can only get docetaxel through NHS. This discusses options available in the US and elsewhere:

prostatecancer.news/2017/06...

Docetaxel+ADT is as good as any, but some men are unable to tolerate it due to comorbidities, and should have other options, imho.

Hillwalker87 profile image
Hillwalker87 in reply toTall_Allen

Many thanks for the info! That is ironic, there's nothing like dangling that carrot eh?

jastf profile image
jastf in reply toHillwalker87

Approved in Scotland

scottishmedicines.org.uk/me...

Cost analysis of interest especially.

Hillwalker87 profile image
Hillwalker87 in reply tojastf

Is it possible for someone in England to get on the health system in Scotland do you know?

jastf profile image
jastf in reply toHillwalker87

Probably yes... as a UK resident. Ask your GP?

But I can just imagine serious hoops to go through to get abiraterone.

Did you read as far as the cost analysis?

Hillwalker87 profile image
Hillwalker87 in reply toTall_Allen

Would you say that ADT and Docetaxel would be something for my father to mull over and perhaps ask his oncologist then? He's always been put off with chemo but may be open to it if the benefits can be amplified in any way

Tall_Allen profile image
Tall_Allen in reply toHillwalker87

Chemo has a bad reputation because patients hear about experience of different kinds of chemo for other cancers, and because, sadly, some patients wait until it is too late to use it. At that point it has much less survival benefit and side effects are much worse. Used earlier, the survival benefit is substantial and side effects are much reduced. Maybe show him the section in that article about docetaxel.

Hillwalker87 profile image
Hillwalker87 in reply toTall_Allen

I will do, many thanks again for that, plenty of food for thought

in reply toHillwalker87

Here's a short video about early docetaxel chemotherapy with ADT. It was made in the UK and based on the STAMPEDE trial.

vimeo.com/149626704

I did 6 cycles of Docetaxel chemotherapy along with ADT when I was first diagnosed. I like that it kills a wider spectrum of cancer cells, not just the hormone sensitive cancer. You are also done with it fairly quickly in 18 weeks.

The side effects are quite tolerable for most as they were for me. It's a good treatment that unfortunately, too many are afraid of.

Hillwalker87 profile image
Hillwalker87 in reply to

Thanks for sharing your experience, much appreciated! It will certainly help towards him making a decision

in reply toHillwalker87

It's interesting because just after I had started chemotherapy, the early use of Abiraterone was approved. It was too late for me, but even if I had the option I would still have chosen the chemotherapy. Chemotherapy is better done earlier. By the way, I am now on Abiraterone successfully for 2 years. I do think having done early chemotherapy is helping my treatments now.

Hillwalker87 profile image
Hillwalker87 in reply to

That's good to know. My dad wants to keep working, do you think with chemo this is a possibility?

in reply toHillwalker87

It depends on his work. Anything strenuous physically will be very difficult during the week after infusion. Weeks 2 and 3 are pretty much normal. If he is doing desk work, he might be able to handle the entire cycle or maybe just not work for the first 3 days after infusion. Some people get their infusions on Thursday and work Friday, get through days 3 and 4 over the weekend and back to work on Monday. But it really depends on how strenuous the work is. I was able to do light chores around the house during the first week, but I did spend a lot of time in my chair. I would compare it to having a bad cold for a few days.

Hillwalker87 profile image
Hillwalker87 in reply to

He's an engineer haha! Though what you say about timing it before the weekend could be a goer for him should he decide to. He goes to work however he's feeling anways so wouldnt be surprised if he gave it a bash.

in reply toHillwalker87

It's really worth doing.

For me, I wanted to know that I did everything I could do and did not go against the recommendations of my doctor. The studies show a gain in overall survival and I did not want be thinking later about what I "could have done", especially if things didn't go well. I would do it again without a second thought if it could help me.

Hillwalker87 profile image
Hillwalker87 in reply to

I'll pass on your thoughts to my dad, sounds like it's well worth a thought!

Lika-g profile image
Lika-g in reply to

Did you start taking abiraterone immediately after chemotherapy? Or did you wait for the PSA to increase?

in reply toLika-g

I waited. I had 3 different doctors who all said to do that. None of them would prescribe it. Later on a 4th doctor told me the same thing. .

AlanMeyer profile image
AlanMeyer in reply toHillwalker87

I think the reason the NHS approves ADT + chemo but not ADT + AA is the cost. The results of both combination therapies are about equal but chemo is less expensive - in spite of the fact that it requires skilled labor for each of multiple treatments while AA is just a bottle of pills that patients can take on their own. It's hard for me to blame the NHS for this decision given that, with our commercial drug system (in the U.S. anyway) the retail price for the drug is over $9,000 per month. However generic versions of the drugs are being introduced in the US and UK, with tooth and nail resistance from the patent holders.

If I were in the UK, I'd probably try the chemo and stick with it if it seemed tolerable to me. If the side effects are severe, I'd appeal to switch to AA. AA is not side effect free though.

As I understand it, the side effects of chemo are, to some degree, able to be mitigated if the attending oncologist cares enough to try to do it. Some oncologists don't seem to bother (they're not the ones throwing up, losing hair, or suffering neuropathy.) Mitigation can include: cold application to hands, feet, skull, and tongue; nausea medication; and adjustment of dosage (for example smaller doses given more often to get the same total dose but with less intense effects from each application.) The use of cold can slow the flow of blood in the chilled area, which reduces dosage to parts of the body that are very sensitive to chemo side effects but not likely to have PCa metastases.

Hope that helps.

Alan

Hillwalker87 profile image
Hillwalker87 in reply toAlanMeyer

Hi Alan, that is very helpful yes, thank you very much. It looks to me as though it could be worth a look at

CalBear74 profile image
CalBear74 in reply toAlanMeyer

Alan, Zytiga is available in a generic Yonsa in the U.S., as you know. Costco has a coupon for $350. I believe India is an option and I have seen posted on Healthunlocked an address for a source in India. Also, there is online instructions for reducing pill dosages 75% if you take a low fat meal with the pill.

timotur profile image
timotur

You really need to investigate if your pathology matches the profile of the studies, which were weighted with higher Gleason and advances stages. The downside of early abiraterone is it may be linked to treatment-emergent small-cell PCa.

Hillwalker87 profile image
Hillwalker87 in reply totimotur

That's good to know, thank you very much!

Dondodoc profile image
Dondodoc

When I was diagnosed December 2017 Abiraterone was certainly not NHS first line treatment due to cost some £3000 per month. It was avaiable however after chemo. I was fortunate to have private insurance and AA was approved with prenisolone in hand with ADT Prostap . The latter was regarded as the “gold standard” if there is such a thing. A neighbour has recently had chemo 6 three weekly sessions and was debilitating for the first week after each session but after was tolerable. AA and prostap withADT has side effects of weakness tiredness and the like which seems to vary greatly from person to person other than for which AA is fine and still seems to be working. Keep fighting the demon good luck.

Hillwalker87 profile image
Hillwalker87 in reply toDondodoc

That's great feedback, thank you very much

Not what you're looking for?

You may also like...

Abiraterone self pay

Does anybody have a source to buy Abiraterone? We currently buy the Glenmark brand from India at a...
taylor123 profile image

Zytiga (abiraterone acetate)

Does anybody get their Zytiga (abiraterone acetate) from India? My Aetna prescription plan was...
lincolnj8 profile image

Abiraterone 500mg Daily

Hi guys, Due to the high expense of Abiraterone we are looking at my Father taking 500mg a day...
taylor123 profile image

Mood Changes on Abiraterone/Prednisone?

Has anybody experienced mood changes on Abiraterone/Prednisone? Specifically, have you ever felt a...
tom67inMA profile image

Prednisone on Abiraterone withdrawal?

Hi. Does anyone one know how long to continue with Prednisone (5mg) after stopping Abiraterone. I...
Proflac profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.