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Use of cyproterone acetate

User
Posted 21 Aug 2015 at 19:10

Hello folks, 

Its a while since I was on and my first conversation was to do with cycling. Fortunately, I have found a saddle...called "The Moonsaddle", which has no nose and it has helped me to get back into cycling, which I have been enjoying quite a lot recently!

However, having Advanced Prostate Cancer, I am receiving (long term) treatment with Goserylin implant injections every 12 weeks. Up to recently, this had been the only medication that I took (@ 5 years). However, on my last visit to the Oncologist, I asked if there was anything that could help with the "hot flushes", which had become very frequent and 'very hot!' She prescribed Cyproterone Acetate (50mg) - one per day and I am now into my 5th week of taking these! I am very pleased with the effects on the hot flushes BUT...I am finding that I am really quite breathless and very tired most of the time...hence I need to take a lot of rest limiting my ability to cycle.

I am wondering, if anybody out there can help, please?

1) Are these side effects temporary (the leaflet suggests that these will gradually disappear as I get used to the treatment)?

2) If the implant is supplemented by Cyproterone Acetate...should these be taken all the time? and...

3) Is there anything else I can do as I really wish to remain active?

Thanks for any suggestions you may be able to offer

Best Regards to all

 

Dave Evans

User
Posted 21 Aug 2015 at 21:45
Dave

I am no expert but the additional drug you have been prescribed is an antiandrogen, there are loads of these with different names all doing a similar job. The drug will hellp a ittle with the hot flushes but they can often cause tiredness and more commonly breathlessness.

It is a real balancing act trying to get the right hormone treatments to work and at the same time keep the side effects as minimal as possible. If your Cancer is under good control with just Goserelin (Zoladex) given every 8 -12 weeks the addition of an antiandrogen is not always necessary. You need to decide if the hot flushes are more tolerable and acceptable than the lack of energy.

Maybe the next time you see your medical team you should be very specific about the desire to stay fit and active, cycling or otherwise and see what they suggest.?

Hopefully during or after the weekend people with a lot more experience than me will post for you too.

all the best

xx

Mo

User
Posted 23 Aug 2015 at 08:32

Hi Dave

You have not been forgotten ... I hope to get a reply to you about cyproterone later today!

Alan

User
Posted 23 Aug 2015 at 14:57

Hi Dave

Your profile does not give any details except you have been receiving hormone therapy treatment for 5 years.

You mentioned that to deal with your hot flushes your Oncologist has put you on Cyproterone 50mg per day. NICE produced guidance for dealing with hot flushes in the current guidance issued in January 2014. The guidance is “Prostate cancer: diagnosis and treatment” which is NICE clinical guideline 175. You can see this at the link below:

https://www.nice.org.uk/guidance/cg175/resources/guidance-prostate-cancer-diagnosis-and-treatment-pdf

Have a look at “Hot flushes” on page 25 and you will see that medroxyprogesterone 20mg daily is the first option but if this is not effective or causes problems then cyproterone acetate at 20mg twice a day for 4 weeks may be offered. These options were new in the 2014 guidance.

Your oncologist offered you cyproterone at 50mg a day rather than 20mg twice a day. You have gone beyond the 4 week period in the NICE guidance but you don’t say if Cyproterone is for the short or longer term. It looks as if your Oncologist may have prescribed outside the guidance but, as far as I know, it is not necessarily wrong to do this. Each Oncologist may favour a slightly different regime and this is allowed for, in certain circumstances, in the NICE guidance. You will see from “Your responsibility” on page 47 of the guidance that healthcare professional have some flexibility in using the guidance. All of this is subject to commissioners and providers making sure that the guidance is applied “... in their local context...” I suppose this could mean within budgets and following local clinical policies.

As we know, when it comes to prostate cancer we are all different and we may need different approaches when dealing with the side effects from treatment. My thinking on managing hot flushes is that if Prostap or Zoladex or whatever, is your HT treatment and it is working for you do you really want to add, perhaps unnecessarily, an ongoing daily dose of cyproteone (50mg, 100mg or 150mg) which is also a HT treatment? If your HT is keeping your PSA under control you can always think about holding back on the option of using cyproterone every day; keep this in reserve until it is really needed as a treatment. The alternative is to try using a 50mg cyptoterone tablet less frequently and see if that keeps your hot flushes under control.

I think you should aim for an acceptable improvement from cyproterone but with the minimum doseage necessary - and do this under the guidance of your Oncologist or Clinical Nurse Specialist.

I had hot flushes during my first period of Prostap between November 2000 and July 2001 and after a while my Nurse Practitioner put me on one cyproterone 50 mg per day for about 3 weeks and that stopped the flushes.

During my second period of Prostap for 3 years from August 2004, “Round 2” if you like, I experimented with the frequency of taking cyproterone and I did this with help from my Nurse Practitioner. I began by taking one cyproterone 50mg daily for 7 days then stopped and this gave me 6 - 7 weeks without hot flushes; I then restarted for another 7 days and so on. Another option which I tried, and perhaps a better one for me, was one 50gm tablet once a week or every 10 days which also stopped the hot flushes. With this option you could also try having a break and see what happens - start again if the flushes come back.

After a hormone holiday of over 4 years, and following a rise in my PSA level but without symptoms and with clear Bone and CT scans, “Round 3” on Prostap started in November 2011 and lasted until March 2014. I was not bothered too much with hot flushes during this third period of HT.

This intermittent use of cyproterone may not work for everyone but it is an option and worth discussing with your Oncologist to see if you can try this.

Some men try complementary therapies to help with hot flushes and you may wish to read PCUK’s booklet “Living with hormone therapy: A guide for men with prostate cancer” which provides good information; hot flushes are covered on page 24. Complementary therapies are mentioned on page 27 of the booklet.

One of the complementary therapies which PCUK has been using is whether Aural Reflexology may help men with hot flushes. They have been running sessions for this in certain parts of the county. I understand the courses have helped to reduce hot flushes for many men. If you would like to know more about this and whether there is an opportunity to attend such sessions in your area you should speak to one of the Helpline Nurses in PCUK.

I have to say that these are my personal views on how I mange hot flushes. If you, or any newcomer to the community, would like to try these options you should speak to your Oncologist or Clinical Nurse Specialist.

Everyone is different - I hope cyproterone helps you.

Alan

Edited by member 21 Sep 2015 at 16:26  | Reason: Not specified

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User
Posted 21 Aug 2015 at 21:45
Dave

I am no expert but the additional drug you have been prescribed is an antiandrogen, there are loads of these with different names all doing a similar job. The drug will hellp a ittle with the hot flushes but they can often cause tiredness and more commonly breathlessness.

It is a real balancing act trying to get the right hormone treatments to work and at the same time keep the side effects as minimal as possible. If your Cancer is under good control with just Goserelin (Zoladex) given every 8 -12 weeks the addition of an antiandrogen is not always necessary. You need to decide if the hot flushes are more tolerable and acceptable than the lack of energy.

Maybe the next time you see your medical team you should be very specific about the desire to stay fit and active, cycling or otherwise and see what they suggest.?

Hopefully during or after the weekend people with a lot more experience than me will post for you too.

all the best

xx

Mo

User
Posted 23 Aug 2015 at 08:32

Hi Dave

You have not been forgotten ... I hope to get a reply to you about cyproterone later today!

Alan

User
Posted 23 Aug 2015 at 14:57

Hi Dave

Your profile does not give any details except you have been receiving hormone therapy treatment for 5 years.

You mentioned that to deal with your hot flushes your Oncologist has put you on Cyproterone 50mg per day. NICE produced guidance for dealing with hot flushes in the current guidance issued in January 2014. The guidance is “Prostate cancer: diagnosis and treatment” which is NICE clinical guideline 175. You can see this at the link below:

https://www.nice.org.uk/guidance/cg175/resources/guidance-prostate-cancer-diagnosis-and-treatment-pdf

Have a look at “Hot flushes” on page 25 and you will see that medroxyprogesterone 20mg daily is the first option but if this is not effective or causes problems then cyproterone acetate at 20mg twice a day for 4 weeks may be offered. These options were new in the 2014 guidance.

Your oncologist offered you cyproterone at 50mg a day rather than 20mg twice a day. You have gone beyond the 4 week period in the NICE guidance but you don’t say if Cyproterone is for the short or longer term. It looks as if your Oncologist may have prescribed outside the guidance but, as far as I know, it is not necessarily wrong to do this. Each Oncologist may favour a slightly different regime and this is allowed for, in certain circumstances, in the NICE guidance. You will see from “Your responsibility” on page 47 of the guidance that healthcare professional have some flexibility in using the guidance. All of this is subject to commissioners and providers making sure that the guidance is applied “... in their local context...” I suppose this could mean within budgets and following local clinical policies.

As we know, when it comes to prostate cancer we are all different and we may need different approaches when dealing with the side effects from treatment. My thinking on managing hot flushes is that if Prostap or Zoladex or whatever, is your HT treatment and it is working for you do you really want to add, perhaps unnecessarily, an ongoing daily dose of cyproteone (50mg, 100mg or 150mg) which is also a HT treatment? If your HT is keeping your PSA under control you can always think about holding back on the option of using cyproterone every day; keep this in reserve until it is really needed as a treatment. The alternative is to try using a 50mg cyptoterone tablet less frequently and see if that keeps your hot flushes under control.

I think you should aim for an acceptable improvement from cyproterone but with the minimum doseage necessary - and do this under the guidance of your Oncologist or Clinical Nurse Specialist.

I had hot flushes during my first period of Prostap between November 2000 and July 2001 and after a while my Nurse Practitioner put me on one cyproterone 50 mg per day for about 3 weeks and that stopped the flushes.

During my second period of Prostap for 3 years from August 2004, “Round 2” if you like, I experimented with the frequency of taking cyproterone and I did this with help from my Nurse Practitioner. I began by taking one cyproterone 50mg daily for 7 days then stopped and this gave me 6 - 7 weeks without hot flushes; I then restarted for another 7 days and so on. Another option which I tried, and perhaps a better one for me, was one 50gm tablet once a week or every 10 days which also stopped the hot flushes. With this option you could also try having a break and see what happens - start again if the flushes come back.

After a hormone holiday of over 4 years, and following a rise in my PSA level but without symptoms and with clear Bone and CT scans, “Round 3” on Prostap started in November 2011 and lasted until March 2014. I was not bothered too much with hot flushes during this third period of HT.

This intermittent use of cyproterone may not work for everyone but it is an option and worth discussing with your Oncologist to see if you can try this.

Some men try complementary therapies to help with hot flushes and you may wish to read PCUK’s booklet “Living with hormone therapy: A guide for men with prostate cancer” which provides good information; hot flushes are covered on page 24. Complementary therapies are mentioned on page 27 of the booklet.

One of the complementary therapies which PCUK has been using is whether Aural Reflexology may help men with hot flushes. They have been running sessions for this in certain parts of the county. I understand the courses have helped to reduce hot flushes for many men. If you would like to know more about this and whether there is an opportunity to attend such sessions in your area you should speak to one of the Helpline Nurses in PCUK.

I have to say that these are my personal views on how I mange hot flushes. If you, or any newcomer to the community, would like to try these options you should speak to your Oncologist or Clinical Nurse Specialist.

Everyone is different - I hope cyproterone helps you.

Alan

Edited by member 21 Sep 2015 at 16:26  | Reason: Not specified

 
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