Arbireterone and/or chemo

I have read a lot about abiraterone (zytiga) in the last few days. Does anyone know if this is now widely available to men in the UK (if the Drs believe it might be helpful) and if so does it tend to be given before or after chemo. I have also read about the trial which concluded that early chemo could be better so confused now re the order things are done in.

(My husband has been diagnosed with an initial PSA of other 6000. I am very scared that they will say nothing they can do but at same time trying to be hopeful that something will be able to control it)

Thank you very much for the replies to my original post.

23 Replies

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  • Here's a link to Prostate Cancer UK:

    prostatecanceruk.org/prosta...

    -Patrick

    "Who can have abiraterone?

    Before chemotherapy

    Abiraterone is suitable for men with advanced prostate cancer that has stopped responding to other types of hormone therapy, but who haven't yet had chemotherapy.

    If you live in England, Wales, Scotland or Northern Ireland, you should be able to have abiraterone before chemotherapy.

    After chemotherapy

    Abiraterone is also suitable for men whose cancer has stopped responding to other types of hormone therapy and chemotherapy, such as docetaxel. Abiraterone is available for these men on the NHS.

    But if you’ve already had enzalutamide as well as chemotherapy, abiraterone is not widely available.

    In England, you won’t be able to have abiraterone if you’ve already had enzalutamide – unless you had to stop taking enzalutamide within three months because of severe side effects or because your cancer continued to grow.

    In Wales, you won’t be able to have abiraterone if you've already had enzalutamide.

    In Scotland and Northern Ireland, if you've already had enzalutamide, you should speak to your doctor about whether abiraterone is available for you.

    Ask your doctor or nurse whether abiraterone is suitable for you. You can also speak to our Specialist Nurses."

  • I can't speak to policies in the U.K., but my path was Zytiga, then Xtandi prior to chemo. Until last year Xtandi was not approved in the US after chemo, but it is now available prior to chemo.

  • Thanks for your informed reply to Sallyy.

    My husband has just been put in Xtandi as there are now spots on his lungs and one on his liver. He has Avanced PCa and was diagnosed in 2013 and has been on Decapeptly til now. Also has bilateral nephrostomies because prostate blocking bladder, so things are quite interesting.

    I am getting all the info I can so that we can ask Oncologist the right questions. Chemo not recommended at moment as kidneys not 100%.

    Jackie

  • I am not going to mention the drugs and progression of PCa, I have incurable metastatic PCa.

    Jackie, I am going to say your calmness and love shine through in your message and that will be a bigger help to your husband than any drug. My best wishes to you both and I am sure everyone on this excellent forum agrees with me. David

  • Thankyou, Mikes PCa is also a watch and treat with drugs as he was diagnosed late and it had got away. Been on Hormones up til now. He is in hospital as a tube had come out of a kidney but has been replaced some on we go.

    Take care and I hope your drug regime helps fight this tiger of a disease for a long time.

    Jackie

  • Jackie that was a quick reply! Thanks for your wishes. Your husband's progression like mine. No symptoms until Nov 2014 and diagnosis metastatic on Jan 12 2015. I remember dates well, especially my daughter'sThey said I had disease for at least 2 years before symptoms. That's life! I remember dates especially my daughter's birthday. She jokes that I will never forget it now. Nor my sister's birthday, May 10. My 10th and final chemo. Good luck...and your husband's first name? Helps to be personal.

  • Hi David, my husbands name is Mike, he was diagnosed just a few days after his 70th birthday in 2013 which was 2 days before Christmas. He had gone into hospital with retention and that was the beginning of our journey into the world of PCa. His cancer had got away into pelvis and top of his femur. Put on Decapeptyl hormone injections up til now. The last scan has shown spots on the lungs and a 5cm one on the liver so Xyandi has now been added. We have 2 sons so Mike keeps telling them to keep vigailant with any changes. We are in Bristol UK and under the BHOC which has an excellent team of Oncos.

    Take care and keep well, Jackie

  • I would say there is much that can be done - what might work is the unknown. With some early success, you could manage this disease for a while.

    I am not a doc and cannot give you medical advice BUT in the US I suspect early chemo would be preferred over abiraterone. Abi is available in the UK but I think the NICE guidelines require it be used after chemo - however I stand to be corrected.

    I do have some other treatment thoughts - you can write to me directly at rd@ancan.org; alternatively, I am in the UK until Thursday morning so feel free to call me on 07933 961393.

    Onward & upwards, rd

    http:/ancan.org

  • Thank you everyone for taking the time to reply.

  • My husband is taking zytiga in the US - his PSA now 1.34 which is amazing

  • Hi PennySue - glad your husband is doing well. What was his starting PSA?

  • 20

  • Thank you for replying. I hope the treatment continues to go well.

  • Sally - If your husband was diagnosed with a PSA of 6,000 he is metastatic and would benefit from immediate and early chemotherapy along with hormone therapy. The STAMPEED trial speaks directly to him. If you go to the advanced prostate cancer blog (www.advancedprostatecancer.net) I have written a number of posts about early chemotherapy. Specifically read the post at: advancedprostatecancer.net/...

    Early chemotherapy for newly diagnosed men with aggressive prostate cancer is a clear choice and has been a major game changer in the treatment of men at this stage. It is a no brainier in my opinion.

    Joel

  • A friend of mine at Swansea West Wales cancer centre has had immediate che land it seems to be working well. Like Mike it was discovers late and he had retention problems and was also feeling ill at diagnosis. His PSA was in the thousands. Ask any of the specialist nurses for help - Macmillan have been a mine of information for me if you join their prostate cancer forum you can also ask an expert who will give you information.

  • Thank you both very much for that info. Joel I will read your posts in the link you have posted.

    As I may have already mentioned my husband has not had any urinary or prostate symptoms so this late diagnosis has come as even more of a shock.

    He has had back pain for many many years due to a disc bulge caused by sport. He has always coped very well with this but if I'd now likely that this pain has masked bone cancer pain :-(

  • Joel I have had the chance to read the links now - thank you again.

    I have read many reports saying how tough the chemo is (and sadly that in some cases it appeared to make people worse) but we realise that my husband is in a very difficult situation and his options are limited.

  • Hi Sallyyy. I completed 10 cycles of Docetaxel in May of this year. No problems. None at all. Only side effect was neuropathy but that fading now. We all respond differently but we do with any drug or even ice cream or garlic. Consider chemo and I would say act. Scruffybut1.

  • Joel the UK Medical Research Council trial is called STAMPEDE rather than STAMPEED.

    Also Abiraterone ( Zytiga ) was developed in U.K. by the Royal Marsden Hospital but bizarrely was more available in the rest of the Europe a few years later than it was in the U.K. !

    In the last year or so it has become more available here now.

  • Hi Sally,

    Abiraterone is available through a number of routes on the NHS if your husband's oncologist feels it is appropriate for him. I was diagnosed in Oct 2013 with widespread skeletal metastases and had about a month of Casodex before starting Zoladex abdominal injections. At the suggestion of a consultant in the Royal Marsden, I was placed under the fantastic care of Dr Henry Taylor in the Medway Hospital Kent, who arranged for me to receive Abiraterone through the Stampede Trial starting in January 2014, whilst continuing with my Zoladex. This combination reduced my metastases by about 40 - 60% and my PSA went from 620 to 0.2. In Jan 2016 my PSA started to rise slightly and I received 6 months of Radium 223 infusion. This meant my provision of Abiraterone changed from the Stampede trial to the Cancer Drugs Fund. My recent PSA was 5.5.

    I have not received chemotherapy, though I understand that there are suggestions that chemo + anti hormone might be the preferred route for many patients.

    My advice for you and your husband is firstly listen carefully to your oncologist and his team and do not be afraid to ask questions. Remember her husband's life is on the line so don't be shy or reticent. When you hear of new therapies, do your research and ask. Do not be tempted by quack remedies, if they really worked they would have been adopted by conventional medicine a long time ago.

    Secondly, exercise is crucial. Your husband must exercise properly daily and build up his fitness.

    Thirdly adopt a diet that is high in nuts, fruit & veg and low to zero in dairy. Red meat should be reserved as an occasional treat.

    I personally take many supplements that have been genuinely shown to help, but do not think they will provide a magic bullet and make sure your consultant knows about them. Daily aspirin and statins should also be considered.

    MacMillan Nurses and Cancer Research UK and Prostate Cancer Research are invaluable sources of information and literature.

    Very best wishes,

    Niall

  • Thank you so much for that brilliant advice Niall. Do you mind if I ask which consultant you saw at the RM?

  • I saw a Dr Chris Parker. As I am sure you already know the Royal Marsden is a world leading Cancer research and treatment centre and I would be happy to be seen by any of the consultants there. The other aspect to take hope from is that the world is a very small place when it comes to medical innovation and when a breakthrough takes place in one centre and is validated, the knowledge spreads throughout the world in a matter of weeks and months, not years as was the case when I was a young man.

  • Thank you so much Niall.

    My husband is quite fit so will continue with exercise. I am also starting to look at supplements etc just to complement medication (we'll discuss with Dr when see them.)

    He has started having green tea and pomegranate juice and I have ordered turmeric supplements.

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