Whether to participate on clinical trial

User

Posted 14 Jan 2015 at 00:21

After a voluntary request for a PSA test (with no symptoms) resulted in a PSA of 199 I was immediately (same week) put in for MRI, CT Scan and Biopsi. The prognosis on 7th January was that I has Gleeson 3+4 cancel in prostate and it had spread to Left Hip bones.

HT has been initiated. I am told that Radiology is not useful since the Cancer has Metastatised.

However I have been invited to participate in an NHS clinical trial.

There are 3 groups and I would be randomly alocated to one.

1st Group a is control group with HT but monitored more closely

2nd Group has radiotherapy on the basis that some studies have shown that killing core cancer also helps reduce mestatatised cells.

3rd Group in introduces Zytiga and Xtandi immediately instead of waiting till HT ceases to hold the PCa in check.

I'm new to all this and am not sure I want additional side effects until I have to.

Does anyone have any experiences they could share with me.

Like how long is it before HT ceases to hold the PCa at bay.

Thanks for any help and advise

User

Posted 14 Jan 2015 at 18:42

I've been on two trials now, the first one being STAMPEDE. I have survived 7years with advanced metastatic cancer spread to bone and if I were in your position I would grab the opportunity with both hands. Recent data has shown survival benefits to early intervention. Some men go years on HT alone and some fail early - there is currently no way to predict. Getting yourself in the trials system though gets you access to the best oncologists etc and closer monitoring. This is purely personal view but I wouldn't change a thing in relation to my participation in clinical trials. I genuinely believe that I have survive this long as a result :)

When I was first diagnosed, some of the drugs you have been offered did not exist (at least outside of a lab). I have been treated with two drugs that were not available in 2008. Only research will bring us a cure.

Nil desperandum

Allister

User

Posted 14 Jan 2015 at 12:43

Sorry you have a had to join us, but we are a friendly and informative bunch. The answer to your last question is that it varies. Some people become HT resistant very quickly and others have a longer run. I am still hormone resistant (just) after three years and I have G9 and bone mets. So I feel I have done well but each individual is different so don't take me as the norm though hopefully be encouraged by that.

If I were starting again and were offered this trial personally I would go for it. Group 1 is what I got without the extra monitoring which is comforting for most I think. group 2 was not on offer to me which I think I would have been happy to try and Group 3 gives you early access to the latest drugs though would have implications for access later on I guess, worth checking. Side effects do not seem too bad on these new drugs but I have no personal experience and again it does vary.

I have done fine so far on just HT with some of the usual side effects so I do not have any regrets following that path. Greater engagement through a trial people talk of as positive because it monitors your progress, gives you chances to ask more detailed questions etc but you might for now want to get on with your life and HT only would allow that.

Keep in touch and keep asking questions,

User

Posted 14 Jan 2015 at 13:27

Sorry you find yourself here, but I offer you a sincere welcome. Clinical trials offer many advantages, latest drugs and medical thinking and more frequent check ups to mention a few.

With advanced PCa that has metastasized with a high starting psa but lower Gleason score many men respond well with HT at least initially. There is also a school of thought that supports going in with all guns blazing and adding RT or even chemotherapy as well.

Ask your oncologist to take you through the options and give yourself a little time to evaluate them.

Going on the trial may result in you being assigned to the HT only arm. If you are happy with that then go for it.

If after a few months you are not responding as well as you think you should be or if the side effects are too much you should be able to get a review.

A lot of people on this forum have been part of this trial which is one of the biggest ongoing ones ever.

I wish you all the best for the future.

Xxx

User

Posted 14 Jan 2015 at 16:06

Hi Healey

This is my first post. Following a visit to my GP and subsequent blood tests, a PSA of 914 and clinical findings, he diagnosed prostate cancer. I was fast tracked to see a urologist. He confirmed the diagnosis. An MRI and prostate biopsy(Gleason 4+4=9) confirmed metastatic PCa. I was started on decapeptyl injections three monthly and the STAMPEDE clinical trial was discussed. I agreed to follow this up and was referred to oncology. Further discussions on the format of STAMPEDE were done and I agreed. Following a bone scan, MRI of my hips and pelvis and a CT scan of thorax, abdomen and pelvis, I was randomised to the J arm and have commenced on zytiga, xtandi and prednisolone in December. I am now in my second month of the trial. I am monitored every two weeks by my oncologist(monthly) and research nurse(monthly) with bloods drawn prior to each visit. From an initial PSA of 914 it dropped to 1.1 in November and in December after the trial had commenced to 0.2.

My initial symptoms of neck and lower spinal pain have improved 100% and the pins and needs down my right arm have disappeared. The only side effects I have experienced thus far are hot flushes which tend to vary in number from day to day but are not incapacitating.

As I am only newly diagnosed, there are people on this community who are more experienced than I am in many ways. The one thing I can say is that I had no difficulty in joining the trial. I hope that things progress as they have so far.

I hope this helps in some way for you to make your decision.

I have been very impressed with the information and especially the support that is available in this community.

Good luck,

Davey

User

Posted 14 Jan 2015 at 19:53

I would agree and say go for the trial. If you look at my profile you will see my OH did. He got the HT only arm originally and became hormone resistant after 14 months.

I think you get access to more frequent monitoring and by an oncologist so we would definitely choose this option again.

My OH has had chemo and is now on Enzalutamide and the Oncologist is keen on keeping the PSA low with a good quality of life. Our next update will be 11th Feb.

Good luck and keep us informed.

Glen

User

Posted 14 Jan 2015 at 20:31

I think I'm right in saying that you can withdraw from a trial at any stage if you don't like what it's doing to you. So I agree with those who say yes, go for it. One thing to ask your consultant is whether any treatment received in the trial would prejudice your right to other treatments later on. I think the answer will probably be no, but it's worth checking.
Marje

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User

Posted 14 Jan 2015 at 12:43

Keep in touch and keep asking questions,

User

Posted 14 Jan 2015 at 13:27

Sorry you find yourself here, but I offer you a sincere welcome. Clinical trials offer many advantages, latest drugs and medical thinking and more frequent check ups to mention a few.

Ask your oncologist to take you through the options and give yourself a little time to evaluate them.

Going on the trial may result in you being assigned to the HT only arm. If you are happy with that then go for it.

If after a few months you are not responding as well as you think you should be or if the side effects are too much you should be able to get a review.

A lot of people on this forum have been part of this trial which is one of the biggest ongoing ones ever.

I wish you all the best for the future.

Xxx

User

Posted 14 Jan 2015 at 16:06

Hi Healey

I hope this helps in some way for you to make your decision.

I have been very impressed with the information and especially the support that is available in this community.

Good luck,

Davey

User

Posted 14 Jan 2015 at 18:42

Nil desperandum

Allister

User

Posted 14 Jan 2015 at 19:53

I would agree and say go for the trial. If you look at my profile you will see my OH did. He got the HT only arm originally and became hormone resistant after 14 months.

I think you get access to more frequent monitoring and by an oncologist so we would definitely choose this option again.

My OH has had chemo and is now on Enzalutamide and the Oncologist is keen on keeping the PSA low with a good quality of life. Our next update will be 11th Feb.

Good luck and keep us informed.

Glen

User

Posted 14 Jan 2015 at 20:31

User

Posted 14 Jan 2015 at 22:49

I should have added tha t the reasons for going for the trial were the fact that is completely voluntary and you can withdraw at any time, the extra monitoring and the prospects of benefitting from additional drugs at an early stage.
Go for it.
Davey

User

Posted 15 Jan 2015 at 11:18

Thankyou everyone for helping me to make this decision.
I've now made it and am joining the STAMPEDE Trial.
I dont know which Group I'll be in yet but have 2nd meeting on Monday.
After all your posts and having spoken with the PCUK Nurse plus read up on experiences of people on this site the decisoin became much easier.

I can now move on to the next stage.

Paul

User

Posted 02 Jul 2018 at 18:34

Hi Alathays , My Father is diagnosed with advance prostate cancer with spine metastasis can u tell me what is the survival rate after chemo and hormone therapy pls

User

Posted 02 Jul 2018 at 22:59

On the trials that used these treatments, median survival was 5 years. That is, 50% of patients lived more than 5 years. Treatments that are being trialled now could well improve significantly on this. Good luck!

User

Posted 03 Jul 2018 at 00:33

Bose,

You would't be aware but sadly Allister (Alathays) passed away, in 2016 I think it was. He was one of a kind and went to considerable lengths to learn more about the disease for his own benefit and for others. He was also instrumental in raising large sums of money for PCa.

Barry

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