New trial conversation

User

Posted 23 Oct 2016 at 21:26

Hi All, I haven't been on here for many months but we are now approaching something new. They have suggested that my hubby be part of a trial. This is for a drug that they have been testing on gents who have advanced in bones to prolong life and have some good results. As yet we do not know if he is suitable for the trial he is having a bone scan to see if its in his bones and whilst this is being issued to those with bone issues this would be given to him if he has not got it in his bones.

As yet we know very little other than it will be based in Oxford, until we find out he is clear. I thought they said it was called prosper but I may be wrong its always tricky to remember all you discuss.

If this is ringing bells with anyone can they contact me or help give any clues to help. We are due the bone scan in about a week, but part of me is concerned that we are doing nothing more whilst his PSA is rising. This is something we have been very proud of the fact we have not let this happen in the past and been very attentive to PSA levels.

My hubby is still clear of and spreading into lymph nodes or boned that we know of and hope this remains the case. His PSA has tripled in the last three months only from small numbers but its all about the speed isn't it.

If anyone can guide me where to look or what we might need to ask before commencing the trial if this does happen please let me know.

Kind Regards

Debbie

User

Posted 24 Oct 2016 at 14:41

Debbie

There is a trial running at the moment called Prosper. It is for Men who have non metastatic Prostate cancer who have become resistant to Hormone treatments,

The trial is giving men a drug called Enzalutamide. Previously this had only been given to men with Advanced cancer which has spread into the bones and only then subject to quite strict medical criteria. The drug is relatively new and very expensive. The Churchill Hospital in Oxford is one of the trial centres.

When your Husband goes for his bone scan and assessment for the trial a specialist should be available to explain it in full detail.

The objective of this trial is to see if the drug slows down the spread of cancer to the bones or other areas in men who have become resistant to HT.

Usually the monitoring of patients who are participating in a trial is more frequent so that can also be reassuring.

I wish you well

User

Posted 25 Mar 2017 at 23:09

Hi Debbie

I asked a similar question a while back and had a lot of useful replies - here's the thread:

http://community.prostatecanceruk.org/posts/t12372-Enzo-or-Abi---any-views#post154281

It does seem that everyone is different but several forum members have been on enza (or abi) for one or more years and are still finding it effective. But yes, eventually the PCa finds a way around it and then it's on to the next option. It must be worth a try though - it's massively expensive so they wouldn't be using it if it didn't work. Thank heaven for the NHS say I!

Hope it helps your OH - and therefore you.

Eleanor

User

Posted 24 Oct 2016 at 09:32

Morning Debbie.

Can't help with the question but can "bump" you so it doesn't get missed

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails

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User

Posted 24 Oct 2016 at 09:32

Morning Debbie.

Can't help with the question but can "bump" you so it doesn't get missed

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails

User

Posted 24 Oct 2016 at 14:41

Debbie

There is a trial running at the moment called Prosper. It is for Men who have non metastatic Prostate cancer who have become resistant to Hormone treatments,

When your Husband goes for his bone scan and assessment for the trial a specialist should be available to explain it in full detail.

The objective of this trial is to see if the drug slows down the spread of cancer to the bones or other areas in men who have become resistant to HT.

Usually the monitoring of patients who are participating in a trial is more frequent so that can also be reassuring.

I wish you well

User

Posted 24 Oct 2016 at 15:37

Hi Debbie

I have been taking part in a clinical trial at the Churchill Hospital called VANCE01. it has the aim of finding a vaccine to treat men who have early stage prostate cancer! All I can tell you is if your husband does decide to take part in a trial he will be well looked after. The research staff I have had the pleasure to meet have been marvellous.

Good luck.
Brian.

User

Posted 26 Oct 2016 at 20:38

Hi All. Thank you for the responses. Does anyone know of any side effects that people have come across that they were not expecting?

When there are strict criteria is that concerning your suitability or regarding the lifestyle choices you make - such as diet exercise etc.

People tell us that you need monitoring more regularly but as this will involve time to travel and to support him which I want to do as fully as I can I am just curious how often you re monitored and what this would involve?

He has been very lucky and not had too many side effects from the hormone treatment, but for him it worked for many years. he is over five years from diagnosis. My main worry is the gap we are having meanwhile all these things are tested and scanned for. To me it just scares me with time to let the cancer do its thing when we have never let it get the chance.

Edamo can I ask how long you have been on the trial and whether you are really positive to the results so far?

Meanwhile I wish you all health happiness and wealth in that order. Remember ladies men don't always like to talk that doesn't mean they don't wish that they could sometimes.

Thank you again for listening.

Debs

User

Posted 26 Oct 2016 at 20:43

Sorry Edamo, I misread your reply apologies for presuming you were on the prosper trial.

User

Posted 26 Oct 2016 at 22:26

Is he actually on no treatment at all while you are waiting for the trial tests or is he still taking hormones?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Oct 2016 at 03:45

HI Lyn, sorry to confuse you he is on the HT Zoladex still. I will pop his levels on in my next post but its that the first three months of an issue his PSA doubled and then the next three when we stopped the additional meds his PSA has tripled in the three months. Now at 15-5

We are then again going another 6 weeks without additional meds whilst the bone scan is done to prove there is no growth in the bones? We have always tried to ensure we do not have gaps and have had a plan before things happen as to what we will do when they do. This just feels a concern as though we are giving it the chance to come whilst everyone tries to say we are testing its just localised to the prostate.

I think its because when we go back at the end of November (29th) that will be to confirm its not in his bones and see if he is suitable for a trial in Oxford. my concern is whether we will then wait another 6 weeks before the trial commences?

In between which we have Christmas holidays, so in effect this will mean there has been no additional meds by then for 6 months.

He is so eager to do the trial and so am I. It just feels that we are being told this as though its the only option we have. They want to prove these meds work on someone without anything spread but my concern is just timing of these things and the waiting.

Dave has always reacted well to the zoladex compared to some and the last meds made him tired but did work for 6 months tolower his level back down and maintain it.

My sense of humour is not what it normally is and I don't seem to be able to shake off this concern over watch and wait and check,

Thank you so much for taking the time to read all this you must think I am just expecting too much and impatient :)

Debbie

User

Posted 30 Oct 2016 at 00:27

Hard to give you a useful response without knowing more about the other treatments he has already had but I am guessing that once they realised the Zoladex wasn't working anymore, they added bicalutimide for a while and now they have stopped the bicalutimide because the PSA was still rising? So your husband has become hormone refractory - it may be that there aren't any other meds they can add at the moment and the next choice is either enzalutimide (via the trial) or early chemo. Some oncos might have suggested trying a different hormone but once the cancer has learnt to survive without testosterone you need a new approach.

Perhaps phone the nurse specialist to see if you can have an earlier appointment?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 30 Oct 2016 at 00:38

Ah, I just found your old profile and previous posts here http://community.prostatecanceruk.org/default.aspx?g=profile&u=19173
So he had RT and HT and then more HT with casodex (bicalutimide) - he may be prescribed enzalutimide whether he goes on the trial or not. I don't think they stopped the casodex to see what happens, sometimes the casodex works against you by feeding the cancer.

Edited by member 30 Oct 2016 at 00:39 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 25 Mar 2017 at 21:58

Hi All, its been many months since I was last on here. My concerns of feeling like we are doing very little whilst awaiting the all clear to be suitable for the trial was right.

He had tests in Milton Keynes to see if he was suitable in November and was. So we went to Oxford to be tested to see if he could be on the Prosper trial and had to wait a while for appointment etc. The long and short of it is that we have now found out he has a growth on his Lymph Node which measures 6 cm and is the right hand side of his Pelvis on the opposite side of the local advanced part of the Prostate.

So no smarties (or placebo) now as he has to have the real thing enzalutamide. He has just started them on Wednesday this week and so far has not had any side effects.

Thus his status has changed to Advanced. I do thank the Churchill though because if they had not done the additional scan so close to the other we would not have discovered it had changed so quickly.

Are people on the enzalutamide for very long, I have heard a couple of people say it might just be months until his body starts finds its not reacting with it.

If anyone can let me know anything that will be helpful I will have open ears.

Health Happiness to all.

Debbie

User

Posted 25 Mar 2017 at 23:09

Hi Debbie

I asked a similar question a while back and had a lot of useful replies - here's the thread:

http://community.prostatecanceruk.org/posts/t12372-Enzo-or-Abi---any-views#post154281

Hope it helps your OH - and therefore you.

Eleanor

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