TRITON or RE-AKT

Why are you referring to it as palliative docetaxel? Technically, all chemo for prostate cancer is palliative so it is generally used only to describe those men who have some chemo in the very final stages to make life a bit more comfortable. In your situation, having had it before you were castrate resistant, the research is suggesting that enzo and cabz are both more effective for longer if given after docetaxel.

So all three options are reasonable although you don't need to be on a trial to get enzo so there is presumably a 4th option of having the enzo on its own. The Re-AKT trial means that you would have enzo with a new drug called AZD5363 (or a placebo).

Just a thought about the constipation & diarrhoea. Do you have spinal mets? If so, have you been given advice about the signs and symptoms of spinal cord compression?

Hi Lyn
Despite you being quite rightly a resident expert on this matter I suggest you re-investigate the word palliative. My prof told me I was on a palliative path a year ago even though I could live many a year yet. Google it !!

Never pretended to be an expert - I am just a wife and daughter as you well know. And I am far too aware of the meaning of 'palliative care' - but the definition of ‘palliative chemotherapy’ is treatment given to ease side effects when active treatment has been stopped. Look it up. The point is that until recently, men with PCa were only given chemo at the very end of their life when all other treatments had failed. That has been commonly known as palliative chemo. It is only really in the last few years that 'early' chemo has been given, with the realisation that it can make abi, enzo, and traditional HT more effective for longer.

Edited by member 20 May 2018 at 00:17  | Reason: Not specified

I also signed a form prior to starting chemo, but the box ticked on mine was "to slow the growth of the cancer". I guess it worked on that criteria.

At that time, my Abiraterone treatment had ceased to work and I was feeling generally quite bad. The onco suggested chemo and told me that it should extend my life by up to three months, but he did stress that the three months was in addition to any remaining life I would have without the chemo.

I have to admit that I felt my time was coming and I really did not think that I would still be alive today. The side effects of the chemo were pretty bad and I did wonder if it was worth investing three months of this awful treatment in order to get an additional three months of life. But I did persevere until the onco said enough is enough and explained that the toxicity was likely to outweigh any benefits if I had any more cycles.

So I stopped all treatment in February and was told by the onco to go away and enjoy life as much as possible for a while. I next saw the onco in early May after a CT scan and further blood tests. When I saw him, he couldn't get over how well I was looking and he did ask my wife what she had been doing to me. I did feel so very much better after I got out of the chemo "hangover" I do now feel very optimistic about the future.

But! My PSA had risen, in fact doubled between February and the beginning of May. So he told me it was time to start more treatments. He offered me the three options I mentioned earlier in the thread. Feeling the way I do, I don't find going back onto chemo very appealing, even though it is a different regime. So I am left with Re-AKT as the obvious choice. This guarantees me Enzalutamide for the duration of the trial.

However, if I have had Abiraterone and this failed, is there any chance that Enzo would be effective anyway? Choices are so difficult!

But yes, these trials need the volunteers so I guess it is still my favoured option

I’m glad you find my story helpful for your dad’s situation. This is the idea and purpose of the forum, so that we can state our experiences for the benefit of others in similar situations.

If you feel I can answer any specific questions you think might be helpful, please let me know. I am happy to help.

Best wishes to you and your dad

Peter

I really don’t mind which way we message. In the open forum, others may se what we are discussing and may wish to contribute. With PM we could possibly discuss more on a personal level.

Use whichever you feel most comfortable with.

Look forward to hearing from you

Peter

Here are the criteria for Re-AKT phase II

https://www.ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialId=15629

Fingers crossed you do not have the mutation

A further update:

The research nurse running the TRITON study rang me today. I explained to her that I had no problem with allowing my tissue to be sampled, but that I would rather go onto the Re-AKT study instead of TRITON.

She understood and said that it was probably still a good idea to have the sample tested, but it should be possible to move straight to Re-AKT, at least for the eligibility test.

I told her that I was anxious to commence some kind of effective medication because I am feeling certain symptoms. I told her that I have back pain and increasingly bad pain in my hips. In response to this, she looked at my last CT scan report (from April this year). She said that it appears all growths are stable, so she couldn't understand why I should now be feeling pain in these ares.

She told me to take paracetamol, which does seem to be effective and she would try to get hold of my onco (who happens to be the Principal Investigator on the TRITON study) to discuss these symptoms with him.

So hopefully, I will get some answers early next week (bearing in mind that it is a Bank Holiday)

OK, so things have moved along a bit since my last post. I have made reference to some of this in another thread I hijacked from francij1, but thought I should set it out here for completeness.

I had the bone scan middle of last week and the research nurse arranged for an appointment with my onco for the 22nd June. However, he rang me personally and asked me to go and see him on Wednesday the 13th June. I did find that quite worrying, so I had an anxious couple of days until I got to see him.

He told me that it appeared that I had suffered some disease progression, which was manifesting itself as back pain. He said he wanted to arrange an MRI scan to get a closer look at my spine and that once I have had it, I should ring his secretary to make another urgent appointment with him. In the meantime, he gave me some painkillers and some information on bisphosphonates so that I can discuss them and make a decision at my next meeting with him.

He also spoke about possible further chemo or RT and he made a referral to a local hospice for day to day care.

So the trials are on the back burner at the moment. He did explain that the analysis of the tissue sample would take up to six weeks and we are currently about two weeks into that. He told me that my treatment was the priority and if I needed treatment more urgently, that treatment would be put in place and my involvement in the trials would end.

All in all, it was a bit sobering to hear all that. I have since looked into the hospice he is referring me to and its website is so end of life focused.

The back pain itself has become more continuous than it had been. Up until last week, I had bouts of the pain and then relief from it for a few days. Now, it is painful all the time, though I think the painkillers are taking the edge off it. It is bearable with relatively low dose painkillers at the moment. I do have his authority to obtain higher doses from my GP if I need them. I find I get the worst pain during the night, presumably after the painkiller has worn off. So sleeping is not great. But things could be worse (and I guess they probably will be in time!)

Hi Lyn,

Yes, I am sure that is his reasoning with regard to the referral to the hospice, but I was just a little taken aback by their emphasis on end of life care on their website. But I do also have to face up to the fact that I am nearing the end of my life. I may have another year or two if I am lucky, but equally, I have read a number of posts on this forum where the person has been in relatively good health but has died within a month or two. But lets not get hung up on that!

I am well aware of spinal cord compression, because on the day of my diagnosis 3 years ago, the prostate assessment centre rushed me by ambulance to the local A&E because I was demonstrating classic symptoms of SCC. An MRI scan showed that I didn't have it and I was released (sounds like a prison sentence!) after three days in hospital. When this backache first started, I was a bit concerned in my own mind about SCC, but I am pretty sure it is more due to bone decay than pressure on the cord. The MRI, when I get it, will show for certain, but it is not that long since I had a CT scan (end of April). I do not understand the differences between CT and MRI scans. Do they not essentially show the same things?

He did mention having a dental check before we decide on the Zoledronic Acid treatment. I was a bit upset by that, since I had hoped I would never have to go to  dentist again. I am a bit of a wimp as far as dental work is concerned. My wife tells me I have a low pain threshold (I think Bill in Wales might have something to say about that!), but I am convinced that dental anaesthetic does not work on me! But I do think my teeth are in reasonable condition anyway, so hopefully, there will be no work to be done.

Thank you so much for your response to my post. I do appreciate it.

Peter

Just back home after a meeting with my onco. The news wasn't good, but I not sure I fully understand the implications.

He was explaining the results of the MRI scan I had a couple of weeks ago and told me that vertebrae L3 and C7 have "disappeared". This makes me wonder how I am managing to stand up! I am guessing he means that those bones are effectively eaten away by the cancer cells?

He is proposing a single dose of RT on each of the bones and he has asked to see me again on Wednesday afternoon. It all sounds quite grave!

But on a more positive note (I think!) it appears that I am one of the very few men who have the necessary gene mutations to partake in the Triton trial and he wishes to discuss this further on Wednesday. The Triton trial was not actually my preferred option, but I was talked into having the mutation test anyway by the research nurse. My main objection to this trial was the length of time it would take to check my eligibility, but that time has now passed anyway. The onco does seem to hold out very high hopes for the trial drug and he seems to be recommending it to me (though he has stressed very clearly that it is my choice).

So I guess I have a lot of reading to do before next Wednesday.

Edited by member 20 Jul 2018 at 14:40  | Reason: Correction of grammar

Hi Lyn,

Well I definitely need something! If it is something different so much the better, but I have been on nothing but ineffective Decapeptyl since February. Rucaparib could be the answer.

My mind is racing at the moment and I am making up scenarios and thinking the worst. If I saw the onco on Friday, why would he want to see me again on Wednesday? I am probably overthinking things and his reasoning was logical.

In the meantime, I got the appointment letter for the RT Planning this morning, which is also for Wednesday, so all can be done in one trip.

Thanks very much Lyn, it is appreciated.

Peter

I have also been away from the forum for a while (can’t bear constantly talking about the cancer, nearly eight years of it has worn us down). I sorry to see that your disease has progressed in this way but happy that you have something in the offing to help. My hubby has just had his sixth chemo (which was also called palliative as it is intended to improve quality of life and it has done). We are potentially facing stopping soon, ten were planned but PSA is rising again and pain is rearing it’s ugly head again. John is on a 75% dose and it has been a good move for him so far, but our oncologist did explain that the chemo kills the easy cancer but leaves the nasty stuff (very layman’s terms) and when the PSA starts to rise it indicates that the chemo has done as much good as it is going to, in other words, diminishing returns really. John hasn’t had any of the new drugs (not so new now, abiraterone etc) but has had Radium 223, which did nothing for him. Like you we continue to keep going onwards and upwards, despite everything and  try to enjoy life whilst fighting this off as much as possible. We see ourselves as very lucky, a Gleason 10 still alive after nearly 8 years with mets is a triumph in our world. 

i’m very interested in these new trials, thank you so much for sharing all of this information with us, it’s the forum at its best.

love

Devonmaid. Xx

Went for my first Radiotherapy session today. I say first, but I am only supposed to have one! Unfortunately, they only did half of it.

I was supposed to have a single zap on each of the two affected vertebrae and I thought they were doing both today. But my onco had decided that two treatments would be two powerful to be done on the one day. So they did my lower spine today and I have to go back on Monday to have the head and neck treatment.

They did say that I was having a high single dose and they would normally do a lower dose every day for 5 days, so I suppose I am quite lucky.

The procedure itself was no problem at all. I didn't even know they had started it, but apparently they had finished it! It is now about 12 hours since I had it, but so far I have not felt any side effects (though I am extremely tired but isn't everyone in this heat?)

So back on Monday for the second RT and then back again the week after for the start of the Re-AKT acceptance tests. Perhaps I should rent a flat near Clatterbridge!

Thanks Lyn,

So far so good! No ill effects,apart from fatigue.Not sure about the pain yet, because I am still taking the pain killers, but I am hopeful!

Peter

Hi Devonmaid (Allison)

Thank you for those kind words of encouragement. The tiredness is overwhelming today, but I am taking things easy and not doing too much. The back pain is quite bad today too, but I understand that is a common, but temporary condition which should improve after a few days. Just got to go back for the second part tomorrow. Looks like I need to write this week off!

When I first joined the Stampede trial three years ago, I was randomized to the palliative radiotherapy arm of the trial. But my onco had already warned me that RT to the prostate could cause significant bowel problems, particularly because I had previously suffered from ulcerative colitis. So I withdrew from that arm and I have avoided RT ever since. But now that two bones in my spine are virtually non-existent, he and I decided it was worth a try with the RT. I was pleasantly surprised at how easy it was and, so far at least, the after effects are bearable. So fingers crossed!

Best wishes

Peter

Thanks Lyn and Geoff.

This trial is quite an exciting prospect, but it is going to be hard work I think. I got the schedule of initial appointments this morning, which involves one appointment for a MUGA scan on the 7th Aug, three separate appointments (scans etc) on the 13th August and a further three appointments on the 22nd. That is just for starters!

All assumes of course that I am found to be eligible

I still feel knocked out after the RT treatment yesterday, but hoping that it settles in a few days. But for the last week (it started before the first RT treatment) I started getting a quite pain in my right armpit. It is getting worse by the day and I find it a bit worrying. HAs anyone else experienced this?

Geoff,

It sounds like your story is very similar to my own, though I did see a nurse practitioner at the GP surgery the very first time I went about the pains in my back, She was wonderful and knew exactly what she was looking for. She sent me right away for a PSA test and everything went on from there. That was in June 2015. I have often wondered what might have happened had I got an appointment with an actual GP!

I hope your next appointment goes well and that your onco has some interesting options for you.

Peter

Thanks AC.

That is what I feared myself. In actual fact, the pain has been a little easier today, but it is still there.

I have several hospital appointments over the next week or two, so I am sure it will be investigated then.

In the meantime, I finally got my referral to the local hospice this morning. I think my onco forgot to send the referral off, but a lovely lady radiographer got it sorted for me. So that is another appointment to add to the list.

Peter

Well, finally completed all the Re-AKT eligibility tests this morning. It has been a long and tortuous process and I feel exhausted from it all.

I'm told that I should know on Friday, or worst case Monday. whether I have been accepted on the trial or not. If I am accepted, I will start the treatment on Wednesday. If not, I am left with Cabazitaxel as the only alternative.

I do feel as though it is too late for me now, but I will go along with it and try to keep positive.

Peter

Thank you very much Lyn. Got my fingers crossed here!

Peter