TRITON or RE-AKT

User

Posted 24 May 2018 at 15:06

Thanks Lyn,

That is very useful.

I have got fingers and everything else crossed here too. I can always refuse to participate in this trial and I am thinking that is what I should do anyway.

Having read the detailed blurb I was sent by the research company yesterday, it looks like it could be up to 60 days before I started any treatment. At this moment, apart from a 12 weekly injection of Decapeptyl, I have had no treatment since early February and I have to admit that I am feeling symptomatic in some ways. I am getting a lot of bone pain in my hips and my back is aching quite badly. So I don't really want to wait for two months before getting any effective treatment.

I have just had my Decapeptyl injection this morning, so I suppose there is a chance it will improve, but I do have doubts about its efficacy.

The lady in charge of the trial should be ringing me within the next hour or so. I will try to explain what I have said above to her and see what she has to say about it. In principle, I have no objection to them testing the sample, but beyond that, I think I need to think hard.

User

Posted 25 May 2018 at 22:36

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)

User

Posted 05 Jun 2018 at 23:47

My cell samples are in the process of being tested for the gene mutation as suggested by the research nurse. She said it was worth knowing whether I do have the mutations.

I did speak to her about the pains in my back and hips, so she spoke to my onco (who happens to be the principal investigator on the Triton trial), and he told her to arrange a bone scan to try to find out what is happening. So going for that tomorrow. Hopefully, I will see the onco next week to find out the results of the scan.

It is progress, but still no treatment planned!

User

Posted 15 Jun 2018 at 23:03

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!)

User

Posted 15 Jun 2018 at 23:41

Peter, one of the most important things about the hospice staff is that they are usually much better at sorting pain than anyone else you see - GPs & hospitals don't come close. The most important thing for now is to get the pain under control - it would be much harder later if it isn't well managed to begin with. Also, were you given advice about spinal cord compression and what to look out for in the future?

Did he say anything about getting any dental work completed?

Although it isn't perhaps obvious on the website, most hospices offer superb services to people who are not at end of life stage, including holistic treatments, reiki, safe massage (really important that massage is only given by someone who is trained in relation to bone mets), financial planning, counselling for the person or their friends / relatives.

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

User

Posted 16 Jun 2018 at 15:23

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

User

Posted 21 Jun 2018 at 22:34

Had a conversation with the specialist nurse today, she told me that my PSA has risen again to 90.3 (it was 53 on the 1st May and 23 on the 22nd February) so there is a steady rise.

She also told me that the onco suspects that I have a new tumour developing and this may be pressing on my spinal cord, causing the backache I am experiencing. The new tumour, if it exists, is assumed to be very small at the moment, otherwise I guess I would be in hospital right now. The level of pain I have is not severe enough (yet!) to indicate it is an emergency. I have got an appointment for an MRI scan on the 2nd July, so that will show exactly what is happening.

She confirmed that my tissue is currently under examination, so my eligibility for the trial should be confirmed or otherwise at around the time I will next see the onco.

On the face of it, it is all quite worrying, but I am trying to remain optimistic.

User

Posted 20 Jul 2018 at 14:38

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

User

Posted 20 Jul 2018 at 22:46

Your doubling rate is very short so you definitely need something different - Triton might not have been your first choice but you can’t stay as you are :-(

Hopefully the RT shots will reduce the pain rapidly.

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

User

Posted 21 Jul 2018 at 23:14

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.

User

Posted 22 Jul 2018 at 20:52

Fingers crossed for you

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

User

Posted 22 Jul 2018 at 22:58

Thanks very much Lyn, it is appreciated.

Peter

User

Posted 25 Jul 2018 at 23:13

Well, after a long discussion with my onco this afternoon, we have agreed that, subject to acceptance, I should proceed to the Re-AKT study. It has taken a while, and I am still not quite there, but it does look assured and I am happy with that. The Triton study would have caused more delay and I didn't feel I could wait any longer.

Whilst at the hospital today, I went for Radiotherapy planning and had my face mask made and had my skin tattooed! I go back for the actual Radiotherapy on Friday. It is just the one zap on each bone.

This also falls in nicely with the Re-AKT study, since I cannot start the Re-AKT drugs until 4 weeks have passed after Radiotherapy.

Progress at last!!

User

Posted 25 Jul 2018 at 23:38

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

User

Posted 26 Jul 2018 at 23:22

Hi Allison,

Thank you very much for your kind words and support. You have been on this journey with your OH for much longer than I have, but I can understand that you might want to lock it away out of sight for a while. But unfortunately, the cancer doesn't slow down because we don't talk about it.

The longer my case goes on, the less I seem to understand it. I do get very confused these days, so I can't really comment on exactly how chemo works. I do know that my PSA didn't drop significantly during my chemo, but it has certainly risen since I finished the chemo. (A blood test yesterday shows yet another rise, to 119).

I have no regrets at taking the chemo. It was hard going, but I did cope quite well with it overall and I did feel very much better for a couple of months after finishing the course, so on balance, it was worth having.

I am going for one session of RT tomorrow morning. I am not entirely sure what to expect, but I am guessing that I should be able to cope with a single burst of radiation.

My research nurse has spoken to me on the phone today and she is lining up a whole series of tests for me, including CT and bone scans and a MUGA scan to test my heart function. These tests are to determine that I can be accepted on the Re-AKT trial. So nothing is certain yet, particularly since I do have a serious heart complaint as well.

You may have read in my profile that I did have Abiraterone and I would recommend it if John can get it. I had no additional side effects from it at all and my PSA tumbled down whilst I was on it. But it only worked for 10 months before the PSA started rising again. The big attraction of the Re-AKT trial is that everyone on the trial gets Enzalutamide, a drug that NICE will not permit for anyone who has had Abi. I am hoping it will be as effective as Abi was, but we'll see.

I take great inspiration from yours and John's story. I wish you the greatest luck and I will try to keep you informed of the way the trial is going.

Peter

User

Posted 27 Jul 2018 at 23:38

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!

User

Posted 27 Jul 2018 at 23:55

Fingers crossed that the back pain reduces quite quickly for you now :-)

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

User

Posted 28 Jul 2018 at 22:11

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

User

Posted 29 Jul 2018 at 08:03

Hi Peter

John has had various RT for palliative reasons over th past few years, the only one that caused any issues was the one to the prostate, which was done in an attempt to relieve chronic retention. It didn’t work and just caused ongoing bowel issues, but the bone RT was so good for pain. Good luck, yes it’s somehow tiring but rest up if you need to, you have a good excuse.

lots of love

Devonmaid

User

Posted 29 Jul 2018 at 16:20

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

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