TRITON or RE-AKT

TRITON or RE-AKT

User

Posted 19 May 2018 at 00:10

It has been a while since I last looked on this forum, mainly because of extreme fatigue which made it impossible to sit in front of a computer screen for more than a few minutes at a time.

I was deeply saddened to find out that two of the stalwarts of the forum, David (Colu-fc) and Trevor (Trevor_Boothe) have passed away during my absence.My heart goes out to their families. I am so grateful to Linda and Julie for continuing their stories right to the end. They did that with warmth, compassion and dignity and I, being a person who is not too far behind these two gentlemen, found it very reassuring to know that they passed away so peacefully. I know it is a long time after the event now, but I hope their families have begun to come to terms with their loss. I send Linda and Julie my very best wishes.

My own current status is that having completed six cycles of palliative Docetaxel in February, I am not on any treatment at the moment apart from three monthly injections of Decapeptyl. A CT scan at the end of April showed that all existing tumours are stable and there are no new ones, so something is keeping them at bay. My PSA however has risen from 23 in February to 53 at the beginning of May.

My onco is concerned about the rise in PSA and has said it is now time to consider further treatments. He has offered me three possible options. These are:

1) Further chemotherapy using Cabazitaxel

2) Participation in the TRITON trial alongside Cabazitaxel

3) Participation in the RE-AKT study which includes treatment with Enzolutemide

Participation in either of the trials is of course subject to eligibility and acceptance. I am currently awaiting details of these trials, but I have obviously done my own research on the internet. At the moment, my favoured option is RE-AKT, mainly because it does not involve chemotherapy.

I would be grateful for any thoughts on any of the three options.

In the meantime, I have been feeling quite well since finishing the chemotherapy, but I do still feel the fatigue and I get a lot of quite bad backache and pain around my hips. I am also suffering from diarrhea, alternating with constipation. So my area "around the middle" feels constantly uncomfortable.

Peter

User

Posted 20 May 2018 at 13:53

Dear Lyn,

I have no wish to get into a debate about the definition of the word "palliative", but I would like to say that over the last three years I have asked a number of questions and sought advice on various matters and you have always responded to me. Without a doubt, you are extremely knowledgeable and I have always found your advice absolutely accurate.

I have an oncologist whose philosophy appears to be to disseminate as little information as possible. He is always too busy to explain things in any detail, so I am left floundering to a great extent. Hence, I ask questions in this forum. It is invaluable to have someone like you on the forum, who sadly, has had so much first hand experience of the disease.

I would like to send you my personal thanks for your contribution to all our lives over the years and I hope it continues for many years to come.

Best wishes

Peter

User

Posted 10 Mar 2019 at 23:16

Well, first of all apologies for not keeping my progress on this matter up to date. I have been a little bit out of sorts since Christmas and haven't felt up to writing.

In actual fact, after 5 or 6 rounds of the trial, all of my stats were way out of control. My PSA initially rose to 461 (it is now 1061) and a CT and bone scan showed extensive disease progression, including new mets in my ribcage. The CT scan did not show any development in soft tissue though, so at that time at least, the disease was still confined to my bones.

But the trial clearly wasn't working for me and all treatment was stopped in January. Instead, I started Cabazitaxel and so far, I have had 3 cycles of that. As I said, my PSA continues to rise and my onco is very cagey about my prognosis. I have managed to draw him into speaking in terms of quality of life and he tells me that I can expect to have a reasonable QOL until the end of the coming summer. Beyond that, I am making it up myself.

So things are not looking too bright at the moment, but I thought I should let you all know in return for your valued support over the months.

User

Posted 19 May 2018 at 23:25

Ah okay - that's why stand alone enzo isn't being offered as a 4th option - no point if abiraterone has already failed. Re-AKT looks like a good option based on your additional info then?

Re your final comment about SCC potential showing on a scan - yes probably (assuming you have a type of PCa that does show itself on scans which it seems you do) but you hadn't given much of your back story so I didn't know you had had a scan recently.

Palliative chemo is usually defined as chemo given to relieve symptoms and give a little more time when active treatment has been stopped so it is unusual that your onco used the phrase. In that sense, it seems you and your cousin both had chemo for the same purpose; to critically injure the cancer cells in the hope that the adjuvant treatment (HT, radiotherapy or whatever) would be more effective.

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

User

Posted 20 May 2018 at 14:06

When my husband was given chemotherapy, he was asked to sign a consent form. The reason given was palliative, he has been given Docetaxel and on the consent form the little box, bottom left said L” to alleviate symptoms and improve quality of life”. So maybe he saw the word palliative and thought the worst.

But I did pose the question improving the quality of life whilst undergoing chemotherapy is a mute point.

User

Posted 20 May 2018 at 14:59

It is hard to know what to do, isn’t it. Chemo can cure some cancers and must therefore always be worth trying in those cases. But for cancers that chemo cannot cure, the benefits and risks have to be considered carefully. When my mum was diagnosed with a terminal brain tumour she declined chemo on the basis that she wanted to be as well as possible for the very short time she had left. When Stan was diagnosed with PCa he refused any treatment that would affect his sex life but did agree to chemo and breezed through it and I have to assume that if he had wavered and agreed to surgery, RT or HT, he would have lasted longer than 4 years.

Based on recent data, if John’s PSA starts to rise I would have no hesitation in encouraging him to have early chemo because I believe that it would give him a longer life. On the other hand, there is no way I would encourage dad to have chemo unless there was nothing else left.

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

User

Posted 20 May 2018 at 22:34

The purpose of the trial is to test the new drug with enzo - it has already been trialled on its own so now they want to see how the two work together. Seems a bit of a no brainer to me but you know your own state of mind.

Edited by member 20 May 2018 at 22:35 | Reason: Not specified

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

User

Posted 21 May 2018 at 00:13

NICE based their decision not to allow men to have abi and enzo on the data that if one fails then so does the other. However, that isn't the experience of everyone and even if it was an absolute given, you would know very quickly if you were on the placebo and could have a re-think at that point?

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

User

Posted 24 May 2018 at 00:39

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

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

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 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 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 23:55

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 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 31 Jul 2018 at 00:50

Good luck

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

User

Posted 31 Jul 2018 at 09:17

Hy Peter and Thank you for your posts.My Onco is talking about a new treatment next time I see her so I found your post interesting.She is also offering RT for pain relief rather than taking more pain killers.Good luck with your next app.Geoff

User

Posted 01 Aug 2018 at 16:40

Peter, given your diagnosis, I suspect the lymph nodes in your armpit may have succumbed to PCa. Talk to your oncologist. Hopefully, it is not that but some psychosomatic effect.

Good Luck

User

Posted 15 Aug 2018 at 00:48

I really hope you get the go ahead Peter

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

User

Posted 17 Aug 2018 at 02:22

Hi Peter,

Fingers crossed that everything goes well for you.

Wishing you all the best news in the world,

Vicky xx

Broken crayons still colour

User

Posted 17 Aug 2018 at 22:10

Thinking of you Peter please let us know how you got on x

User

Posted 18 Aug 2018 at 01:07

Fingers crossed for you Peter

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

User

Posted 18 Aug 2018 at 01:16

Hi Peter,

I really hope all goes well for you and you get the go ahead. You have so much going on

I have just recently been diagnosed with long QT syndrome and am having various tests to see whether I need any jump leads fitted. I’ve been prescribed Bisoprolol and I have a blood pressure machine - so I’m now wired for sound!

We had the official letter today from the oncologis. Very stark, brutal and utterly devestating. The letter is four yards away from me, on the cupboard with all the other bloody letters, but I read it once and don’t want to read it ever again. All I can remember is; median 12 months... As I write Laurence is sleeping so peacefullY An occasional snore escapes Our dog is dreaming and chasing and whining. The telly is on but muted The clock ticks. Our son is still up and I can hear him laughing as he plays a killing game on his PS4. The world carries on and I am lost

When we come back from Dawlish I will contact Macmillan/Mary Stevens to try and get some counselling for our son. He’s had a lot to cope with and lots more to come.

Sometimes it is just too hard to be positive. Some nights just don’t have stars in the sky.

Fingers, toes and eyes crossed for you,

your friend Vicky xx

Broken crayons still colour

User

Posted 18 Aug 2018 at 09:06

Fingers crossed for you Peter.

Ido4

User

Posted 19 Aug 2018 at 23:04

Hi Vicky,

I didn't know there was a qualifying period before you can send PMs, but I assume you did manage to read mine?

Make the most of your holiday and have a wonderful, memorable time.

Speak when you get home,

Lots of love,

Peter xx

User

Posted 30 Aug 2018 at 08:22

Here’s hoping the drugs do a good job Peter.

Ian

Ido4

User

Posted 05 Sep 2018 at 22:43

Finally, I have taken my first trial drug (or placebo) this evening.

I felt a bit weird for a short while after taking it. My vision went a bit blurry and I felt some nausea, but it passed after I had a cup of tea and a biscuit.I am guessing that that effect was not caused by the placebo, but it could have just been a reaction to the long day at the hospital. I think I was quite dehydrated too.

Anyway, we will see how it goes. So far I have only taken the trial drug. I will start the Enzo tomorrow. Then I go back to the hospital next Wednesday for "safety checks"

So I am finally on my way! I'll keep you posted on progress.

Peter

User

Posted 07 Sep 2018 at 23:15

Three days in to taking the AZD and Enzo and apar from a few minor side effects, not had any problems. The biggest issue with it is it is so complicated to get the timing right. The AZD needs to be taken for four days (twice a day) then three days off, so it is important to plan ahead. But I think I've got it sorted now.

But I have been blindsided today. I had a phone call from the cardiologist's secretary, asking me to go to see him (him, not his assistant as last time) on Thursday this week. That is five weeks earlier than originally set. I can't think what the reason for bringing it forward might be. Time will tell.

User

Posted 20 Sep 2018 at 14:48

Two weeks in from starting the trial and the team have suspended the AZD drug for a week! That didn't take long did it?

I am having some severe side effects in the form of diarrhoea, so my stand in onco (my usual onco is off work on long term illness at the moment) wants to see if it reverts to normal if I pause the trial drug for a short while. I am continuing with the Enzo and I should be starting the AZD again next week. But she wants to decide on suitable treatment for the diarrhoea to be taken alongside the AZD.

Other side effects have not been too bad. I am suffering the inevitable fatigue, mild headaches from time to time and a very slight blurring of vision, but not enough to affect daily living.

The appointment with the cardiologist turned out to be a hospital error. When I got to see the cardiologist, she had no idea why I had been asked to go for an appointment so soon. I now have a substantive appointment for the 25th October.

User

Posted 15 Mar 2019 at 18:05

Dear Peter I have looked many times to see if you had posted on the forum recently. I am sorry things have been so difficult for you of late. Thinking of you and sending love and support. PenP. x

User

Posted 10 May 2019 at 20:07

Hi Peter,

So sorry to read your story. I was given Stilboestrol early last year after my Cabazitaxel failed. It is a very old drug and gives minimal side effects. I do remember it made me feel a lot better initially, although I took it for only about three months before the inevitable failure.

However, what it did do was buy some time before I was referred for clinical trials. There are some fantastic things in the pipeline. I urge you to explore this option, and see if anything is available.

Best regards

User

Posted 10 May 2019 at 20:37

Devonmaid's John was on only Stilboestrol for a long, long time - it may be old but still effective for some people because it works in a very different way to the others. Worth discussing next week even if you decide not to try it.

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

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User

Posted 19 May 2018 at 00:46

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?

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

User

Posted 19 May 2018 at 22:51

Hi Lyn,

Thank you for your reply.

I called the Docetaxel chemo as being palliative because that is precisely how my onco described it. He prescribed a slightly reduced dose for me because he was worried about how I might react to it. A cousin of mine was recently diagnosed with breast cancer and she was receiving Docetaxel at the same time as me. But hers was "curative" and much more aggressive than mine (we obviously compared notes very closely). Maybe I am wrong to describe it as palliative, but that is what I have always known it as.

I should point out that I am CRPC (at least by my understanding) since December 2016. That was when I started taking Abiraterone in addition to the Degarelix which had ceased to hold back my PSA. The Abi worked for about ten months and then my PSA started to rise again, so it was stopped in favour of the Docetaxel.

At the time of starting the Abi, my onco did offer me the option of using Enzo instead of the Abi, but I chose the latter and it worked very well for a while. He has not mentioned Enzo as a standalone option this time. I don't see him again until August, so I won't have the opportunity to speak to him about Enzo prior to making my choice of the options. He did also suggest before the chemo that I might prefer to use radium 223, but his recommendation was the chemotherapy and so I made that choice.

Yes, I have got mets in my spine and the onco has cautioned me in the past about being very watchful for MSCC, so it is always at the back of my mind. I must confess to having a slight worry about it in my present situation with the back pain, but I am fairly convinced that it is muscular. I hadn't actually linked the diarrhea/constipation problems as potential MSCC symptoms, so I am very grateful to you for pointing that out. I will proceed with caution on that! As it happens, I do have a GP appointment this week, so I will discuss it then. Just a small point, but wouldn't any tumour which was in danger of pressing on the spinal cord be shown up on the CT scan I had in April?

Thanks for your advice

Peter

User

Posted 19 May 2018 at 23:23

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 !!

User

Posted 19 May 2018 at 23:25

Ah okay - that's why stand alone enzo isn't being offered as a 4th option - no point if abiraterone has already failed. Re-AKT looks like a good option based on your additional info then?

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

User

Posted 19 May 2018 at 23:32

Originally Posted by: Online Community Member

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

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

User

Posted 20 May 2018 at 13:53

Dear Lyn,

I would like to send you my personal thanks for your contribution to all our lives over the years and I hope it continues for many years to come.

Best wishes

Peter

User

Posted 20 May 2018 at 14:06

But I did pose the question improving the quality of life whilst undergoing chemotherapy is a mute point.

User

Posted 20 May 2018 at 14:59

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

User

Posted 20 May 2018 at 19:52

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!

User

Posted 20 May 2018 at 22:34

Edited by member 20 May 2018 at 22:35 | Reason: Not specified

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

User

Posted 20 May 2018 at 22:40

But only if you get the drug and not the placebo. I understand what you are saying, but there is a 50% chance that I would not be getting any effective treatment at all.

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

User

Posted 21 May 2018 at 00:13

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

User

Posted 21 May 2018 at 14:11

Yep! That makes sense and I think that is the way to go. Thanks once again for all your advice. It has helped tremendously

User

Posted 21 May 2018 at 20:44

Hi Petergkelly thank you for returning to the forum and sharing your experiences and possible future treatments. It is useful to people like me (daughter of Dad with aPC) to hear how other people are managing their own situations. My dad’s situation sounds very similar to yours so your posts really struck a chord with me. PenP. .

User

Posted 22 May 2018 at 00:19

Hi Pen,

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

User

Posted 22 May 2018 at 07:02

Thank you Peter that’s incredibly kind and yes I would really like to ask you some questions if you don’t mind. Shall I PM you or would you prefer me to ask via a thread on the forum?

User

Posted 22 May 2018 at 14:46

Hi Pen,

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

User

Posted 23 May 2018 at 22:58

A bit of updated information I received today.

The TRITON study, phase 2, requires participants to have certain gene mutations within their tumors. Apparently, only one man in 10 is likely to have this gene mutation, so it is unlikely that I (or most of us) would be accepted on the trial anyway.

I have been asked to sign a consent form to allow the product of my original biopsy to be examined for the mutation required. If it is not present, then I would not be allowed to take part in the trial, but would be rolled forward to check on eligibility for the Re-AKT study. I am not yet aware of the specific requirements for Re-AKT. We are going forward one step at a time, but at least it is some progress!

User

Posted 24 May 2018 at 00:39

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

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

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