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TRITON or RE-AKT

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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 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.
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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 !!


If life gives you lemons , then make lemonade
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 19 May 2018 at 23:32
Originally Posted by: Online Community Member

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

"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 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 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 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

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 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

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 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
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

User
Posted 30 Jul 2018 at 23:08

Second radiotherapy treatment now completed, so hopefully that is the end of it.


My next hospital appointment is for MUGA heart ejection test, next Tuesday. This is to check physical eligibility for the Re-AKT trial.


So I have got a week off from treatment and time for a much needed rest!


Peter

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 31 Jul 2018 at 23:45

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


 

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

AC
User
Posted 01 Aug 2018 at 22:51

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

User
Posted 07 Aug 2018 at 23:58

Went for the MUGA scan today. It was quite uncomfortable for what seemed like eternity, but I believe was only about 15 minutes. The radiographer though, said she was delighted with the image and I had done very well to remain so calm and still. So I have done something right for once!


On the way out of the hospital, I bumped into my onco. He was unusually talkative and he told me he was sorry about the way my case had developed, adding "but we are were we are". As always after talking to him, I am left reading possibly hidden meanings in the things he said. Today he had no reason at all to speak to me but went out of his way to say those things. Ah well, time will tell. I am hoping that when I get to the hospice consultant, I might get a realistic prognosis.


In the meantime, I have the CT and bone scans next Monday, a full day at the hospital.

User
Posted 14 Aug 2018 at 23:50

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


 

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 15 Aug 2018 at 23:03

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


Peter

 
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