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User

Posted 16 Aug 2018 at 22:42

Well, some quite disappointing news today. It seems that I failed the heart (MUGA) scan, so my inclusion in the trial is now in some doubt.

I am seeing my onco tomorrow morning and I have been told that he wants to discuss a few points with me. The specialist nurse I spoke to today did, however tell me that I failed the test by a small margin. The onco wants to refer me to an cardiologist for an opinion as to whether my heart will stand up to the rigours of the trial. So it is not a definite no yet, but it is further delay and that does worry me.

I will obviously know more after seeing the onco tomorrow and I will fill in any gaps tomorrow evening.

Peter

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 17 Aug 2018 at 23:26

Well, had a longish chat with the onco this morning. He told me that my heart scan showed that my ejection rate is 47% and it needs to be at least 50% for inclusion in the trial. (I believe that the normal rate is between 55 and 70%)

I also have a long QT time in my heartbeat which is a little on the dangerous side.

So he has made an urgent appointment for me to see a cardiologist and this will be Thursday next week. With the cardiologist support, the onco thinks he can get me enrolled on the trial despite the small failings. I should say that I am grateful to my onco for latching on to this matter and arranging for me to see the cardio so quickly.

It has been ten years since I last saw a cardiologist and I do have a serious heart condition, so maybe it is a good thing that I am now referred to one again.

We did briefly discuss prognosis, but I will skip over that for now. If anyone would like to discuss this with me, send me a PM. I'll just say I'll take what he offered!

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 18 Aug 2018 at 23:11

Thanks to everyone for the good wishes. They are all appreciated very much.

I was out for a while with my wife and daughter today and when we returned home, there was a message on the answerphone. It was the cardiologists secretary ringing to confirm my appointment on Thursday at 9.30. I was impressed to get that message on a Saturday afternoon! They are certainly taking my case seriously!

I did forget to mention in my last post, that the rise in my PSA is slowing down. Having risen from 90 to 119 on the 25th July, on Tuesday last (14th August) it had further risen to 123. But that is such a small increase I feel encouraged. Can the RT reduce PSA? Maybe it was that!

Peter

User

Posted 19 Aug 2018 at 03:29

Dear Peter,

Thanks a million for your message. I woke and couldn’t get back to sleep. I visited here and read your wonderful words. I cannot thank you enough. Just what I needed to hear. I’m still smiling.

The WiFi here is awful - a good thing really because we are techno restricted and that can only be a good thing; right? I’m currently stood in the corner of our chalet with my arm above my head trying to maintain a bloody signal - haha!! As a newcomer I’m not allowed to send a private message to you, so I’m posting here. I’ll reply properly when I get back home - I can’t cope with the pins and needles in my hand as I write. Have a lovely week with your lovely family,

Your friend Vicky xx

Broken crayons still colour

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 20 Aug 2018 at 10:08

Hi Peter,

I’m stuck in the corner again typing a message to you. I look like an audition for ‘Blair Witch Project!’

I read your lovely message and it was just what I needed. Laurence is having a single zap on the middle section of his spine ( He says it is his lumbar).

I hope you’re ok and get on really well today.

You are in my thoughts,

your friend Vicky xx

Broken crayons still colour

User

Posted 23 Aug 2018 at 22:35

Saw the cardiologist today and after an ultrasound heart scan and an ECG, she said she would be comfortable with me going forward on the Re-AKT trial, provided she has the opportunity to monitor my condition regularly through the trial. She has arranged an appointment for me to have another ultrasound and ECG 6 weeks after starting the new medication and then every three months after that. My inclusion in the trial is still subject to the trial sponsor agreeing, but if that is forthcoming, I should be starting the medication next Wednesday.

I hadn't understood that the possible contraindication with a heart condition like mine was with Enzalutamide, not the trial drug. That came as a bit of a surprise, since I have been offered Enzo previously and I wasn't informed that this would be an issue. Maybe if I had chosen Enzo at that time, I may have been told about it, but it would have been nice to know prior to making the choice.

I also went to the local Hospice on Tuesday after referral from my onco. I had an hour long discussion with the palliative care consultant there, where she answered many of my questions. I was a bit disappointed though to be more or less "dismissed" at the end of the session. I was hoping to be invited to join the hospice's community, but that didn't seem to be on offer. In essence, it was just another consultation, with another doctor, largely covering all the information I knew most of anyway.

Regards

Peter

User

Posted 29 Aug 2018 at 22:08

After a long, long investigation period, starting in early May, I have now been inducted into the Re-AKT trial.

I will get the new drugs next Wednesday, then its fingers crossed that they do some good.

Thanks to everyone for their interest in my postings on this matter and all the support and encouragement you have given me.

I will keep posting from time to time to let you know how it all works out.

Peter

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 20 Sep 2018 at 17:12

Dear Peter,

So glad that your urgent cardiology was an error. So sorry that you have awful side effects. I hope they clear soon.

Things here are ridiculously busy. I’ll PM you as soon as I get chance. I’ve been thinking of you every day though!

Your friend Vicky

Broken crayons still colour

User

Posted 21 Sep 2018 at 23:50

Hi Vicky,

It is good to hear from you. I have been wondering how you and Laurence have been doing. I know you have an awful lot going on at the moment, But I hope you are coping. Has Laurence started his chemo yet? If so I hope it isn't taking too much out of him.

It was a relief to find out that there was no issue from the cardiologist. You would wonder how that could happen wouldn't you? But I guess it is the outcome which is most important.

As I said above, I have been suspended from the trial temporarily, just for the weekend, but I am going back to the hospital on Tuesday morning and I should be restarted on it then.

I find I'm not sleeping very well at the moment, so I am feeling constantly tired. That's why I haven't been on here much in the last week or so.

I will try to send you a PM over the weekend, in the meantime, keep your spirits up.

Best wishes to you all

Peter xx

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 11 Mar 2019 at 00:14

Dear Peter,

It is so lovely to hear from you. I have thought about you often and I’m gkad that you’re managing okay. I am unable to send private messages for some reason! It’s still a real ardous task for me to type on here. Drives me crazy.

Also, I haven’t been visiting the forum much lately. Lots going on as usual but we are okay. We are still being as upbeat as usual and tryi ng to do as much or as little as we want.

love to you,

from your friend

Vicky xx

Broken crayons still colour

User

Posted 11 Mar 2019 at 01:06

Dear Vicky, it is so nice to hear from you and I am glad you are keeping as positive as you can be. i have been quite worried about you all and you have never been far from my thoughts.

I will try sending you a PM tomorrow to see what happens, but in the meantime lots of love and best wishes to you all

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 15:05

Following CT and MRI scans last week,, I saw my oncologist on Wednesday. I had gone to the appointment expecting to be given the go ahead for cycle number 6 of Cabazitaxel, but it didn't work out that way.

The onco told me that the CT scan was good news, because it did not show any development of tumours in any soft tissue. This was basically the same news as all previous CT scans. The MRI scan however, seemed to be bad news all the way. More and more vertebrae are becoming involved and the spread is now very extensive. He seemed amazed that I didn't have a lot more pain and indeed, that I was still able to stand up!

In view of the scan results and the fact that my PSA is now in four figures and rising, he concluded that the Cabazitaxel wasn't working at all and he withdrew me from the treatment immediately. He told me that there is no further prescribed treatment he can offer me.

He did suggest two further options "we could try", but that phrase failed to inspire me. He wasn't exactly filled with confidence in them himself and I think he only mentioned them to be able to offer me some hope. The two treatments were Carboplatin and Stilboestrol. He warned that the first was liable to have severe side effects and the latter may not be suitable for me because of other health conditions.

He wants to see me again next Wednesday, so that we can discuss these options further, but I think I have reached the stage where I will decline further treatment. I find myself getting weaker by the day and I have discussed it with family and they are in full agreement. My last prognosis, assuming that Cabazitaxel was going to work was that I could expect to live until autumn, so I can only assume that that timescale has reduced since the Cabbi has failed. The last thing I want is to have to endure the side effects of another treatment in my last months, only to find that has failed too.

If anyone has any experience of the two drugs, Carboplatin or Stilboestrol, I would be interested to know your opinions, I do still have time to change my mind!

Best wishes

Peter

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

User

Posted 11 May 2019 at 23:32

Thanks Lyn and Orm,

I will certainly discuss the Stilboestrol with the onco on Wednesday.

I do think I can rule out the Carboplatin, because I don't really want to start a new chemo right now and in any case it is not a specific treatment for prostate cancer.

The only downside to Stil is that my onco didn't think it was the right thing for me to go on because of my heart condition. But it is certainly worthy of further discussion. I am encouraged by the advice you have both given.

Best wishes

Peter

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