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TRITON or RE-AKT

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

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

 
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