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Chris J's Journey

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User
Posted 30 Mar 2017 at 11:19

Hi Chris

All the very best

Gordon

 

User
Posted 30 Mar 2017 at 14:15

Hi Chris,

Onwards to this scan and hopefully an answer. Make sure you get the scan on a CD! I would probably want more than one set of eyes on that scan .. just a thought but we have found if we don't ask for copies of everything they are not automatically offered..

Keep pioneering!

Regards

Clare

User
Posted 18 Apr 2017 at 18:19

Travelled from Southampton to London yesterday £47 return. Stayed the night in hotel £75. Met relatives which was nice. Walked from Euston to Buckingham Palace in the sun which was lovely , and then received the call that my UCLH scan had been cancelled. Walked to hospital and had a mini meltdown involving manager and tissues and a full waiting room. They have reimbursed me and traveling again this Friday for scan Saturday. To be fair it was the same at Oxford. These radioactive tracers are immensely hard to produce and get the timing right etc.
I have to say I am immensely distressed after months of waiting. Very wearing mentally all this :-((

User
Posted 18 Apr 2017 at 18:30

Sorry for you but at least you had a nice walk to Buckingham.

Don't get into despair.
Lola

User
Posted 18 Apr 2017 at 18:31

Oh what a pain Chris. So sorry that you had a wasted journey - I can well imagine the stress levels.

All bits crossed that the new appointment goes to plan.

E

x

PS And congratulations on your zen determination to appreciate the relatives and the sunshine! An impressive glass half full view of a broken polystyrene beaker under the circumstances.

User
Posted 18 Apr 2017 at 18:39
I'm glad that you you had a lovely walk in the sunshine and a positive meet with your relatives but can only imagine how receiving that phone call must have felt.

Fingers crossed that everything goes well on Saturday for you. Hang in there.

Kind regards,

Kevan

User
Posted 18 Apr 2017 at 19:08

Sorry to hear that Chris.. mini melt down sounds completely like the only way to go in those circumstances.. fingers crossed for the new plan. Definitely a good week to make lemonade. Clare x

User
Posted 18 Apr 2017 at 19:55

Oh no. I can totally imagine how the cancellation went down having seen OH crumple when we arrived at the hospital one time to find they had forgotten to put him on the list.
So glad you don't have long to wait for the rescheduled scan.
Stay strong and wishing you the best for Saturday.

User
Posted 18 Apr 2017 at 19:59

Thanks guys. I got the call as I was slowly ambling back from the palace. It turned into a power-walk with rucksack on and I was fuming.
Funnier still , when I got there I got in a lift which only served floors ground to 3. So I got in another lift which only served floors 6 to 12. I needed floor 5 for Nuclear medicine. So I'd walked to the palace and back ( six miles ) and then stomped up 10 flights of stairs. No wonder I had a wobble. The NHS staff were wonderful as ever. It wasn't their fault as the tracer is externally produced.

User
Posted 18 Apr 2017 at 23:17
Wow Chris I think you held it together magnificently after the build up , the walk and the stairs plus the lift issues ( I am not the best passenger in a lift ) I am that person that panicks and hits every button except the right one and that is just going one floor . So if you ever get trapped in a lift with a slightly bonkers lady wearing a blue dress that's me🤗.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Apr 2017 at 03:28

Hi Chris,

So sorry you've had all this trouble, it's really frustrating.  I hope it finally gets sorted on Saturday.

You've been through enough.

Take care.

Steve

User
Posted 19 Apr 2017 at 07:02

Sad and annoyed for you Chris and glad that your mini meltdown produced results in an appointment for this Saturday.

It's a shame that you had to reach that stage in the first place though.
It's all very wearing on the body and mind.

I know what you mean about the staff at UCLH. Grandson was on the Teenage Cancer trust ward there and the staff cannot be faulted.

Fingers crossed for Saturday for you

We can't control the winds - but we can adjust our sails
User
Posted 19 Apr 2017 at 10:57

Oh dear. But on the up side CJ, look how far you have come in the short time we have known you. A year ago, this would have been devastating and would likely have pushed you over the edge; instead, you had a wobble and then got yourself upright again.

Progress on the emotional side, if not on the nuclear scanning side :-/

Keep being strong, my friend, you are doing great x

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

User
Posted 19 Apr 2017 at 18:31

Chris

Frustrating, to say the least, but you're a fighter. If anything is going to get the cure/long term control it's that positive attitude you have of not giving in.

Hope all goes well Saturday.

Ray

User
Posted 19 Apr 2017 at 22:18

Chris,

You have dealt with so much, so well. You continue to amaze me wth your resilience and fortitude. Keep at it young man.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 20 Apr 2017 at 14:15

Scan just cancelled again after rebooking a train and hotel already. No future date given either. Production issues apparently. So whilst I'm not in any pain I have this cancer still growing with psa at 3 with zero treatment at present nor HT etc etc. I'm shortly due to give up ........

User
Posted 20 Apr 2017 at 14:28

Oh my god! There isn't anything you can do? Complain, report against medicals responsible for it...
So sorry! Hope you can soon get the appointment and treatment.
Lola.

User
Posted 20 Apr 2017 at 14:37

The down side of opting for something which is still niche rather than widely available, I guess :-(

Don't give up, it will happen at some point and if you get very anxious about it you can fall back on repeating the choline scan instead.

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

User
Posted 20 Apr 2017 at 15:10

Aargh. I desperately hope they can reschedule for you soon. Or as Lyn suggests you can opt for plan B.

User
Posted 20 Apr 2017 at 15:54
Hi Chris

.. thinking of you and reading posts. Wish I could help.

Gordon

User
Posted 20 Apr 2017 at 16:56
Sorry to hear this Chris, hope it can be rearranged quickly so you can have peace of mind

Arthur

User
Posted 20 Apr 2017 at 17:17
CJ

Never give up, we have both been close to that a few times, you have overcome so much during your journey, keep going mate.

Thanks Chris

User
Posted 20 Apr 2017 at 20:00
Devastated for you Chris as I know how determined you were to get it. Fingers crossed they'll sort it soon.

Ulsterman

User
Posted 20 Apr 2017 at 21:36
Please don't give up.... you have worked so hard for this, it's worth the fight, or trial .... Chris I'm so sorry you have been failed.....please keep going.
User
Posted 21 Apr 2017 at 19:47

Can't even put into words the running around this week, but I shouldn't complain at our grand NHS.
After the heartache I got another call yesterday saying they could scan me today due to a cancellation. So off I went to London again and stayed the night , and today successfully underwent the PSMA PET scan. I consider myself very lucky even though I fought for it. Quite out of pocket , but considering I was willing to pay for the whole scan two months ago !!!
Anyway , maybe results Wednesday at Onco appt. Im actually not too stressed tbh. Worn out.
Thanks all for replies

User
Posted 21 Apr 2017 at 20:14

So happy you finally got the PET. done.
Looking forward you having good results.

Best wishes

Lola

User
Posted 22 Apr 2017 at 11:42
Great news Chris, hope all goes well with the results.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 22 Apr 2017 at 15:53
So pleased for you Chris. You have fought hard for it so well done you.
User
Posted 23 Apr 2017 at 12:55

Well done Chris, your tenacity has paid off! Wishing you all the very best with your results!

User
Posted 23 Apr 2017 at 17:15
CJ

I hope Wednesday's results give you a clear plan for the future.

Thanks Chris

User
Posted 23 Apr 2017 at 22:31

I really hope you get the results your hoping for Chris. You derseve some good news after all that you had to go through to eventually get the scan !!
Take care
Viv

The only time you should look back is to see how far you have come
User
Posted 25 Apr 2017 at 19:15

Info only
In true NHS style my appt was cancelled for tomorrow. Secretary wouldn't explain why. Does it ever get any easier ?? Rearranged for next Wednesday.
Obviously your mind wanders. My gut feel -- they got the scan pictures today but not the detailed report as it's too early. Also it will be the first PSMA scan my Onco has seen. Or they saw something really bad and want to throw it through an MDT meeting before they see me .........
Wine o'clock I reckon !

User
Posted 25 Apr 2017 at 19:38

Or the weather forecast is so terrible he has popped off to Marbella for a few days?

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

User
Posted 25 Apr 2017 at 19:40
After all the sh1t you've been through, buy yourself a bottle of Duke red from Morrisons, £8, and tell me what your verdict is. If I could do this wine intravenously I would

Bazza

User
Posted 25 Apr 2017 at 19:48

Bloody annoying Chris.

Give Bazza's wine a try. Might as well be doing something useful while you wait eh :)

We can't control the winds - but we can adjust our sails
User
Posted 25 Apr 2017 at 19:57

Haha
I will give Bazzas wine a try, but not on my normal overnight intravenous set-up lol. I think I may want to taste this one .....

User
Posted 25 Apr 2017 at 21:04

Hi Chris, I somehow missed you had the scan at last - your determination paid off so well done on that. If the report showed something really bad would they hang around for another week. Fingers crossed you can soon get it sorted.

Ray

User
Posted 26 Apr 2017 at 21:18
Keep going ! Keep going

The lady in blue has had terrible flu

But she is behind you

100% per cent that's true

The scans are important , as well you know

But the sights in London are a wonderful glow

Take time to wonder ! To take it all in

There's nothing like London , to soak it all in

The rhymes are a bit naff but just wanted to say how proud I am of you .

Keep going !

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 May 2017 at 17:48

Hello
So very disappointing. PSMA PET has shown zero cancer anywhere. Which would be great except for a rapidly rising PSA. Onco very much expected spread and make a plan forward. He has asked me to start HT tonight ( Bical 150 and Tamox 20 ) and has given me four weeks to decide on RT which he says he advises. He's simply not sure any more than we are.
I know a bunch of you will say " do the RT it's fine " , but he's still not offering cure and using the words kitchen and sink. I've rejected RT twice because of mental issues and tbh the chances of me attending hospital 35 times for a treatment I desperately don't want and which may not help are very slim in reality. And it could ruin all the recovery I've achieved. And yes I know dead men don't get erections
I've walked out and am away for a week so won't start HT till I'm home. I won't be able to make a decision like the last 2 times.
Just want to be left alone :-((

User
Posted 03 May 2017 at 18:15

Appreciate you wanting to be alone Chris but you know full well that we are here when you're ready.

I am so sorry that the PSMA wasn't more definitive for you.

Chin up young man. Wishing you strength and peace.

Best Wishes from

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 May 2017 at 18:41

Hi Chris,

Looking at your biog, it seems when you were on the HT, it was doing its thing and may be RT would give it a good "kickin" too?

This dropped into my inbox today which might be worth a read....

http://www.oncologynurseadvisor.com/prostate-cancer/aggressive-combination-approach-efficacious-in-metastatic-prostate-cancer/article/654514/

I wish you strength and of course peace of mind

Flexi

 

 

 

User
Posted 03 May 2017 at 20:16

Hello Chris,

I'm ever so sorry to hear about your scan result. But I'm confused.

If you have zero cancer, how come your PSA is rising? I'm not going to be the one, to blindly tell you to go for the radiotherapy, as I still remember how inconvenient it was. Indeed I was told today, that I'm still recovering from its effect, even after 14 months.

I pray all goes well for you.

 

Frank.

User
Posted 03 May 2017 at 20:29

Hi Frank
I had margins left on my bladder neck and 5 cancerous lymph nodes during surgery. He feels tiny margins can't be giving this psa and doubling rate , but has no other option to offer RT as a last ditch.
In all honesty I think if they get these scans right then they are amazing. But I think they don't often get them right. The tracing dye is immensely difficult to produce and time correctly. Two cancelled scans at Oxford last minute and two cancelled scans at London last minute. I don't think they've streamlined the technique yet to be honest and am fearful I'd be undertaking the RT on false data

User
Posted 03 May 2017 at 20:34

Ho hum. The other option is to hold your nerve for a while longer, not have RT, not have HT and see whether anyone will agree to another scan in 6 months. If nothing has shown up on the PSMA then these are still VERY micro-mets and could be anywhere so what was his rationale for RT and where is he going to aim it????

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

User
Posted 03 May 2017 at 20:48

Chris,

Your analysis of a failed scan seems the only logical answer to me.. in which case they should admit it and get you lined up for a new scan asap.

Regroup sir! You need a plan that makes sense and as Lynn says what was his rationale for RT with nothing to aim at!?

Sometimes when a plan makes no sense it might be because it's nonsense

Clare

User
Posted 03 May 2017 at 21:03

Chris

Not a good read. Whatever path you take will involve some unknowns so take time out before deciding. The choice may well come down to the not unusual one of what is more important more severe side effects with a possible longer life or the opposite.

Good luck

Ray

User
Posted 03 May 2017 at 21:49

Thanks everyone.
I like my Onco but he insisted PSMA PET didn't exist in this country until I told him it did ( helped by you guys ). He categorically insisted today that no one EVER does 20 RT sessions on a man post surgery , yet we all know they do !! Out of touch maybe. He knows I have small margins on bladder so I guess he can only see that in front of him. He would aim at lymphs as well. Filled with dread and I reckon no way will I have it done without evidence. I read some of your awful reports about swollen legs and bladder spasm and bowel problems and it's not for me. Not even the chance. Feeling fearful but brave enough to face it head on. I'm helping care for a guy at the moment that has just given up Abi due to S/E's. I need facts not fiction now to progress I think

Edited by member 03 May 2017 at 21:53  | Reason: Not specified

User
Posted 03 May 2017 at 22:01

Ah sh*t.
Take your time. No point at all jumping into treatment you're not happy with.
I know you can work through this and move forward.
All the best. Julie

User
Posted 03 May 2017 at 23:37

Originally Posted by: Online Community Member

I like my Onco but he insisted PSMA PET didn't exist in this country until I told him it did ( helped by you guys ). He categorically insisted today that no one EVER does 20 RT sessions on a man post surgery , yet we all know they do !! Out of touch maybe. 

 

You are being more generous than I would be! 

 

Second opinion / alternative onco perhaps? 

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

User
Posted 04 May 2017 at 06:57
Originally Posted by: Online Community Member

Hi Frank
I had margins left on my bladder neck and 5 cancerous lymph nodes during surgery. He feels tiny margins can't be giving this psa and doubling rate , but has no other option to offer RT as a last ditch.
In all honesty I think if they get these scans right then they are amazing. But I think they don't often get them right. The tracing dye is immensely difficult to produce and time correctly. Two cancelled scans at Oxford last minute and two cancelled scans at London last minute. I don't think they've streamlined the technique yet to be honest and am fearful I'd be undertaking the RT on false data

Good morning Chris,

I am sorry to poke my nose in on this thread, but I thought my experience may be of interest.

I have had 2no PSMA PET scans over the recent months. Mine were done at The London Clinic. Both scans were incredibly detailed and we're able to advise my Onco in miniscule detail where my secondary mets were.

Following the 1st scan the treatment followed was Chemo. The 2nd scan was to identify it's effectiveness. Again the PSMA PET scan picked this all up in minute detail.

You indicate that they might not have got the scans right in your case. I would be amazed if that were the case. These things are not cheap and I am sure BUPA would not have authorised these tests going ahead in my case on the assumption that it may or may not work. No chance.

As regards your future treatment, I am confused. Why are you looking at RT where there does not appear anything to aim at?

Should you not be considering Chemo if there is something out there?

All the very best wishes to you Chris

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
 
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