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Advanced prostat cancer part 2

User
Posted 21 February 2017 09:28:29(UTC)

Nope. Apparently won't be me.

It's like playing one of those penny games at the funfair. Roll your penny down the slot and hope you'll tip it over

We can't control the winds - but we can adjust our sails
User
Posted 21 February 2017 09:29:06(UTC)

Ah ha. I did it!!

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 21 February 2017 11:44:34(UTC)

Dear Julie,

i am so pleased to see you both get some good news after all the trauma Trevor has been through.

Those results must be such a boost for you.

Super Trevor kicks ass yet again. Amazing!


Big Hugs from George & Lynn

Thanked 1 time
User
Posted 21 February 2017 19:09:56(UTC)
Hi Julie,

I'm so pleased the news has been better recently. Long may it continue.

Steve
User
Posted 21 February 2017 19:53:20(UTC)

Great news Julie....

Bri

User
Posted 21 February 2017 20:48:25(UTC)
Flipped and rolled Guys thank you all for your support over the last four years you really don't know how important you have all been seriously you are all mega to my well being 😘
You are all my safe haven , my outlet to the roller coaster ride that this disease wants to spin me on and it spins me quite often .
Just want to say a Huge Thank You to every one of you.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 6 times
User
Posted 13 March 2017 20:57:34(UTC)

Julie is having trouble accessing the forum (her log in doesn't work so perhaps it is a glitch but it may be that the moderators are finally taking action to minimise the risk of us all laughing too much) but she has asked me to pass on the following:-

"Trevor has been blue lighted today with chest pains , sweating and blurred vision to Peterborough we are still waiting on blood results.

He had a appointment for a nuclear scan on Thur to investigate but things are escalating. I will update as soon as I'm able to.
Xx"

Carol at PCUK is working to resolve the problem and get Julie back with us asap but I have asked her to let me know what is happening in the meantime. T has been blue-lighted so many times before but I know we will all be worried by this news.

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


Thanked 2 times
User
Posted 13 March 2017 21:22:17(UTC)

Lyn, thanks so much for getting that message to us all.

Please pass on our love and best wishes to Julie and Trevor.

They are in our hearts, thoughts and prayers.

George & Lynn

User
Posted 13 March 2017 21:35:00(UTC)
So sorry to see this :-(
Thinking of Julie, Trevor and their boys x
User
Posted 13 March 2017 21:47:28(UTC)

Tried to message you Lyn but your inbox is full...

Thanks for this worrying update and for the message from Julie to me - typical of her to be concerned about others even as she is in dire straits herself. Just wish I could do something useful but all I can do is send my love and hugs and appreciation for all she is to all of us. Will keep hoping/praying for a miracle turn-around.

Hugs to you too. You are such a constant support on the forum - and beyond it clearly. Thanks for everything.

Eleanor

x

User
Posted 13 March 2017 22:02:14(UTC)

And an update ....

"Trevor is home and looking good so drama over although I have no doubt there is a blockage somewhere but the scan will reveal all on Thur.

It's been a very long day xx"

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


Thanked 6 times
User
Posted 13 March 2017 22:50:14(UTC)

Good to hear T is home. Hoping scan results give some positive news

Bri

User
Posted 13 March 2017 23:39:39(UTC)

Crikey! That man is clearly as extraordinary as Julie herself.

Well done both. I'll sleep better for knowing that he's home and that things are calmer.

Love, hugs and more hugs.

Eleanor

xxx

User
Posted 14 March 2017 06:50:14(UTC)
It's frightening to read what Trevor ( and you) have been through and of course I would not wish in anyone however thank you so much for sharing what happens as it gives great hope to me and I am sure others that things like a " blue light" does not have to be catastrophic. I don't post on your threads enough but I am always rooting for you both.
Kev
Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 14 March 2017 09:13:03(UTC)
Thinking, believing, praying, hoping, staying.

Bazza
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
User
Posted 14 March 2017 10:41:13(UTC)
Firstly a Huge Thank you to Lyn for updating for me.
I haven't been able to log on since last Thur but thanks to Carol she has been able to sort it for me 👍

Had I have been able to update on Sun my post would have been everything is tickety Boo and we are chugging along nicely so fast forward 24hrs and the tornado struck.
All was fine until lunch time and then Trevor had tighning in his chest /nausea/blurred vision /sweating and excessive yawning , the yawning isn't described as a symptom in heart attacks but in previous attacks with Trevor this has happened so something to watch out for guys.
It is probably lack of oxygen to the brain caused by blockage in the arteries.
He took his gtn spray but the pain continued
So I hit the panick button , ecg was normal but he has had normal ecg before and then 20 mins later had a full blown heart attack so the paramedics decided to blue light him to Peterborough .
His blood tests X2 were normal ( they check for markers to see if the Heart has been under stress) it has got a name but I can't remember it.
He was allowed home last night looking and feeling much better! Phew!

So the Nuclear scan to check his arteries was already booked for Thur so that will go ahead as planned he has been having niggling issues for a few months hence the investigations . When we have been this route previously while waiting for appointments he has managed to jump the que by having a heart attack so you can understand my haste to hit the panick button and thank goodness I have in the past because quite honestly I wouldn't be sitting here typing about him if I hadn't.

Bless Trevor he is still trying to persuade me it was probably indigestion as ecg and bloods were normal but I know it wasn't indigestion and there is a blockage somewhere. Just hoping it is a collapse of previous stents and not that he will need new ones as that is a bigger procedure. Plus he already has 8 stents.

So today the sun is shining and everything is calm let's hope it stays that way .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 14 March 2017 11:03:30(UTC)

Soooooooo good to hear from you Julie - I'm sure the entire forum breathed a collective sigh of relief when your mad sideways avatar of Trevor and his ride-on reappeared on this thread. Sending lots of love and hugs and hoping for a good outcome from the investigations on Thursday.

All bits crossed permanently.

Love

Eleanor

xxxxx

 

User
Posted 14 March 2017 11:09:23(UTC)

Gosh another part of the rollercoaster. Glad things are on an even keel again for now though by the time this is moderated who knows what will have happened. Hoping for calm and mundane.

User
Posted 14 March 2017 16:23:52(UTC)

I wish the sun could continue to shine on all of you forever. X

We can't control the winds - but we can adjust our sails
User
Posted 14 March 2017 21:47:19(UTC)
So you get flat out at work away for just a short while and all hell breaks lose
Firstly why can't I bloody post without it going for moderation
Obviously we need Irun to raise more money to get it fixed come on PCUK get you act together we would have sacked the I.T team by now how long has it been going on for 😈

So Julie my running mate keep strong that man keeps amazing me. Hope to pop down soon. Love to all the family

From all of us xxx
Don't deny the diagnosis; try to defy the verdict
User
Posted 14 March 2017 23:42:33(UTC)
OH My Si Superman you will neve know how much your post means to me a friend and a Golden Oldie any time you want to visit my draw bridge is open. 😍

Yes yes yes what is happening with our posts WHY are they going through moderation before appearing I feel like I am in some sort of time lapse OH I get it , it's just in case I say TITS 😆

BFN
Julie X
Ps I can see you chuckling Si. Much love to Ness and the girls xxxx
NEVER LAUGH AT A LIVE DRAGON
Thanked 4 times
User
Posted 15 March 2017 00:10:37(UTC)

My head is full of disturbing images of po-going up open drawbridges on mobility scooters shouting 'tits' in a time-lapse. Best I go and lie down in a darkened room with a wet flannel over my face until I calm down.

Gems you lot!

E

x

Thanked 2 times
User
Posted 15 March 2017 09:00:47(UTC)
J

Your posts really should come with a warning, to burst out laughing with a new SPC in is quite painful. Keep going girl.

Thanks Chris
Thanked 1 time
User
Posted 15 March 2017 10:23:21(UTC)

I've been trying to post to say hurrah for some calm for you Julie but it wouldn't come through for some reason.
Anyway I'm so pleased today is an easier day x

User
Posted 16 March 2017 17:49:44(UTC)

Keep calm and carry on! Julie you're a star, when panic sets in you just seem to cope remarkably, well done

BIG XxxxhugsxxxxX from us.


Chris.xx

User
Posted 17 March 2017 02:14:26(UTC)
An update on today's activities,
Phase one of the heart testing completed the first part of the test is what is called a stress test so strictly no caffeine or food for 6 hrs prior T was then injected with a mystery substance ( I have only said mystery because I can't remember what it was)😄
He then was subjected to various physical activities which brought on the same symptoms as he had on Mon so chest tightening / sweating / nausea etc. Call me an old cynic but I don't know how much that cost in man power/ equipment/ etc to tell them what we had already told them on several different occasions 😤

So the second part of the exam but only if you fail the first part which I know protocol has to be observed I get that but we could have skipped plan A and gone straight to plan B i.e. The scan which if only they had listened to Trevor and myself could have saved oodles of NHS money / Trevor's stomach and my ears listening to how hungry he was at this point.
Given his history and Mondays episode skipping plan A would make sense well to me anyway. So nuclear scan completed and guess what come back on the 30th for the results .

I really have to question A how effective this is and B is it not in some cases i.e. Trevor's case much quicker and cheaper to go starlight to the most obvious cause and just do an old fashioned Angiogram. 🤓
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 March 2017 07:55:20(UTC)

Julie,
THEY think they know best, you can't beat the system!
And then one realises why the NHS are short of money, just an aside, my Shirley had an eye appointment, was asked to have a blood test before said appointment, but at appointment they didn't ask about the blood test result.

Won't be long now until page 21

xxxxhugsxxxx

Chris.xx

User
Posted 17 March 2017 08:26:49(UTC)

Annoying I know Julie but you can't (well, rarely) beat the system. I suppose they know what they are doing. Too many targets to reach so realistic health care gets lost in the panic.

Hope Trevor is recovering today

We can't control the winds - but we can adjust our sails
User
Posted 17 March 2017 08:59:18(UTC)

Julie, if Trevor is on the same pathway as my dad, you could be in for a long wait.   Last August Dad reported chest pains and breathlessness on slight exertion.   He had a stress test which showed further testing required.  Booked in for ECG - result - angiogram required.  So in September he had an angiogram but they had to stop half way through as he was allergic to the contrast dye they injected.  They had only scanned the left side of his heart which showed mild to moderate atheroma.  Cardiologist said they would have to do a scan on the right side of his heart but if it was the same as the left side they wouldn't be too concerned.    October and November came and went with no appointment for a heart scan.  I kept nagging my dad to chase it up but unfortunately at 75 he has too much faith in the caring profession and was convinced they would send an appointment.  Finally just before Christmas I persuaded him to chase up the missing heart scan.  It was clear that the referral had got lost in the system - cue urgent appointment and heart scan took place on 3rd January.    Showed a "level of concern" about the right side of his heart so further angiogram ordered - but how are you going to do this when he is allergic to the dye?   They were going to give him an injection to counteract the allergy priory to injecting the dye.   Fast forward to early March and he has an appointment for an angiogram.   Despite injecting him with an anti allergen prior to injecting him with the dye he had a very bad allergic reaction.  They discovered his allergy is to latex, not the dye.  Anyway upshot is that the right side of his heart is significantly worse than the left so they are now going to do a trans oesophagael angiogram (TOE) to have a closer look at the heart and decide what treatment to give - either a stent, a bypass or medication.   This has been going on since September and we are still awaiting a diagnosis and treatment plan.

User
Posted 22 March 2017 21:35:25(UTC)
So scores on the doors
PSA up from 3052 to 3473 I know dizzying heights but hey we have had worse.
ALP down from 355 to 244 again I know dizzying heights but hey it's gone down .

Calcium is low and T has been prescribed tablets plus vitamin D is also low if anyone knows if there is a conection I would be grateful to hear from you.

T is feeling ok and we are bumping along he has had a follow up appointment on his jaw and the healing has been slow as predicted so they won't attempt more treatment until his jaw is healed from the last onslaught but his eating has been better so ok he still can't chew nuts 🌰 but he has progressed massively in things he can eat so the 300 cans of soup have know been moved to the back of the cupboard . He has developed a taste for shell fish he couldn't chew a prawn 6 weeks ago so it's been a bit of a secret challenge to tackle a scallop 🤗
It has opened up a whole new recipe of turmeric based dishes 😛.

The heart issues are still ongoing and he is still experiencing tightenings and twinges next appointment is on the 30th for more tests I know it is just a coincidence but the pain he gets under his armpit I thought I was coming out in sympathy with him but I then realised it's my wire from my bra sticking in me. 😆
Lots of love to all.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 22 March 2017 22:13:21(UTC)

Another keyboard ruined by splurted tea.

Keep going, lovey xxx

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


Thanked 1 time
User
Posted 22 March 2017 22:22:12(UTC)

So good to hear you are still standing, scallop-tackling and making us splutter (mine was wine but I forgive you) in spite of the usual mad results Julie. PSA clearly has no meaning for Trevor so best we just concentrate on the bit that's coming down and give loud hoorahs for that. And another set of loud hoorahs for the fact that you don't have galloping armpit disease. (I've decided to go commando chestwise and give up on bras altogether - except for important occasions obviously - the Queen's garden party, the Oscars etc. Never found one that's even remotely comfortable...)

I think that you need Vitamin D in order to absorb Calcium but not sure quite what the link is. Maybe if the former is low it limits take-up of the latter so then you'd need a booster for both I guess?

Sorry to hear about the continued heart problems, and the slow recover from the horrendous teeth op. Extraordinary people the pair of you.

Keep on trucking.

Hugs

Eleanor

xxx

Thanked 1 time
User
Posted 23 March 2017 00:05:47(UTC)

I've just started on Vit D, large dosage for 3 months 3200, then down to 800. But I was advised this by my diabetic consultant not the onco. Not sure I've felt any difference yet. Another set of stats to conjure with, he is still there and eating scallops. What more could you want.

Thanked 1 time
User
Posted 23 March 2017 06:19:06(UTC)

Scallops, prawns, yum yum yum yum yum!

Now all it needs is a nice, well hopped, beer to wash them down. I recommend St Austell Brewery's Proper Job, 4 for £6 from Mr Tesco.

Thanked 1 time
User
Posted 23 March 2017 07:00:07(UTC)

Thanks for the encouraging update Julie.

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 23 March 2017 09:21:22(UTC)
Hi Julie,

I have slight bone thinning which I was told was as a result of the HT. My oncologist prescribed Adcal-D3 tablets. When I recently collected my tablets the pharmacist wanted to see me for a medication check, she said vitamin D picks up the calcium from your system (blood stream I think) and puts it into your bones.

Arthur

Thanked 2 times
User
Posted 13 April 2017 17:16:48(UTC)
Before I do our update we just had news from one of Trevor's cousins he has just been diagnosed with pca he is 55 years young , PSA was 4.6 and his Gleason is 7 his bone and ct are clear and he has been offered RP at Guys hospital . I have told him about the forum and I hope he decides to join us .

So oncology was last Mon .
Scores on the doors ALP down from 244-201 so good news there
Raduim number 5 has been completed with number 6 due beginning of May
Trevor did ask the Wiz if maybe a second round of Raduim treatment would be offered as he has done so well on it but sadly the computer says NO.
Not enough funding .

PSA with no surprises is up from 3473-4087 ouch.

That's the boring bit done and now to the important bit how is he feeling and the answer to that is pretty darn good. He has been gardening , putting up blinds and yes he is feeling and looking good. So I think the Raduim has been a success.
Still undergoing tests for the heart issues with appointment at the end of the month.
The teeth issue is also still ongoing and he has had more bone growing through where he had his extractions but at least he is managing to eat almost normally.

4 years in May to our Cancerversary and I know I say this every year but a huge thank you to everyone here for carrying me through my wobbly moments and boy there's been a few😛 You guys have been there through the good, the bad and the down right ugly moments of the last 4 years . A Huge THANKYOU. X

I am trying not to concentrate on the fact we have only one more Raduim treatment to go and to listen to my own advise of live in the moment and this moment is a good moment. 🤗
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 3 times
User
Posted 13 April 2017 17:22:59(UTC)

Your lovely positive post has cheered me up no end. Thank you XXX

We can't control the winds - but we can adjust our sails
User
Posted 13 April 2017 18:06:16(UTC)

Thats a lovely post Julie. Both so brave and an example to everyone on here. Thanks x




If life gives you lemons , then make lemonade
User
Posted 13 April 2017 18:19:12(UTC)

Good to get your positive take on both the good and not-so-good bits of news Julie, although I'm very sorry to hear that the Radium isn't a permanent option. Do hope that the positive effects continue. And a HUGE THANK YOU to you for all the support you offer to us all - through thick and thin. I'm still a bit of a newby but I'm sure I speak for the old hands too. You are an amazing and uplifting presence on this forum and have made a real difference to my ability to handle the pile of wombats' droppings that landed on our doorstep last July.

Rock on!

Hugs

Eleanor

xxx

 

User
Posted 13 April 2017 18:33:44(UTC)

Seems like pretty good news to me Julie and that makes me happy.

User
Posted 13 April 2017 19:39:33(UTC)

I am very happy and proud to be posting reply number 1001 - none of could have imagined when T was first diagnosed that he would still be here a thousand posts later, let alone that he would be gardening and stuff.

You are constantly on my mind, lovely lady xxx

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


User
Posted 13 April 2017 20:01:23(UTC)

Nice update Julie, glad to hear Trevor is out and about.

Hope to see you all soon

Si & the girls xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 13 April 2017 20:21:03(UTC)
Am I in room 1001 ?
😂😂😂😂😂😂
NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 April 2017 10:40:08(UTC)

Thank you for the update Julie.

It's so good that Trevor is well enough to do gardening. As for myself, I feel I can't do anything, and my wife calls me lazy - oh well.

Does the NHS explain to you and Trevor, why on earth the radium treatment cannot continue? Especially as it is making a difference to your dear wonderful man.

 

Frank.

 

 

User
Posted 17 April 2017 13:45:50(UTC)

Although I am not well enough to do the gardening to be honest I have never done the gardening so guess nothing has changed. I love the way Rdium 223 has helped but such a shame funding stops it continuing when it is proving helpful. I wonder how long its impact will last, has it slowed down activity for a while? Hope so. Sorry delay in replying as I think you know not been too well but always thinking of you. Now must make the gardener a cup of tea.

User
Posted 17 April 2017 13:51:19(UTC)

Sorry you've been under the weather Paul. Feel better soon.

It's a "Special" room 101 just for "Special" people !! and I mean that in it's nicest terms !!

We can't control the winds - but we can adjust our sails
User
Posted 17 April 2017 18:28:55(UTC)

Just found this report of a small (but apparently significant) trial of the re-use of R223. Conclusions were that a further 6 sessions were well tolerated, with no safety concerns, and were effective in further slowing down met progression (but not soft tissue progression of course). Don't know what the implications are in the UK but it has to be worth asking.

https://www.urotoday.com/conference-highlights/asco-gu-2016/asco-gu-2016-prostate-cancer/85810-asco-gu-2016-ra-223-retreatment-succeeds-in-mcrpc-session-highlights.html

Cheers

Eleanor

xx

User
Posted 17 April 2017 21:16:29(UTC)

Great update Julie. Great to hear things are going so well. Long may it continue

Bri xx

 
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