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Advanced prostat cancer part 2

User
Posted 25 Jan 2016 at 20:58

Sorry to read this Julie. X

We can't control the winds - but we can adjust our sails
User
Posted 25 Jan 2016 at 21:22
Julie

Lyn makes a great point (as always), definately one to discuss with the Onco if things go the way you foresee. It's a possible plan B, wouldn't that be something?

Love and hugs

Allison xxx

User
Posted 25 Jan 2016 at 21:24

Could any of these be a Plan B:

Stilboestrol (oestrogen)?

Radium 223?

Immunotherapy/Olaparib/VT464/other trials?

User
Posted 25 Jan 2016 at 21:31

Julie, another rise, s**t! Great they have kept the Abby going for now, knee jerk reaction seems to be to stop so they must think it's still doing something. I hope they have a positive plan when you go in four weeks it may be Trevor's general good health might bring other options? Chemo, radium 223. Anyway thinking of you as always. My turn tomorrow time for enzo I think!

User
Posted 26 Jan 2016 at 08:41

Hi Julie

I was so sorry to read your last post. Although the numbers are very different we seem to be in similar situations. But as someone else has already suggested Radium could be a possible option? The only reason my OH can't have this is because of his anaemia.

I am thinking of you both and hope you have a dinghy and a life vest in your boat! 

Rosy

User
Posted 26 Jan 2016 at 10:49

Hello Julie

I still feel a little bit out of the big boys club , and never really know what to post to you without sounding useless. But I do read your every post and think of how worrying things must be for you . I know how WE are worrying but we are a long way behind you ( I think anyway ). Whatever it is you are both doing , you are both doing it well in your own ways . I admire Trevors courage and respect his silence if that's how he deals with it . And you seem to be his perfect mate dealing with it in your way . Fingers always crossed for you

Chris x

PS Because I'm "shy" I tried to PM this but you are so super popular your inbox has the bomb-squad stood by it in huge suits trying to defuse it . Must be the Avatar ( and of course your wit )

User
Posted 26 Jan 2016 at 16:25
Hi Julie

Your comment, "My thinking.....".Too much thinking is not good for the soul but I know we all have to go through this process and often think of worst case scenario first.

I'm hoping, as others above have said, that chemo may be a viable option for Trevor.

Please look after yourself, take care.

Lesley x

User
Posted 27 Jan 2016 at 18:28
Bloody hell Julie are you sure Trevor is still taking the turmeric

I am starting to love your onco really on the ball

Now if you think about it Trevor is king of the psa he can churn it out for fun so if you look at his increase it would be like mine going up to 0.3 in percentage terms.

Really hoping to pop down to see you soon to introduce Trevor to the fosters diet

Of course there will be a book to follow

Love to you all from all of us xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 30 Jan 2016 at 22:41
Love you guys thank you for all replies where would I be without you.

The first thing that I would like to bring up is.

The Case of Missing Posts on my thread some one posted under noonespecial posted to me, I read it and then when I went back over it the post had mysteriously dissapeared I thought Ok maybe they had deleted it. Not uncommon then my lovely SS posted a comment to which I replied on FB so we both know that it had been read and then it somehow went missing from my thread, so know two comments deleted ( weird ) so Sadie if you are reading this and I will be sending a seperate message to you where are these comments, the thing that is realy concerning me is , is this happening on a regular basis ( I am not worried for myself) but are newbies not getting replies or think they are not getting replies because of a glitch in the system. This would be such a major problem. If any one else has noticed this please comment. SS if you are reading could you please add a comment.Both of these posts where made on the 25/1/16.

Secondly radium 223 thank you to everyone that has mentioned this I have been beavering away researching this and it was looking favourable until I have just seen that on the 27/1/16 it has been withdrawn for men that have not had chemo😔 . Have I got this wrong?

If any one has some info I would be grateful to hear it.

Again love you all so much my shoulders to lean on.

BFN

Julie X

Edited by member 30 Jan 2016 at 23:24  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Jan 2016 at 23:02
Julie

my SS

I posted a reply to your recent update at sometime after 10pm on that day. I said something along the lines of FFS only 3 wheels on your wagon, you must be driving Del Boy's robin. A bit about the statistical changes in Ts PSA and nothing at all that might prompt a moderator withdrawal. I did not delete that post as far as I am aware but it got deleted. I also saw the post from noonespecial which also disappeared.

I know this has worried you so I hope you get an answer from Sadie as to what has happened.

xxxx

Mo

User
Posted 30 Jan 2016 at 23:22

Hmmm, I saw the reply from no-one special as well.

In my experience, if the moderators delete a post they let you know what you did that was so naughty so I think it unlikely that this is the explanation.

I thought that Mark had radium223 from the Wiz without doing chemo but I could be wrong - will try to check back

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

User
Posted 30 Jan 2016 at 23:34
Thanks lyn glad that you also saw it and SS thanks also for confirming your post as well ( just to prove that I read it before it mysteriously dissapeared yes please send the cuddle blanket😍. The moderators wouldn't remove 2 posts for no reason and neither of them contained anything that was worthy of being removed. Of course know we have Rosmary and Thyme on the case I am sure it will get sorted .

I just read this today Lyn, apparently a new ruling from NICE from the 27th of this month.😝

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Jan 2016 at 23:44

I just checked - Mark had chemo and then tried Cabz not radium :-( It has also dawned on me that your Wiz may not be the same person as his Wiz ... all these years I have just assumed you were under the same person!

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

User
Posted 31 Jan 2016 at 00:29
Julie

Mystery over my fault pressed delete rather than save when edited

Sorry don't know what happened to Mo's post

User
Posted 31 Jan 2016 at 17:32
Ah

the plot doesn't thicken then and Rosemary and Thyme can stand down ....

Still not totally sure what happened to my post but it didn't cause any harm, and only two very observant people saw that for the first time in over 2 years it looked as though I had missed a post by my SS. Not a chance!

Anyway I am going to fess up that, on reflection, I did partake of a few glasses of wine that evening and may have returned to the post and may possibly, just by a completely outside chance under the influence of 2 glasses (which was 2 more than I had drunk all year) have pressed the delete button in error.

Noonespecial, I think a few of us who remain close are just a bit concerned with your new forum name. You are special and you are someone , in both instances very much so to all of us. Have no fears we all respect your right to remain anonymous. So if anyone else out there thinks they know then just keep that intuitive guess as is.

xxx

Mo

User
Posted 31 Jan 2016 at 17:51
OK detective Mo

What gave it away

Carol

Was it the bad grammar

Edited by member 31 Jan 2016 at 18:01  | Reason: Not specified

User
Posted 31 Jan 2016 at 18:37
someone special

not at all the perceptive one is my SS. I'm the clumsy one that says all the most inappropriate things. My epitaph will read "she meant well"

xx

Mo

User
Posted 31 Jan 2016 at 20:01

http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif i was right http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Don't deny the diagnosis; try to defy the verdict
User
Posted 31 Jan 2016 at 20:03
Si

remind me never to play you at poker!

xx

Mo

User
Posted 31 Jan 2016 at 22:23

Carol! Why did you choose such a name???? You are one of the kindest and most empathetic posters on here.

Please change your name back, it makes me feel sad :-(

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

User
Posted 01 Feb 2016 at 00:39
Ah Ha so mystery solved and I didn't even have to phone Hercule Poirot🤓, still strange they both dissapeared on the same night though and within an hour of each other. Carol I have to agree with Lyn you are certainly not noonespecial, it is lovely to hear from you I hope that you are OK?

Lyn 2 Wizards that can't be so, I think that one of them is an IMPOSTER. 🤔

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Feb 2016 at 00:20
So here we go Wiz visit tomorrow, bone scan completed last week we are just hoping that the results will be back ready for our appointment in the morning. MRI is on the 28th so we wil have to wait for those results.

So ABbi to continue ? or ABbi to stop it is like the sword of Damocles hanging over our heads.

I say we on this ,Trevor remains non comital , non talkative, and honestly still can't cope with any discussion about his disease. I get it I so totally understand , although it took a long time for me to accept where he is coming from. We are all differnt beings and how we cope is unique.

It is his disease and he owns it , where does that leave me well that is a whole different story. That is where you guys come in. 😥

Wish us luck and keep fingers crossed, who knows the bone scans may show no progression and we will hang on in there by a wing and a prayer, we have skidded around so many corners before. It is just another corner right?.

Life with PCa it sure is a roller coaster at the moment we are on a dip (for those that remember the rocky road) I feel we have a few boulders coming up. It would seem that radium 223 is not going to be on offer but I will update on that.

I

Our DIY goes on abated, Trevor is too ill and I am too old but we are trying the best we can, to be honest we both know that there is a sense of urgency to get things sorted . Where is DIY SOS when you need them .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Feb 2016 at 02:12
Hi Julie,

I really hope things go well at your appointment. You both deserve some better news.

I think I share your anxiety tonight as I have my cardiac review in the morning. I've been having niggling chest pains all this evening which I'm sure reflect my concerns about everything rather than anything too serious. My GTN spray has been well used.

I hope things settle down for you both in the coming weeks and you can enjoy life. Don't worry about the DIY, in the scheme of things, it's not that important.

Thanks for being an inspiration to many, myself included.

Steve x

User
Posted 23 Feb 2016 at 02:41

Wishing you all the very best for tomorrow. We too are on abi with rising psa levels and my OH doesn't communicate about his illness or how he feels so I really do empathise with you.

I will be thinking of you

Rosy

User
Posted 23 Feb 2016 at 04:20
SS you know I am thinking of you. I will be there to give you a great big hug next Thursday.

I hope that everything goes well later today, fingers crossed.

I will call you later

Xxxxxx

Mo

User
Posted 23 Feb 2016 at 06:49

Julie/Trevor....I hope everything goes well at your appointment today.
You are right about us all being different but we are all here for you both

Bri xx

User
Posted 23 Feb 2016 at 06:58

We are both thinking of you today and mostly that the scan shows no development. Fingers crossed
Chris xx

User
Posted 23 Feb 2016 at 07:13

Good luck Julie/Trevor for today.
i wish you the best results.

Paul

User
Posted 23 Feb 2016 at 07:59
To you both,

I really hope all goes well for you.

Shall be thinking of you.

John

User
Posted 23 Feb 2016 at 08:12

add my twopenneth also hope the results are what you wish for, made me laugh with the DIY SOS bit

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 23 Feb 2016 at 08:24
Will be thinking of you today Julie

Really hoping for good news

Si xxx

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 Feb 2016 at 09:32

Fingers, toes, eyes, Is, Ts, the lot - all crossed in the hope that tomorrow's results are good. I don't half look odd and I can't see where I'm going !!!!!

I do understand about the DIY side of things.
I've always done them and John has only got involved if something was too physically heavy for me.
Those days have now arrived and he's been told (no discussion this time!) that we WILL be decorating this year and that I will need help as I know that this is going to be probably the last time I will manage it. He does at least accept that age isn't on our side, let alone physical limitations. We don't however have your problems and I know that once you get that list of jobs in your head it's not easy to let go of them, especially if you think they are time limited

Having said all that Julie, the house isn't likely to fall down round your ears just yet (I hope) so concentrate on the really important stuff (and by the way, nothing to stop you approaching the DIY SOS team and asking. You never know)

We can't control the winds - but we can adjust our sails
User
Posted 23 Feb 2016 at 09:35

Thinking of you, know the feeling about being too old to do stuff round the house! Love,

 

Fiona. xx

User
Posted 23 Feb 2016 at 19:12
Hi Julie

I popped on and just saw this, Eeek, the waiting around for results is rubbish isn't it? I often go into our appointments with bated breath as we don't get to know anything beforehand. Fingers, toes and everything north all crossed for you both. Hugs too.

Lots of love

Allison xxx

User
Posted 23 Feb 2016 at 23:21

Thinking about you and wondering how you got on x

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

User
Posted 24 Feb 2016 at 09:13
So not good news but to be honest it was what I expected there is significant progression in the bones the Wiz showed me the scans (Trevor didn't want to look) . Trevor had a few tears and then quickly pulled himself back together. To say everybody's mood was somber would be an understatement.

All of his torso on the scan is affected, so numerous new sights and worsening of the original ones.

No plan B for the moment she wants to wait for the results of the CT scan (this Sunday) next visit is 21st March and she will decide what to do then. We carry on with Abbi until then , but we all agreed that it is not working .

She wouldn't comment on Raduim 223 she said she wants the results of Sunday's scan first.

Bugger this tishy disease I would like to say worse but I will probably be moderated.

That sick feeling in the pit of my stomach is back with a vengeance.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Feb 2016 at 09:23
Hi julie

Cant say owt but sending a BIG HUG

good job i check my spelling as it was nearly a BUG HUG

Regards

Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 24 Feb 2016 at 09:24
So sorry to hear this Julie. It's still so hard even if it's what you expected. I beieve the Radium is for if there is no visceral spread so it might be a possibility if the MRI scan results are ok.

Big hugs to you both

Rosy

User
Posted 24 Feb 2016 at 09:25

Julie
I'm so so sorry for you both. That news is awful for you. I detest that sick tummy feeling and hope it clears sooner rather than later. Best luck with the scan.
Chris :-((

User
Posted 24 Feb 2016 at 10:16
Oh love, you are so brave, it's time for the cuddle blanket to come your way.

It must be so hard for you to just go home and not be able to talk about it. I'm happy to have a chat if you need me, I'll pm you on Facebook.

Lots of love and hugs

Allison xxx

User
Posted 24 Feb 2016 at 11:17

Thinking of you both .....dealing so bravely with this s**t disease...

Luther x

User
Posted 24 Feb 2016 at 11:27

XXXXXXXXX From me Julie XXXXXXXXX as I don't know what to say

We can't control the winds - but we can adjust our sails
User
Posted 24 Feb 2016 at 12:26
So sorry to hear this. Thinking of you both. My OH has just started Radium 223 so i hope this is an option for you.

Glen

User
Posted 24 Feb 2016 at 12:38

Oh b***er, as they say. I think an earlier post is correct about radium 223. Let's hope the ct scan is clear. My oncologist team in Sheffield did some of the trials and for active bone mets it is supposed to be effective. Thinking of you and Trevor at this worrying time!

User
Posted 24 Feb 2016 at 13:32

I'm so sorry to hear this news, Julie. 

Like others here, I wish I could say something that would help but I know that would be difficult.  We are all here for you both as you have been for many others here.

It's so unfair that the worst things always seem to happen to the nicest people.  

Sending my love to you both at this difficult time.

Steve xx

 

 

 

 

User
Posted 24 Feb 2016 at 13:47
J&T

Probably like many not sure what to say, but we are thinking of you at such a tough time.

Thanks Chris

User
Posted 24 Feb 2016 at 17:50
Julie my SS

Oh FFS I remember that awful feeling in my stomach the nausea too. Rather than try to say something comforting here I will call you and chat. Of course I am coming there next Thursday so I can give you both the biggest hugs.

xxxxxxx

Mo

User
Posted 24 Feb 2016 at 17:53

Oh Julie. ..I'm not sure what to say but obviously everything crossed that the scan on Sunday is ok.

I am thinking of both of you...I hope you take up the offer to chat with others 9n here or fb

Bri xx

User
Posted 24 Feb 2016 at 21:56
Hi Julie

I am so sorry to read your latest post. I am so hoping radium could be an option for Trevor. Sending you a big hug.

Take care

Lesley xx

User
Posted 24 Feb 2016 at 23:54

Oh my - these are going to be a tough few days. It looks bad Julie but really this is a small setback when you compare it to the blue light times. You have done brilliantly so far and you have already survived bigger knocks than this so you will find the strength to do it again, for T and for the boys.

The only thing we can do is hold you up and keep reminding you how important it is that you get some respite sometimes - a break from the constant state of high alert.

As a starter, I have posted a picture on your FB - your T should have been a premier league footballer apparently!

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

 
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