Advanced prostat cancer part 2

User

Posted 06 Jan 2016 at 14:54

One thing is for sure a 3 wheeler is better than no wheels, Del Boy would be in a right old mess if he had to rely on 4 !

Your spirit after more than 3 long years is still amazing and you know how much I and others respect you for that.

Keep on keeping on as we used to say

xxx

User

Posted 06 Jan 2016 at 19:20

Hi Julie,

You always make me smile http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So what has gone wrong with the Abbi, i found a can of Fosters per tablet really boosted the treatment and also turned my cancer in to a raving drunk http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

I guess Trevor was taking them with turmeric http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif so wrong.

So whats the plan next ??

Thinking of you

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 06 Jan 2016 at 20:00

Not sure what your post is signifying.malthough that sounds like big rise it's over five months and your figures are high so not doubling. Or have they stopped abby because they think it has stopped working. I understand all this as I limp towards four years and another change. Your wheels my circles, I know the concept. Trevor is lucky to have you fighting his corner, this alone will extend his time. I like being on my own (mostly) not putting a partner through all this but it can be a bit frightening. Your humour in the face of adversity I love. Keep those wheels turning and I will keep the circles in the air!

User

Posted 06 Jan 2016 at 20:50

Paul, you are such a kind and true person, never be frightened of coping without a partner. If I ever thought you needed me, your family would have to take out a restraining order to keep me away.

Julie, I wish I knew the tune, just so I could hum along with you

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

User

Posted 06 Jan 2016 at 22:18

Julie

I understand your fear, but I truly love your humour in the face of adversity. I remember 3 wheels on my wagon and sang along with you.

Thinking of you, as always

Love Allison xxx

User

Posted 06 Jan 2016 at 23:02

Originally Posted by: Online Community Member

Paul, you are such a kind and true person, never be frightened of coping without a partner. If I ever thought you needed me, your family would have to take out a restraining order to keep me away.

Julie, I wish I knew the tune, just so I could hum along with you

Paul I am with Lyn on this one (again!!)

User

Posted 07 Jan 2016 at 05:59

https://www.youtube.com/watch?v=RghKdGn8h5A

copy this lynne and hum along

run long and prosper

'pooh how do you spell love'

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

User

Posted 25 Jan 2016 at 19:22

Wiz visit today and no surprise PSA is up again. 691 so an increase in 125 from 4 weeks ago, to say we limped out of the appointment with a bike pump and a free check up at quick Fit is probably a very apt description (see previous comment about 3 wheels on our wagon)

New scans ordered before next visit in 4 weeks until then we continue on with Abiraterone.

My thinking is if the scans show progression then Abbi will be abandoned and not having a plan B is pretty scary , I just heard Trevor on the phone saying that it was a slight increase we both handle this in such different ways , he will be down for a few days (but never admit it) and certainly never talk about it, if he opened up and talked about it then he would have to face it and that's what he can't do.

So we soldier on and if all of the wheels fall of our wagon well then I will just have to get the boat back out again, mind you I think we only have 1 oar.🚤

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Jan 2016 at 20:40

Originally Posted by: Online Community Member

New scans ordered before next visit in 4 weeks until then we continue on with Abiraterone.

My thinking is if the scans show progression then Abbi will be abandoned

I fear this may well be so. At my last meeting with my Onco I commented on the fact that it was now 12 months since I was last scanned. Her response was "you're still feeling good therefore I don't want to scan you because if I did and it shows progression then I have to stop your Enzo".

BTW did you see my post of 9/1/16 here:

http://community.prostatecanceruk.org/posts/t10422p7-Ever-Decreasing-Circles-part-three?=#post139951

User

Posted 25 Jan 2016 at 20:53

I am so, so sorry Julie.

I wonder if, since his other medical issues have stabilised so much over the last 12 months, the Wiz might take a different view about chemo now?

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

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

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