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Advanced prostat cancer part 2

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User
Posted 08 Jan 2015 at 22:29
Cracking day out, I can truly say Trevor is a chatter box but I think that is because the way to a man's heart is through his stomach and we went well armed. I reckon we could have two more for Newark which would be magic as Trevor is every bit the character match of Julie. I loved chatting with him about his life growing up in the old style south London when there was still a rag and bone man with a horse and cart and a yard just around the corner.

Julie I hope you and Trevor have a very good day at the oncologist tomorrow. By the way trains run every hour from Peterborough to Newark

Xxx

Mandy Mo

User
Posted 08 Jan 2015 at 22:36
Yep a second that lovely day

And now Trevor is on the carrot cake diet I expect the PSA to tumble

Good luck tomorrow

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 09 Jan 2015 at 09:03

Originally Posted by: Online Community Member
 I loved chatting with him about his life growing up in the old style south London when there was still a rag and bone man with a horse and cart and a yard just around the corner.

Born in Battersea. Remember the rag and bone men with their horses very well, and their goldfish in a plastic bag. Pestering our mother to find a few rags so we got a fish.

Happy days.

Glad you all had fun

We can't control the winds - but we can adjust our sails
User
Posted 09 Jan 2015 at 09:35

Julie and Trevor, the best of lick at the Oncologist today, hope it is good news!

Re rag and bone man, I just remember the Milk wagon and milk bottles with cardboard tops.

Hope that Trevor is well enough to make Newark.


Chris.

User
Posted 09 Jan 2015 at 11:38
Good luck for today

Carol x

User
Posted 09 Jan 2015 at 19:51
Sounds like you had a ball, and a good feast as well, perfect.

Hoping all went well today.

Hugs

Allison xxx

User
Posted 09 Jan 2015 at 23:19

How comes life never quite turns out how you expected, that's not always a bad thing especially if you are a pessimist like me because what I expected to happen today was sky high PSA the worst news possible on the scan results  and the hospital had reintroduced payment parking for cancer patients.

Well guess what the car park was still freehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

So here we go scores on the doors are

ALP within normal limits

PSA up to 218 from 180, although to some this would seem bad it is a much slower rise than last time, so stopping Bicalutamide didn't make the PSA drop but it has slowed down the rate that it was rising. 

Scan results are no change from May 2013 so no new mets , no better no worse. (I am taking that as a positive).

We made the decision with Dr Ts advice to postpone Abbi for another 4 weeks until Trevor is recovered properly from the Pneumonia , so that's where we are, still between a rock and hard place but at least with a plan.

Love to all.

BFN

Julie X

 

 

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Jan 2015 at 01:10

Well, well, well - the relief must be huge. I think you will sleep better tonight.

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

User
Posted 10 Jan 2015 at 10:10

Results look better than expected, GOOD.

Now ZAP that pneumonia..........

Love,
Chris.

User
Posted 10 Jan 2015 at 14:57

Good to hear the results were not what you feared Julie and free parking to boot :)

Take care
Bri x

User
Posted 10 Jan 2015 at 19:51
Well like you said Julie, better than expected and sometimes that's all we can ask for. Concentrate on Travor recovering from the pneumonia and the plan can be put into place. Hugs

Allison xxx

User
Posted 10 Jan 2015 at 20:01

Well not a bad return overall and something you can work with. As others have said get Trevor well and then back to the Abby tabs. And free parking, something is going right!

User
Posted 10 Jan 2015 at 21:11
see you both at the Newark do xxxxxxx????!!!!
User
Posted 10 Jan 2015 at 22:59

Julie

 

My PSA has risen to 1001 (like the carpet shampoo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif) but I feel just the same as when it was under 1. I get free parking at the hospital and they've arranged an MRI for me this Monday (efficient NHS or what?). I hope Trevor gets better - you just can't predict what's around the corner with this disease http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Edited by member 10 Jan 2015 at 23:00  | Reason: Not specified

Nil desperandum

Allister

User
Posted 10 Jan 2015 at 23:10

I was only wondering this afternoon Alister how you were doing, sorry to see the rise but glad that you are still feeling OK.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Jan 2015 at 10:18
Not to hijack the post, but I was wondering too Allister.

Glad you feel ok but so sorry about the flipping PSA rise. It does make my concerns about rising a couple of points seem ridiculous.

Hope you are both enjoying life to the full, as you usually do.

With love to you and Laura

Allison xx

User
Posted 11 Jan 2015 at 19:31

Hi Julie,

Not too bad at all i think,

The question is was it down to Trevor's green tea and turmeric or Mo carrot cake.

Any news on the puppy front, have they arrived

Si xx 

Don't deny the diagnosis; try to defy the verdict
User
Posted 11 Jan 2015 at 22:03

Mo's Carrot cake Si, after all it is healthyhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif. No puppies yet,I am laying bets for the 15th. She has gone to bed .

X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Jan 2015 at 22:53

Julie, More little ones due? More fur on Trevors' bed methinks!

Allison, puts a small rise into perspective.

Allister, sorry to see such a rise, but pleased you feel OKish.

Chris.

User
Posted 06 Feb 2015 at 23:16

Isn't life a funny old thing, just when you think you have got a handle on it and you are predicting what is coming next it goes and swithches on you. I didn't post yesterday because to be honest I couldn't have handled anyone saying good luck for our Onco visit today. What we were expecting was the predictable psa rise and the start onto Abbi tabs.

So when we walked in and Dr T was smiling we both thought either she needs a holiday or she has some weird kind of bedside manor going on. When she stood up and hugged Trevor we both looked at each other and in a silent agreement thought YEP  she's flipped.

Up shot is, she didn't believe it , we didn't believe it PSA 81. CAN YOU BELIEVE IT. Just a quick recap for anyone not following our story

13000 start line

all the way down to 15

Last psa back up to 280

Today 81, her first question was What Have You Been doing,  she said she had to look at the results over and over, she said rarely had she seen this with no extra drugs and no extra treatment.

Dr T took notes of everything Trevor eats and drinks on a blow by blow account. She has no answers , I questioned did she have the right notes ? were the test results right ? is she mentally stable ? Am I mentally stable ? ( don't answer that one) 

So as Allison would say Ill go to the foot of our stairs.

Review in 8 weeks , Abby tabs on the shelf for know and a very happy Trevor. He skipped backed down the hall way with me in hot pursuit.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Feb 2015 at 23:44

Forgot to add as he was skipping down the hallway he was singing.

Zippy doo dah Zippy de day

Zippy de doo dah WONDERFUL DAY

Plenty of Sunshine coming my way

Zippy de doo dah Wonderful DAY

X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Feb 2015 at 23:49

Good luck for tomorrow.

PS I wrote this yesterday.

Stay Calm And Carry On.
User
Posted 07 Feb 2015 at 00:26
What a wonderful result. Julie whatever you are doing to Trevor keep doing it, I am so pleased for you both you deserve it.

Roy

User
Posted 07 Feb 2015 at 02:09

Julie, I am so thrilled for you although a teeny smudge worried as well - have a lovely weekend xxx

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

User
Posted 07 Feb 2015 at 08:54

Great news Julie...well done Trevor..

Bri x

User
Posted 07 Feb 2015 at 09:14

Just the sort of news to wake up to, so so happy for you http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So is it the ride on mower ?

Mo carrot cake ?

Or living with 20+ dogs, whatever its great news.

Hope to see you soon

Si xxx

Girls said puppy updates please and more pictures xxx

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 Feb 2015 at 09:21
Amazing, wonderful, fantastic

How many more superlatives can I use? Oh and not only will I go to the foot of our stairs but I'll trot on down to the gate!

Couldn't be more delighted Julie, big hug for that amazing man of yours, and an even bigger one for you xxx

Love Allison xxx

User
Posted 07 Feb 2015 at 09:58
Sitting here singing Mr Louie Armstrong ...what a wonderful world. I am so happy(another more recent song title) hope this means you can get Trevor to Newark for a while so I can add him to my kissing list(who needs mistletoe) and of course give you a big whopper too.

Talking of which time to take the pie to SiNess xxx

Mandy Mo

User
Posted 07 Feb 2015 at 11:24

Bless you both. What wonderful news. So pleased for you

We can't control the winds - but we can adjust our sails
User
Posted 07 Feb 2015 at 11:37

Seriously, a brilliant result.

Hope you had a great celebration!

Paul

Stay Calm And Carry On.
User
Posted 07 Feb 2015 at 12:35

Dear Julie and Trevor,

What fabulous, incredible news!

The best news on here in a long time, and we so happy for you both.

It proves miracles CAN happen.

Trevor, keep on doing whatever it is you're doing to achieve such a remarkable result.

All the very best,


George & Lynn

B2PCa
User
Posted 07 Feb 2015 at 18:09

An amazing result,delighted for you.   Hope you have a wonderful weekend.  El.

User
Posted 07 Feb 2015 at 19:58

Yours is one of the stories I have followed for a while and I was so pleased to read your good news.

 

Best wishes and good luck

Andy

User
Posted 07 Feb 2015 at 21:05
Fantastic news for you both.

Just keep that humour going that we all know and love best medicine ever

Carol x

User
Posted 07 Feb 2015 at 22:22
After reading jamyjams such sad post I needed yours Trevor to remind me that there is some hope for Mets PCA people, thank you as it stopped me sobbing from the aforementioned.Kev

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 07 Feb 2015 at 23:05

Mandy told me this news today at Newark and it's such a great outcome. I wish you and Trevor continued good outcomes whatever caused it, hopefully the trend will continue. Missed you at Newark today but we celebrated your good news.

User
Posted 08 Feb 2015 at 03:53
Hi Julie,

Wow, That's wonderful news, I'm so pleased for the both of you.

Sorry, not to meet you today at Newark but hopefully will in the future.

Steve x

User
Posted 08 Feb 2015 at 10:14

Only just seen this, congratulations!
Long may it continue.

All the best

Kevin

User
Posted 09 Feb 2015 at 09:56

Brilliant news, so pleased for you !

 

Fiona. x

User
Posted 10 Feb 2015 at 23:51

Julie, now you have had a few days to celebrate, I am going to spoil the party a little by saying please don't forget that in some cases the PSA falling inexplicably is not a good sign - ref TopGun and Stan. The onco should know that sometimes as the PCa becomes more aggressive, it doesn't have enough energy to produce PSA any more.

Could you email the onco to ask whether she had considered this possibility and how else the disease might be measured? Is T due for a scan any time soon?

Maybe I shouldn't say anything but in both the cases above, the realisation that this was what had happened came too late. Sorry hon if you wish I had stayed quiet x

Edited by member 10 Feb 2015 at 23:52  | Reason: Not specified

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

User
Posted 11 Feb 2015 at 16:02

This thought had occurred to me Lyn in the middle of the night when all of the what ifs are going through your head this was one of them. Then in the morning when I see Trevor's face and how on a high he is at the moment could I burst his bubble. No I couldn't and honestly what would be the point, if it was a case that the pca is advancing so aggressively and this is why the psa has dropped in all truth with Trevor's other health problems our options with treatment's are so limited. There wouldn't be much that could be done if this is the case So I chose not to mention this to him or the Oncologist.

He had scans in Nov and there was no change on the scans, at the moment he is feeling well and looking well and his bubble is about the size of a hot air balloon.

When I think back to how he was at dx and how ill he was and I didn't think he would make more than a few weeks but here we are 21mths down the line there has been many downs and a few ups , this is an up moment.

BFN

Julie X

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Feb 2015 at 16:09

Julie

You have done exactly the right thing IMHO. My dad's PSA is coming down on HT, he is looking well, and the mental side of one's health is just as important as the physical. Keep him smiling!

Paul

Stay Calm And Carry On.
User
Posted 11 Feb 2015 at 16:21

Originally Posted by: Online Community Member

 this is an up moment.

Julie X 

And to be made the most of.  

What will be will still be, regardless of what anyone is told or is aware of.  There should be some light and hope.

atb

dave

 

User
Posted 11 Feb 2015 at 17:54
Julie SS

I am with you, enjoy this up time and make sure you spoil yourself and the boys while things are going well.

I am sure Lyn just wanted to flag it up with you in case you had not seen previous posts on this. The drop is not as dramatic as some I have heard about when it goes from hundreds or even thousands down to almost undetectable and very quicky. Trevor is well, happy and active so it might just be one of those respite moments we all wish for.

I will ring you over the weekend

xxx

Mo

User
Posted 11 Feb 2015 at 18:16

it's great that Trevor is feeling so well and you know him more than anyone Julie...you've supported him from day one and you will know what discussions are needed and more importantly when

However, I think Lyn was absolutely right to raise this as a possibility. This is what the forum is about. There would be no point if we all averted our eyes or didn't share our knowledge and awareness with each other even if that is sometimes hard to hear.

Take care

Bri x

User
Posted 11 Mar 2015 at 19:01

I am also an atheits from a far country, and I like how do you look at your life. Be good and get well. Good Luck.

User
Posted 11 Mar 2015 at 19:52

Who Dat knocking on my door.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Mar 2015 at 20:27

I've been wondering that Julie

Bri x

User
Posted 11 Mar 2015 at 20:36
Me too guys, have a theory

xx

Mo

User
Posted 11 Mar 2015 at 20:41

Definitely

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

 
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