Advanced prostat cancer part 2

User

Posted 27 Dec 2016 at 18:19

What can I say that has not already been said, love to you and Trevor. Thinking of you both constantly. Hug often, 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 27 Dec 2016 at 18:56

Lighting a candle, sending Spartacus' strength and wishing you both well.

Bazza

User

Posted 29 Dec 2016 at 00:36

Well what's happening in our household in True British Style we have managed to pull ourselves together hitch up our britches and carry on. There really was only two alternatives pull the quilt over our heads in self pity or get on with life.

So although unspoken it was a kind of let's open the sweetie tins and move on. So the after eight mints and the cadburys Rosie's have taken a bit of a bashing but hey that's Xmas isn't it.

So things are a little bit more like normal in as much as we are ignoring the elephant in the room and oh boy is that elephant huge but Xmas is even huger when you have children.

I say things are more like normal well I suppose for us our emergency trip to the vet today is pretty normal . It would be crazy for most other families but for us just an ordinary day.

I have to back track on this story so firstly to set the scene I am a very well respected Breeder of Cocker Spaniels (as some of you will know) I don't agree with all of these cross breeds , Cocker Jacks, Cocker Poos, and all of the other weirdly named cross breeds out there that people charge huge amounts of money for what is essentially a mongrel.

So enter Tulip our Bull Terrier who had her season about 6 weeks ago and I have noticed over the last few weeks that she has been gaining weight and also been suspiciously subdued .

So the thought that I might be the first person ever to produce the very first out cross between a Bull Terrier and a Cocker Spaniel was not only terrifying but would have been so embarrassing.😱

So emergency scan results are we are not , I say not expecting a litter of BULL COCKS and it is probably a phantom pregnancy . (Pheeewwww)

My vet didn't charge me for the scan he was doubled up laughing when he said what would you call them after I told him BULL COCKS he said I should be charging him for the laugh. Can you imagine the que of plumbers trying to but them😆

So just a day in the life of us, it is more like Monty Python our lives.

I always cook a roast lamb dinner with all of the trimmings on New Years Day followed by charades so Trevor is not up for charades so I am going to order board games instead . This will be our next big hurdle.

Wishing Xmas and new year away is so hard but I always think in our hardest times there are children out there suffering from cancer , children who have been in hospital over the Xmas , there are many who were not at home to open the Rosie's tin.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 29 Dec 2016 at 09:18

Glad to hear you were able to make the most of your Christmas, even though you are having to adjust your activities and your expectations. It's all you can do, and it's part of a long, painful process. In a way, New Year is harder to face, with all that looking back and looking forward, but then again, it's an occasion that's easier to ignore. Hope Trevor is still enjoying his meals, at least that's something you can take pleasure in together.

Soon there will be more daylight and brightness to cheer us all.

(((Big New Year hug)))

Marje

User

Posted 29 Dec 2016 at 09:19

Thanks for the laugh Julie,

I can't picture what a CockerBull would have looked like. Since most folk seem to buy the cross breeds on the basis of cuteness you may well have been left with a full litter (unless you hyped it up some way and made it the in thing for acting as a plumber's mate!!

I don't know where you all get your strength from, can't be the Roses as that's a Christmas indulgence. Whatever it is it's a shame it can't be bottled.

Now in that case they would fly off the shelves.

Keep smiling, hard as it is. XXXXXX

We can't control the winds - but we can adjust our sails

User

Posted 29 Dec 2016 at 21:35

Hi Julie

Cocker bulls or bull Cocks!! Lol. It's lovely to hear you've managed to lift your spirits again and back to having "normal" days. It's a tough old journey which is impossible to always stay on an even keel. I think it's good to let yourselves crash and let all that pent up emotion out. Then you can refocus your energies and move on again.

Enjoy your roast lamb dinner with all the trimmings!

Take care

Lesley xx

User

Posted 03 Jan 2017 at 18:26

I love you, crazy lady - I can't bear all the insensitive sods that have sent me Christmas cards with comments like 'hope this is your best one yet' or 'have a great new year' .... wtf? So I am not going to wish you a happy new year, simply that whatever 2017 brings you, we will be here xxx

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

User

Posted 03 Jan 2017 at 22:25

I Love you to Lyn some one who actually gets it . I understand that most people don't know what to say but so many have wished us a merry Christmas and a happy new year . I find it unbelievable and so totatally unthinking. In fact there has been no thought at all.

In fact I may just go into designer cards for next year your WTF would be my inspiration.

The truth I can handle , some one who hand picked me a WTF card would make me smile.

So New Year's Day I bottled it guys I chickened out , I did cook the whole lamb roast but I didn't set the table or make any reference to Happy New Year . It was. A kinda cook , eat and run . A bit like the film chicken run but with lamb.

Trevor couldn't actually eat the lamb or the roast potatoes or the Yorkshire puds so it was a good job I went all out with the side dishes . His mouth is so sore with the extra bone growth that eating anything that requires any effort to chew is impossible.

New Years Eve his face swelled up with abscesses so I rang 111 and managed to get an emergency appointment for him to see a dr at our local small hospital. He was prescribed antibiotics. Upshot is as of today his face is still so swollen that I rang the gp again to say the antibiotics aren't working . They refused to see him and said he had to see his dentist.

So he has had to get dressed and drive himself to the dentist who has given him different antibiotics.

Still no contact from McMillan

Happy 2017

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Jan 2017 at 03:40

Here I am awake at 03.30 feeling pretty p****d off about something which, in the wider scheme of life is annoying, aggravating and downright unfair, and for something to do whilst my cocoa cools I come on here and read your message.

Your life puts my whines to shame.

Yes, I can tackle big business and I will, but really does it matter compared to what you are going through.

As usual you are in my thoughts Julie and Trevor. I won't wish you a Happy New Year either, since it can't be - won't be.

I hope I'll be allowed to wish you strength though and a measure of calm acceptance.

With love and heartfelt best wishes to you all

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 14 Jan 2017 at 18:15

I am going to make this a very quick update before the server goes down again 😄

So after the emotional and physical dramas over the last few weeks what can I say this man of mine has rallied beyond belief, the slow release morphine has enabled him to be back up on his feet, driving and he has just been outside lighting a bonfire.

I have said this many times on here he is obviously not human and quite how he does it I will never know.

Second Raduim was last Tue (drove himself there and back)

I can now see our 4 year Canservasory in May in sight ok he won't be attempting Britains Strongest man or Running a Marothon any time soon but for know the Dingy is patched and we are rowing towards the shore.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Jan 2017 at 18:18

Wonderful - you, him and this news.

Keep on rocking and rowing Julie.

Love

Eleanor xxx

User

Posted 14 Jan 2017 at 18:58

Damn it , servers gone down again .........
Hang on , there you are , patched dinghy and all xxx

User

Posted 14 Jan 2017 at 19:09

Brilliant update :-) x

User

Posted 14 Jan 2017 at 20:35

Absolutely 'Over the moon' to read this amazing update, Julie.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

What a guy Trevor is!! I'm so pleased for you both.

George x

B2PCa

User

Posted 14 Jan 2017 at 20:36

Originally Posted by: Online Community Member

The boy has Vulcan blood in his veins. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Live long and prosper.

Spock (alias ColU_FC)

User

Posted 14 Jan 2017 at 21:15

"Oar"some Julie.

Much love.

Bazza

User

Posted 14 Jan 2017 at 21:39

Julie

Great too hear things are looking better, keep going girl.

Thanks Chris

User

Posted 14 Jan 2017 at 21:43

Guys you all bring tears to my eyes and make me feel so humble . Thank You X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Jan 2017 at 22:54

Yay!! Julie and Trevor, so much love on here for you guys ❤️

User

Posted 14 Jan 2017 at 23:42

Brilliant News, Trevor and Julie.

I'm so pleased to read your Good News. Long may it continue.

Steve xx

User

Posted 14 Jan 2017 at 23:54

So glad to hear this news. Wow - this roller coaster of yours certainly is a big one!

Long may your uphill stretch continue...

User

Posted 15 Jan 2017 at 00:02

Julie this is such fabulous news to hear, so so pleased for you!!

Bring on the may birthday for you both!

Lesley xx

User

Posted 15 Jan 2017 at 00:54

Right now I can't think of anything that could make me happier than reading your update xxx

PS Don't let him near the strap-on though

Edited by member 15 Jan 2017 at 00:55 | Reason: Not specified

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

User

Posted 15 Jan 2017 at 09:28

I cannot begin to imagine what the ups and downs must be like for you because every time I see that you have posted I become anxious on your behalf before I open it.

Conversely, every time I read one of you miraculous upbeat posts I feel huge relief for you all and have a huge smile.

I bet mine's not a big as yours though eh!!

What a man. What a family!!

We can't control the winds - but we can adjust our sails

User

Posted 15 Jan 2017 at 14:22

Brilliant update Julie

He truly is remarkable and so are you

Bri xx

User

Posted 15 Jan 2017 at 14:44

Hi Julie,

What super news about Trevor!

Alan

User

Posted 15 Jan 2017 at 15:49

Originally Posted by: Online Community Member

PS Don't let him near the strap-on though

I think we need to introduce the equivalent of a spoiler alert for your posts Lyn. Something along the lines of:

"Before reading further, please do not fill your mouth with coffee, tea, beer, any other liquid or food."

David

PS. I'm still cleaning up the mess I've made of my laptop and my kacks.

User

Posted 15 Jan 2017 at 16:58

Ooooops

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

User

Posted 15 Jan 2017 at 18:49

Not sure where my last post went. Brilliant news Julie, I'm so pleased for you. Lyn, I'm still giggling from your post, and I was drinking tea.... my jersey is now mopped clean humour is so important and happily acceptable here, thankfully 😅
Keep that boat afloat Julie, I'll be along with the spare puncture outfit soon.
What's up with the bl##dy site !!

Leila x

Edited by member 15 Jan 2017 at 18:50 | Reason: Not specified

User

Posted 15 Jan 2017 at 18:57

Hi Julie

So happy to read this update is it really nearly four years

What fun we have had. So heres to the next four years that's if I can really be bothered 😀

Love to the family

Si xx

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

User

Posted 15 Jan 2017 at 18:57

Just to be clear, the strap-on is actually a ride-on mower which Trevor doesn't use very often. I wouldn't like anyone to get the wrong idea about him :-/

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

User

Posted 15 Jan 2017 at 19:01

Too late for explanations Lyn - the image is firmly (and disturbingly) fixed in my brain!

User

Posted 15 Jan 2017 at 19:04

Ahhhh, mow mow not dildo.

User

Posted 16 Jan 2017 at 19:29

I am so glad that Lyn explained that so elequently it has been for those newish to the forum a long standing joke about our ride on. The avatar is Trevor sitting on the ride on but by the shape of his hands he could well be sitting on a strap on. 😂😂😂😂😂😂😂😂😂😂😂😂

Love you all

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Jan 2017 at 19:38

If any of you techno guys can find it there is a post about the ride on , on Si supermans thread it was yonks ago but I think it would lift everyone's spirit if some one could repost it here. I am throwing the gauntlet out there.

BFN

Julie X

Ps it was about it not fitting through his letter box

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Jan 2017 at 20:32

Would this be it?

http://community.prostatecanceruk.org/posts/t9698p6-Simon-Story-Chapter-2?=#post127168

User

Posted 16 Jan 2017 at 21:43

What a diamond co. ❤❤thank you.

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Jan 2017 at 22:53

Hi Julie, back from a weekend away and so good to hear the turn in fortunes again. The rollercoaster goes on. 4 years for you and Si, five years for me, we keep this forum full of good news!

User

Posted 16 Jan 2017 at 23:02

Fantastic news Julie I am so happy for you. The radium is working its magic along with the Turmeric he certainly is superman

Molly xxx

Edited by member 16 Jan 2017 at 23:03 | Reason: Not specified

User

Posted 23 Jan 2017 at 19:29

Oncology visit today and Cardiology on Wed so a week ful of Ologies .

We still hadn't heard anything about Trevor's appointment to try and sort out the teeth situation so the Wiz chased it up today and the appointment is 16/2/17'so hopefully that problem will improve. The antibiotics have been ongoing to help with the abscess as soon as he finnishes the course another one erupts, he describes it like having his teeth in a vice were the bone is growing between them. I am running out of ideas for soft food and I know that because his diet has been dictated by what he can eat and not what he would like to it this has contributed to his weight loss he is down from 93kg to 85kg .

So scores on the doors, (I am just going to backtrack)

28/11/-PSA 3582

22/12/16- PSA 5331----ALP 297

30/12/16- PSA 3692----ALP 383

18/01/17- PSA. 3188----ALP 494

So PSA dropping ( yes Lyn I hear those little grey cells)

ALP rising ( still hearing those grey cells Lyn)

Thoughts on a postcard please.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jan 2017 at 19:44

I am not sure I can offer much useful advice on the scores. I know ALT is also affected by any bone trauma and so those teeth issues may be contributing to that. PSA is coming down so maybe the Radium is continuing to do something. The weight loss is quite fast but eating all soft food is probably not helping. If he can't chew anything have you tried high protein drinks, rice puds and stuff like that. One of Mick's favourites was mashed potato and gravy ...lots of it.

I know you have had an awful time since before Christmas but if Trevor is still active, driving and not in pain then that is a major blessing.

Thinking of you as always

xxx

User

Posted 23 Jan 2017 at 19:46

I ain't panicking yet - PSA drop after Radium is exactly what you would hope to see and since Zometa can lead to a drop in ALP, it seems sensible that stopping Zometa may lead to an increase?

The scores on your T's doors are slightly unreliable anyway so best to go with how he is in himself x

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

User

Posted 23 Jan 2017 at 21:20

My two favourite lady's 😍

Thank you for such a fast response correct me if I am wrong but I thought that the Raduim would have no affect on the PSA ? As it is only targeting the bone or is the bone mestasis also giving of PSA? Everything I have read says that PSA is of no consequence when on Raduim .

And Alp is rising so showing a progression in bone .

HB was higher than it has been for a while at 9.8 and was at 9

He has been on Abbiraterone for over a year in fact it has been 15 months and there was some very small reductions in PSA in the beginning but the overall trend has been upwards.

I am not sure what to make of the results it seems conflicting to me .

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jan 2017 at 21:59

Hi Julie

I've been doing some research on Radium 223 since my OH will be starting it soon and you are right - it doesn't target the PSA. Nonetheless some men in some trials did see lower levels of PSA (and some had a a sudden rise). All seems a bit random really! And when you factor in Trevor's unique titanium and tumeric constitution best guess would probably be that no-one will have the foggiest idea. Hope he continues to be a medical phenomenon for the foreseeable...

Love

Eleanor

User

Posted 23 Jan 2017 at 22:12

Maybe it is just flawed theory in my head but the ALP can drop on Zometa so it seems obvious that when the Zometa stops, the ALP might go back up a bit?

I like Mo's suggestion that it could be all the jaw activity instead????

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

User

Posted 23 Jan 2017 at 22:34

From the Prostate Cancer Research Institute 2017 update:-

"Radium-223 may also reduce PSA levels. As most know, PSA levels are an indicator of cancer progression, with higher PSA values corresponding to worse outcomes. A significantly larger proportion of the radium-223 patients experienced at least a 30% reduction in PSA levels compared to the men who received a placebo. Although most patients do not experience a decline in PSA, they may notice a slowing of the PSA rise, which is a more common outcome with radium-223."

http://pcri.org/insights-blog/2016/7/8/xofigo-radium-223-an-overview

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

User

Posted 23 Jan 2017 at 22:41

I have just reposted something from Allathays on Raduim and PSA I am not techno enough to copy and paste it on here but he is saying the same that Raduim has no affect on PSA. I had forgotten that he had the ful 6 treatments. .

Lyn Zometa also doesn't reduce PSA it helps with bone pain and helps to strengthen the bone but has no affect on PSA .

So if Raduim isn't reducing it then what is ?

Titanium ? This is a very strong contender as Eleanor has pointed out.

Trevor himself as he is such an egnima this could be another strong contender

Abbiraterone I really doubt it after 15 months

Turmeric I also don't think so he has given this up

Cancer so active that it isn't giving of much PSA another strong contender given that the ALP is rising

Super human and about to make prostate cancer history another strong contender.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jan 2017 at 22:45

Brilliant Lyn. ❤

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jan 2017 at 22:54

So can the PSA still come from the bone mestasis? I am presuming because it is still pca it possibly could . ?

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 24 Jan 2017 at 00:51

Yes I think it is safe to assume that pretty much ALL of T's PSA is coming from his boney mets :-/

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

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