Advanced prostat cancer part 2

User

Posted 30 May 2015 at 21:13

We have just had a lovely visit from Trevor's half brother (Nixi) Earl is his actual name they haven't seen each other for forty years, same Dad different Mum's . I have posted about this previously but thought I would update as after chatting we know have (info from the horses mouth so to to speak) .

Earl was visiting from Canada, he is one of 4 brothers all born in Jamaica all from same parents same upbringing he described how before school they had to tend to the animals, goats , chickens , pigs they had to clean and feed them and then after school they had to do the same again so more feeding and cleaning before bed, home work was unheard of , all having exactly the same diet and life style, life was hard out of those 4 brothers 1 remained in Jamaica and is still living there alive and well . 1 emigrated to America at the age of 15 he died at 69 of advanced PC . Earl said it was advanced when he was diagnosed and there wasn't much that could be done. So pretty much like Trevor.

Brother number 2 emigrated to Switzerland when he was 16 and was diagnosed with locally advanced PC at 67 he decided to opt for no treatment (this reminded me of Lyns father in law we all make our own choices in life) he died at 70 of and not with PC. So out of the 4 brothers 2 are still alive but living very far apart and 2 have passed with PC but also very apart in distance.

Then there is Trevor same Dad but a different Mum and the same diagnosis , he was born in Nottingham , just about as far as you can get from Jamaica , yes he probably would have had a similar diet (his Mum would probably have cooked similar food) but honestly genetics for me plays the most important part in this story. Added to this the very hopeful and recent research into genetics and Cancer I can just see things taking off and one day there will be a cure. Not in time for Trevor but for all of the others that are yet to be diagnosed. Hope and science WAY TO GO.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 May 2015 at 22:13

Fascinating info Julie. Must have been a great reunion.

User

Posted 30 May 2015 at 22:47

Hi Julie,

Really interesting, thanks for posting.

Steve

User

Posted 31 May 2015 at 10:46

Julie SS

Interesting post and does start to back up my theory, genetics first and environment second.

Xxx

User

Posted 08 Jun 2015 at 20:37

inspirational thread.

User

Posted 08 Jun 2015 at 22:39

Hi Julie

I'm also sure that it is primarily genetics, my reasoning is how come John with spread and a G10 is doing so well four and half years after diagnosis, on an old hormone treatment too. I reckon it's having a dad who lived until 91 and having inherited pretty good genes. I'm not saying the damn disease won't get him and I am enormously grateful that we caught it when we did, who knows if a few more months would have made a difference, untreated.

John is quite slim, but has always eaten a varied diet, with nothing restricted although he rarely drinks alcohol (not so when he was young, but he was never a massive drinker). Anyway, I always said to him that his genes would help him and I firmly believe they have.

Lots of love

Allison

User

Posted 09 Jun 2015 at 00:01

Those on FB will have seen that I have had a few difficulties getting on the forum , not forum issues but children issues my adorable boys horsing around have broken my BRAND NEW LAPTOP . KIDS don't you just love them , long and short is £150 WORTH OF DAMAGE. I Tried putting them out for adoption but I didn't get any takers, I tried getting them to pay with pocket money but quickly realised (that hey I actually give them the pocket money so that means I am still paying for the damage)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif . I then tried house insurance guess what there is a £100 excess. So as I am know running out of options I have decided to do the only thing that Mum's can do in this kind of situation and just make them feel so guilty that they will do any house hold job that I ask for at least the next Mmmmmmmmmmmmmmmmm maybe 10 years.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif There is always a silver lining.

We have had a busy few days a family celebration a 40th Birthday that bought everyone together the sun shone all day , it was just a wonderful day filled with Sunshine and the extra warmth of being with family. What more can we ask.

Our newest member of the doggy gang (Tulip ) arrived today , so a 4 hour trip . Trevor and the boys are over the moon, she is a white Bull Terrier with a HUGE personality (she was a surprise Birthday present for Trevor) he has wanted one fore ever . I know only the brave , the bad and the ugly would ever be so mad as to buy a BULLIE . http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif I will leave you Guys to decide witch one I am.

For those that know me on the forum when there is good news then that's where I start, when the news is not so good I leave it to the end. So apart from the PSA rise the Kidneys aren't doing so well and creatinine levels are high so the last infusion of Zometa was halved . A little bit further along the rocky road. Next Onc visit 6/6/2015.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 09 Jun 2015 at 01:27

<<hugs>>

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

User

Posted 09 Jun 2015 at 11:02

Lots of love and hugs, Julie. My collie pup, Zanzi, is now just over five months, a real little thug. Wish you hours of fun and chaos with the new bullie !

Fiona xx

User

Posted 09 Jun 2015 at 13:03

let me see brave, bad, ugly Hmmmm

Tulip does not entirely look like her name, I doubt she smells like it and I don't think she is dutch so now I am trying to decide why Tulip? will have to think about that one.

The boys broke your computer being typical boys and scrapping indoors I believe, so endless house chores seems a reasonable way to repy the debt. If you really need to have them temporarily fostered you can send them to me anytime! Best to check I m at home first though!

User

Posted 09 Jun 2015 at 13:31

Sorry SS got cut off in mid flow there (story of our lives?!)

Creatanine increase may just be down to the fact that Trevor has been so much more active the last few months. More muscle usage = more Creatanine as a by product and if his Kidneys are a bit iffy they probably can't process it that well. I am not sure why Zometa would be reduced probably to give the kidneys less by products to deal with so they can cope with the Creatanine better.

Still trying to think why Tulip, and I have decided it is just that it is a cheery little name for what I hope is a cheery little dog.

will phone this week

xxx

User

Posted 23 Jun 2015 at 01:19

Just a little update I don't know what the weather is like with you Guys but here is like mid winter rain, wind and polo neck jumpers are the order of the day. The great British Summer what a flop.

So the reason that I could not attend MOS I had been awaiting a very special litter of puppies!!!!!! Not good news Alice was carrying 10 puppies and only 1 survived the birth, breeding is not always an easy thing to do but to lose that many is hard. The one little boy that survived was born first . With not enough puppies to stimulate milk production my worst fears have come to fruition and her milk has dried and I have had to start hand feeding him , this is every 2 hrs night and day so I am pretty exhausted but determined to at least try and save him. Hence why I am still awake at this hour next feed is at 1.30am with a constant supply of hot water bottles. I know have him back to his birth weight.

Loving the name of your new puppy Fiona.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Little Tulip is soooooooooo smart she has figured out how to unlock the gate into the field and let 13 Cocker Spaniels into the field (I am sure she is mocking me) She is good fun and Trevor and the boys are in hysterics laughing at her antics.. The laptop issues are still not sorted but on the plus side 2 very helpful children is no bad thing and I am MILKING IT.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

So next Onco visit is on the 6th July am I nervous to darn right I am. Trevor has had more back pain than he has for a long time but he seems to have much more energy now he is not taking the Bicalutamide. The hot flushes seem much more frequent just recently I can't figure that one out. I suppose all will be revealed on the Wiz visit .

A lovely Fathers day with all of his cards and phone calls and then we went for a local Fathers day meal out, Bri loved the Grumps mug http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif.

Mo intrigued to find out what was happening with George ? I was really sad to miss the shin dig , everything seems pretty calm on FB no pics of poles, sheep or Harleys ? Lyn has been suspiciously quiet .http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I will update with news after Onc visit.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jun 2015 at 07:02

Morning Julie, just to say I am sorry for the loss of the puppies.
That must be very hard work, especially as you not only have the physical aspect of night time feeds but also the worry that the little chap might not make it.
Fingers crossed for you
Best Wishes also to Trevor. Hope he gets more comfortable soon
Sandra

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

User

Posted 23 Jun 2015 at 13:19

Sorry to hear of the puppies but know the surviving one has a good chance in your care.

Fingers crossed for Trevor next appointment..He is also in good hands.

Weather ....well it is 35 degrees here and the sun is shining...just having some time out in the shade and thought I'd look in on my friends

Bri

User

Posted 23 Jun 2015 at 13:58

Devastating emotionally but also I suspect financially? I hope the little one makes it (not Trevor, the puppy - I don't think T could be described as 'the little one'!) The puppy has you and T has the Wiz - all will be okay xxx

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

User

Posted 23 Jun 2015 at 14:02

Julie

you know I am sad about the puppies and have fingers xd for solo survivor.

George and I do not x and tell so I will not spill on what happened when I went to see his etchings... pole dancing was postponed until I am the same size as Lyn Eyre either that or we have to swap roles next year.

I will be home before your wiz viz

So we can catch up properly then

User

Posted 23 Jun 2015 at 19:42

Oh Julie

That's so sad about the puppies, I can only hope that your kind ministrations will keep the little one going until he starts to thrive.

Always going to be concerned about Onco visits, especially when symptoms seem to be worsening, fingers crossed it is down to the extra work T is doing now he is off the horrible bicalutimide.

Lots of love

Allison xxx

User

Posted 23 Jun 2015 at 21:15

I am sorry to hear about your puppies Julie.

Hoping you are all okay.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 04 Jul 2015 at 01:11

OK so new Avatar posted Yes this is me , for those that no me this was oodles of years ago but I thought it would bring a smile. I am absolutely shattered. The last little puppy despite my best efforts died a little life that was not meant to be. As a dog breeder you have to develop a thick skin and take it on the chin . (yes Lyn a huge financial disaster) but tomorrow is another day.

So what is going on , well I am sure many of you remember the TV programme Mr & Mrs (that's a hint ) after 2 children and nearly 20 years together we thought it was about time that we made everything legal soooooooooo I am know Mrs B. There has been a slight altercation in that I wanted to have a double barrelled surname . T very gently pointed out that my new initials would be TB . http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif oops. Maybe not then. I suppose TB ON FB would be a bit much.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

So Mrs B it is then.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Blood test done today for Onc visit on Mon , nervous , squeaky bum time hell yes.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Jul 2015 at 01:13

No Puppy jokes after seeing my Boobs Guys.

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Jul 2015 at 08:19

Congratulations Mr and Mrs B.

Love the new avatar, you could be a model posing there!

Sorry to hear about the last little puppy, it must be very hard to have that happen, even financials aside.

Hope you have more success with the next brood

All the best

Sandra

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

User

Posted 04 Jul 2015 at 08:20

Congratulations to the new Mrs Boothe.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 04 Jul 2015 at 09:32

OMG Julie you wild dragon you ...love the photo. Initials JTB would not be that bad, could have been worse like JCB ha ha.

Many congratulations I am really happy that you have finally tied the knot so to speak. You know what my thinking was all along.

Julie Boothe sounds kind of cool.

Love you SS

When do we get to party?

Xxx

User

Posted 04 Jul 2015 at 10:59

Waaaaaaa - this is so exciting. Loads of love and congratulations to you both ❤️👰⛪️

Very sad about the puppy though and guess that means you won't be having an all expenses paid Caribbean honeymoon

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

User

Posted 04 Jul 2015 at 11:03

Congratulations to you both

love the new avatar

Best wishes for Monday

Carol x

User

Posted 04 Jul 2015 at 19:08

Hi Julie,

That's really wonderful news.

Congratulations to you both. Enjoy your weekend.

Steve x

User

Posted 05 Jul 2015 at 13:14

CONGRATULATIONS MR & MRS BOOTH!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Hi Julie,

So Mo says you've married your 'Turmeric Prince'?

You should change your signature here to 'NEVER LAUGH AT A TURMERIC DRAGON'http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I would never let a day go by without my five spoonfuls of turmeric in my veg drink. It's magic stuff!

So sorry we didn't get to see you at The Mill, and I'm deeply saddened about the loss of your puppy.

May life bring you more happy moments than sad from now on.

And please keep the banter going between you and Mo. You two have had me in stitches here so many times.

I see Mo has announced she's now an avid bird watcher. Aren't theses folks nicknamed 'Twitchers'?

I wonder if she found her new hobby while on the bike ride?

If I'd experienced a 'Perineum Crunch' like she did, I'd be twitching too - for months!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

All the very best,

George

B2PCa

User

Posted 05 Jul 2015 at 16:28

Lovely post and married, brilliant! I love the avatar too. Hope you had a great celebration and the blood tests go ok when the results come.

User

Posted 05 Jul 2015 at 16:50

Congratulations to you both...

I also read you don't drink Julie..erm I think I may just mention the Wurzels

Take care

Bri xx

User

Posted 05 Jul 2015 at 19:13

Well congratulations Mrs B ,you are a dark horse

Best pack away my big hat , agree with Mo when's the party

Good luck tomorrow

Si xx

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

User

Posted 06 Jul 2015 at 00:53

I would firstly like to say thank you Guys for the congratulations on our secret W Day. We wanted to keep it very low key and still haven't told friends and family. We have been together such a long time that we always felt as if we were married anyway and certainly bicker like we have been together for donkeys years. I think both of us felt it was just a formality in view of the circumstances . It was emotional especially at the sickness and in health line and when she said I hope you have a long and happy marriage. I have to say though T seemed very stressed before hand and I am still wondering . A did he think I might say No, B bloody heck that's it we are shackled or C he might have to be Mr TTB.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Secondly I don't know if anyone else has had this problem but I have had difficulty getting on the forum through updates so I have had to log out and go back in through google typing PCUK , well this is probably just my sense of humour but the first site it takes you to is wait for it a Donkey Sancturey , yep Donkeys nuff saidhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

So here we come Wizz you better have good news.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Jul 2015 at 13:04

Many congrats from me, Blossom, Storm and pup, Zanzi ! Love the avatar !

Fiona. x

User

Posted 06 Jul 2015 at 17:26

After a very busy week, I am trying to catch up. Many congrats to the 2 of you!

Paul

Stay Calm And Carry On.

User

Posted 06 Jul 2015 at 22:49

Scores on the doors, up to 137.5 so pretty much what I had guestimated in my sane hours. Although no where near the figure that my mind had run riot with. So yes a pretty big rise and although for some this would be a change of underpants time the Wiz who has nerves of steel pointed out we are still not at doubling point as last score 6 weeks ago was 85. So basically Abbi still in the back pocket next psa test in 4 weeks and next Onco visit in 8 weeks that is on the assumption that we don't have a huge jump at the 4 week test.

I have not only warmed to the Wiz over our 2 year relationship but I know think she is pretty smart. It makes such a difference to have confidence in your Wiz her thinking is that even though Trevor's starting psa was sky high it was and I say was not as aggressive as a low psa with the same spread. She thinks his body gives of a lot of psa and his disease had been there for a long time. Coupled with his brilliant response to Bicalutamide she also thinks he will have the same response to Abbi but herein lies the problem choosing the right time to start. Also with his heart problems it's a huge gamble so the longer we can put it off the better. We live to fight another day.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Jul 2015 at 23:08

Julie, I am so pleased to read this - not the perfect set of results but fair to middling I guess xxx

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

User

Posted 08 Jul 2015 at 19:42

julie SS

how I missed this post I don't know, maybe so caught up in your other news I just did not see it. I am sure others haven't either.

I know there have been one or two of our regular posters who have been having difficulty logging in just like you it seems to be cured by shutting down and going back into the main PCUK site so I am thinking there is some sort of bug in the cached info I will message the forum IT whizz and let him know.

Talking of Whizz, Wiz etc. The news on T's PSA is not the best ever for you but I am just thinking of something Jamie said at Leicester about PSA at diagnosis. He suggested that this is often a kind of benchmark and an indication for the Onco of what is happening with cancer activity. If that logic holds good your wiz is possibly thinking that a score of 137.5 is actually pretty good in the circumstances.

I Know the lovely Mr B always said to us that in advanced PCa the PSA is just a number and how a patient feels and how good the quality of life is was more important.

Anyway as you say T seems to be handling Bicultamide well and you still have more things to try so whilst things are relatively stable and T is doing well make hay while the sun shines.

xxx

Loads of hugs

User

Posted 08 Jul 2015 at 19:54

bit late

but congrats from me

must be the north south h time lag

run long and prosper

'pooh how do you spell love'

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

User

Posted 08 Jul 2015 at 21:16

So Pleased Julie, i missed this as well, i rang Mo today to find out how Trevor got on.

Hope to catch up with you all over the summer holidays, still not told the girls about the puppies http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

So my low psa is worse than trevor high psa http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif Bring it on !!

Love from us all xx

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

User

Posted 08 Jul 2015 at 21:18

Oh wow, I've been absent due to family visitors (BIL/SIL over from Sweden for a fortnight). Many congratulations to you both, what a wonderful post, I expect the boys were over the moon. So sorry about the pup, such a shame, poor little mite.

I think it is true about the PSA being relative, we have been told that from the start, why is it that someone like John has a PSA of 25 and spread (guess the G10 is the cause of that)? Whilst men with PSA of over 100 can have no spread. Maybe it is the G score element that counts in these cases.

Either way, I'm just thrilled to bits for you both

Love

Allison xxx

User

Posted 09 Jul 2015 at 00:26

Nope this post didn't seem.to crop up at the time.
Main thing us how are you and Trevor doing? Newly married couple, perhaps I shouldn't ask ;-)

I think Alison is right, it's just a number.

Hope you both enjoying the summer

Bri xx

User

Posted 08 Sep 2015 at 16:54

I know I haven't posted for ages , I hope you have all missed mehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif.

This is not an excuse just a reason Trevor has been feeling good and looking good and just for a short while it has been good to not have pca be your first and last thought of the day. I have this feeling that this summer was probably our last . A lot of people say that I am a pessimist with a really good sense of humour I disagree (not about the sense of humour) I would call my self a realist. I just wanted to savour this summer and pretend for a short while that we are normal . Of course we are not normal and the stats have proved it.

I haven't posted or commented but I will admit that I have been watching you lot, I have had my beady eye on you guys. The rows GOSH that was sooooooooooo hard not to comment. So yes a realist with a good sense of humour snooping on you lot.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif. Paul you have been a bit quiet I hope you are OK.

The weather has been poop hasn't it but one of our highlights was a huge family party with people we haven't seen in donkeys years , there was copious amounts of alcohol , jerk chicken by the bucket load, bouncy castle and a rodeo. Whoo Hoo.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif.

Our new Conservatory arrives tomorrow for the few that have been here they will understand why this is causing such excitement I can hardly contain myself.

So here we go we all know that the Wiz has nerves of steel well she bottled , Trevor had to go on his own yesterday (I had new puppies being born) and unfortunately I had to be here.

Scores on the doors.

PSA 260 up from 137 12 weeks ago. I will let Lyn work out doubling times

results of the bone and CT scan

Progression in ribs, Sternum ,Spine and Pelvis.

So Abbi tabs started this morning none of this is a surprise to me because over the last few weeks I have seen a marked decline . I think Trevor was shocked and obviously very low. Appointments know every 2 weeks . My main worry know is with Trevor's dodgy ticker and the Abbi tabs . The Wiz is also concerned and this is why she had held of from starting them. So know back on the Roller Coaster with a tight rope thrown in.

Puppy news , 101 Dalmations comes to mind we had 4 girls come in season and some bright spark (I don't know why I listen to him) said we should mate all of them and know look what's happened they are arriving by the train load. Yes Si I have a vacancy for Saturday girls (just in case you know of anyone)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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