Advanced prostat cancer part 2

User

Posted 30 Jul 2016 at 00:45

Yes Lesley he has been on Lanzoprazle for about 10 years with his heart meds also daily aspirin which can cause ulcers so this could be the cause of the bleeding and the sensible part of me thinks that would make sense.. The other part of me that slightly resembles a chicken with its head cut of googling like a lunatic and only focusing on worst case scenarios sometimes wins the day.

From day one we have lived with no hope , then day one turns into day two, then three months , then six months and here we are three years on all with so many dramas . Yes Lesley I so envy people that live normal lives with what shall we have for dinner type thoughts .

I suppose that is what keeps us all connected on here only those that have lived it or are living it will ever understand our normal is so far from normal.

Lovely to hear from you Paul I hope the tummy upsets have sorted themselves . T has had a lot of cramping , burping and hicups in our situations it is so easy to add 2+2 and end up with the help of DR Google at 102 . I don't have a copy of his latest scan results but to be honest the image is imprinted on my brain there wasn't really any areas that were not affected and how he manages to stand upright is beyond me.

DM THANKYOU so much for the offer of the comfort blanket but I think there are others on the forum that need it at the moment far more than me. I would only get it covered in dog hair. 😊

I was realy struck by Bazzas post on the town called acceptance , I moved there quite some time ago the only trouble is it is like living with the stepford wives it is a false town where nothing is real , everything is pretence because you never really accept.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jul 2016 at 07:20

Hi Julie, I never really know what to post on your threads as your/Trevor's struggles have been so much harder than mine yet against all the odds you are still here fighting on for which I just wanted to give my admiration and thanks as you are inspirational for so many. Keep fighting, 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 30 Jul 2016 at 08:20

morning all

I sit hear reading all your responses, read about all your ups and downs Trevors, Iruns, Nikonsteves, hull yorks to many to mention then the support of Julie, devonmaid,lynneyre again to many to mention

16mths ago I was not aware of any of this, we say our lives are not the norm this is true,and also are kept secret upto a point on here

but it also seems to me that our disease is kept secret, I check out places visited Dr, hospitals no where have I seen any literature on what to be aware of, we our family and friends tend to be the torch bearers

yes I am aware of the ad from the tv, but have you heard anyone who is not aware talk about it, wish I had the answers to my questions

so many come on here looking for guidance and help, can not remember how I found this site as no one from what I remember told me of it

regards

nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 30 Jul 2016 at 10:03

Thinking of you both Julie...

Regarding google it helped me in two ways. When I get my initial PSA result of 20 I was told by the receptionist that it was recorded on the computer as normal. I googled this and arranged an appointment with the GP the rest is history.

The 2nd Google success is finding this site via Google

Bri xx

User

Posted 30 Jul 2016 at 10:45

Yet another twist and turn in this roller coaster ride! Everyone's ride is different - some have long stretches on the level where you can sit back and 'enjoy' the ride, some only get relatively short and turbulent rides. Then there are the slow upward sections - if you can just relax you can enjoy the scenery. But of course you know that once you reach the top of this section there will be a drop; it might be a little drop and then another level section or it might be a big drop. You just don't know for sure what is round the next corner. All we do know is that we are strapped in, the bar is down holding us into our seats and we can't get off. However much you scream or cry they never stop the ride until it's over - so we try to laugh - often hysterically but what else can we do. And in the long run we don't want the ride to end because we know that the last section is that great plummeting drop before it is actually all over. So we hang on in there, willing the ride to go on for longer, just glad to have our friends around us cheering us on.

So to Julie, Devonmaid, Glen T, Piglet and all the others on particularly turbulent parts of the ride - hang on in there, laugh and enjoy when you can and know that all your friends are behind you.

BTW I was a frenetic Googler excusing myself as I thought being a nurse would make me able to critically analyse the papers I read! What a load of tosh - I could never really understand research methodology and the terminology used. This site is real - real people discussing their journeys, feelings and all the 'little' important things that seem to get overlooked. No better source of support!

Edited by member 30 Jul 2016 at 10:52 | Reason: Not specified

User

Posted 31 Jul 2016 at 07:11

Rosy - I'm nominating you for 'post of the year'.

User

Posted 31 Jul 2016 at 21:09

Seconded!

And turn over damn page....

User

Posted 31 Jul 2016 at 22:37

Right you page gremlin !
Take this , and that , and this. Or else.
Turn the sodding page ....

User

Posted 31 Jul 2016 at 22:47

Ten working Cockers could barge through ▶️▶️▶️▶️▶️

User

Posted 31 Jul 2016 at 23:10

Go girl.

I think each page holds 50 posts. If I counted right this is post 50 of the page,so one more might do it.

Thanks Chris

Edited by member 31 Jul 2016 at 23:12 | Reason: Not specified

User

Posted 31 Jul 2016 at 23:15

Well it showed page 14 but didn't turn the page. Well will this one do it I wonder?

User

Posted 01 Aug 2016 at 01:08

That's a third and a fourth from me Rosy you have summed up this roller coaster ride brilliantly. Have to say though that I don't like heights and fast speed scares the tish out of me.

Perfect analogy.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Aug 2016 at 21:55

I think Rosy has summed up what we have always called our roller coaster ride perfectly. Best description ever. I think the one Mick and I got on was like that specsaver advert, not what we xpected, certainly not what we chose but once on board and that bar goes down there was no going back.

It's ironic Mick would never go on them when we were at our Condo in Florida saying he refused to put his life in the hands of a spotty high school kid. Im sure Mr B was once a spotty high school kid but he was a really good driver all things considered.

Your Onco is also a good driver so at least you are in great hands.

as for Googling I do it all the time. have since I first discovered it but I have learnt to pick around the answers and use a bit of logic and rationalise when I can. When the results of a 60+ poo test come back positive they give a list of about 20 things that can cause blood in the sample including as minor an issue as gums bleeding when brushing your teeth. Regular aspirin use is the Number 1 cause apparently. So its another case of trying to sit on those busy hands of yours and willing it to be nothing PCa related and nothing too serious.

Thinking of you though and saving my paper shredding in bin bags to bring as soon as I can. Almost done with paintbrushes, drills etc so hoping to come bearing those bin bags and also an emergency ration pack soon.

xxxxxxxxx

User

Posted 08 Aug 2016 at 23:24

Hi guys,

Update on T oncology and Wiz visit today I wasn't able able to go as it was a full day at the hospital he didn't get home until nearly 6pm. So the information has been a bit disjointed.

So here we go PSA at nearly 2000 the Wiz is saying another 4 weeks probably on Abbi then the switch to Raduim223, this will be at Addenbrooks as it can't be done at Peterborough that's a journey of just over an hour each way.

Trevor has had increasing back pain but he is certain it is just a pulled muscle and not related to the cancer I am am going to go with his interpretation he knows his body but that doesn't stop me worrying. How can that high a PSA not be causing pain?

One of the blood counts was lower than it should be but questioning Trevor on which one is like pulling teeth, apparently the wiz thinks it might be related to the rectal bleeding the count should be 120 and Trevor's was 89 any ideas guys?.

The afternoon was spent with investigations on the rectal bleeding nothing was found on the rectal exam so next steps are CT on bowel and stomach plus camera job, one strange thing found was he has developed a umbilical hernia .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 08 Aug 2016 at 23:29

I think the blood count is his Hb. That would figure with the bleeding so it means he's a bit anaemic. Good to hear there's the Radium waiting in the wings!

Take care

Rosy x

User

Posted 09 Aug 2016 at 18:15

The rollercoaster continues! Could the hernia be causing some of the pain? An unwelcome development but hopefully something they can do something about. Interesting that they are now talking of radium 223 which is most effective when the cancer is active,mpresumably they think the PSA growth is indicative of that. As always thinking of you both!

User

Posted 09 Aug 2016 at 19:51

Hello Julie,

my oh my! What a lot of stuff yourself and Trevor are going through! You're both in my prayers. In my mind I cannot comprehend the meaning of a PSA of 2000! In my own case when diagnosed, my PSA was simply 0.9, yet my grade was T3b. I know everyone is different and the cancer within us is also different. Life is so very hard when you cannot make sense of it all!

Excuse my stupidity, Julie - who is the Wiz?

Frank.

User

Posted 09 Aug 2016 at 23:32

Hi Frank,

The Wiz is our Oncologist it is my nick name for her , we are not allowed to name our Drs on here so I just call her the Wiz after the Wizard of Oz.😊

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Aug 2016 at 22:33

And so Trevor goes on, PSA 2000, a mere snip compared to the 13000 starting rate! Seriously, I know you are worried and who wouldn't be.i do think Trevor has this special gene that John and Si have too and I think George has it as well, plus a few others.

I see the puppies are doing well Julie, that's one good thing at least.

Big hugs

Love

Devonmaid xxxxx

User

Posted 14 Aug 2016 at 10:47

Hi SS

so Trevor still feels relatively OK despite the high PSA ( still low compared to the starting point) Abitabs seem to be keeping things slower moving. I think Paul has a very valid point Radium 223 has been shown to be more effective with active cancer so that might be why the Wiz wants to move onto that soon. Of course she may also have inside info on regional funding and availability too. One thing she has consistently shown you is that she is proactive when she can be.

The 89 vs 120 blood measure could relate to any number of things, also some labs report on a different scale to others. So if the Wiz didn't make a big thing of it (enough for T to recall what it was)then I would not worry too much.

An umbilical hernia is allegedly quite easy to fix (quite common in young babies and probably puppies too??) I don't think that would cause back pain directly but if T is moving awkwardly because of it, then maybe that could have stressed a ligament or pulled a muscle a bit.

I am home all this week so will call you

love to all as always

xxxx

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