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Advanced prostat cancer part 2

User
Posted 25 May 2014 17:27:29(UTC)

[Note from moderator: This conversation is a continuation of an archived thread. To read the posts that came before this message, go to http://community.prostatecanceruk.org/posts/t9496-Advanced-prostate-cancer]

 

OK as I can't find my original post and it was under diagnosis also this heading is not really relevant anymore. I have decided to join you on the dark side.

So our new address is

999, The Dark Side,

Advanced Prostate Cancer Boulevard,

TAJ BFN

Love to all X

At least I will know where to find myself

http://community.prostatecanceruk.org/posts/t9496-Advanced-prostate-cancer

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 23 June 2017 19:21:13(UTC)
Just a really quick update Trevor is now on the oncology ward and the difference in the level of care is like night and Day.

His bloods show that he is responding to the Antibiotics and his Liver scan showed nothing untoward , his kidney function is responding to the IV fluids.

My Man is fighting back he still isn't eating but I did manage to get him to have a mini triffle .

He is still confused and hallucinating when I arrived he thought we were in Beirut apparently there has been gunfire and explosions all night and he was worried that we wouldn't get a flight out . I have worked in care homes for years and have experience with Alzheimer's patients and one thing I learnt was go with it and don't try and bring them back to reality but join them in there world. So I told him that I had booked us a first class seat on the first plane out of there .
He was really happy with that but then the pirates and the long boat arrived and he wanted me to cut someone's throat I told him I only had a hospital plastic fork but I would stab them in the eye 😱

So we are very much still in Shark Territory but we have a huge sprinkle of HOPE and I feel so much more confident with his level of care . He is Shamazing and I don't know how or why he has so much fight in him but he does and as long as he does I will stand shoulder to shoulder with him wether we are battling bombs and gunfire in Beirut or Pirates in a long boat. He is fighting and I am right by his side.

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 14 June 2016 20:49:14(UTC)
You no Guys it's ok Chris in particular to not no what to say , I wouldn't no what to say to me either but I do have a sneaky feeling that we have a similar sense of humour.😆
Debbie thank you for posting it is still such early days for you and I can remember those oh so raw feelings and complete panic moments.

Steve no worries about mentioning your wife it is ok my friend.

Where do I get the strength from ? Time , Time is the only way after 3 years on this journey you somehow manage to get everything into perspective it hasn't always been like that in the beginning I was a quivering nervous wreck afraid of everything . It is impossible to live your life like that and yes I sometimes think that it is easier to accept from the beginning that as in our case to hear the words Terminal you don't expect much and every day is a bonus and wow we have had over (just got to nip of and add that up)1095 days . That's an awfull lot of days to waste, I have said this before Cancer isn't a death sentence it is a LIVE sentence and yes my humour has helped me and I hope lots of other people, it isn't a coping mechanism it realy is me , not quite sure where I get it from . I think I was born with it , for me laughter is the essence of life it doesn't matter how serious the subject there is always a funny side and almost always it makes everyone feel better. The three Ls are my mantra Live ,Love and Laugh.
So what better way to end this post LIVE, LOVE and don't forget to LAUGH.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 30 July 2016 09:45:35(UTC)

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!

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User
Posted 27 May 2014 17:36:45(UTC)

Julie i have just noticed that you have come across to the dark side

Welcome i hope you enjoy you stay

Don't deny the diagnosis; try to defy the verdict
User
Posted 27 May 2014 22:25:00(UTC)

OK so here we are on the dark side, boxes are unpacked , ornaments are neatly arranged, kitchen is up and usable.  I have to say moving to the dark side was a scary thing to do but it is not quite as dark as I thought it would be.  There are friends here and Si has his fish tank so it's not as scary as I thought.

Given a choice I would rather be under the pca undetectable with no lymph or bone mets, but hey ho I wasn't,t given that choice.

Our new grandson has visited today, 4 weeks old (he didn't drive himself) proud Mum and Dad bought him in his brand new car seat, I have cuddled and sniffed all afternoon, the newness of new life. I am an atheist , sorry for those that I might offend but I don't believe in God or a afterlife, what I do believe is our memories live on in future generations, the future is our new beginning. The passing on of our genes and memories,  We live on in our children, grand children etc. . We will live forever.

Watching Trevor today cuddling little Louis , priceless. A wonderful moment

This is just my thoughts and beliefs , we all have our own belief and what ever is right for you I respect.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 27 May 2014 23:37:59(UTC)
Hi Julie,
Whatever your beliefs the miracle of life is a 4 week old Grandson😍 even if he is a bit behind in his driving skills🚙
I hope Trevor is bearing up and coping with your zany humour.
Take care,
Life is for living
Barry (alias Barrington )
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User
Posted 28 May 2014 07:46:51(UTC)

Julie my other half is a complete non-believer too, much as Trevor believes in fact. Me, I'm more ambivalent (~called hedging my bets perhaps!!)
We co-exist happily together each with our own views. I am happy to accept anyone's bviews as long as they don't start telling me to change mine.

We can't control the winds - but we can adjust our sails
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User
Posted 02 June 2014 08:22:01(UTC)
I've found your new hiding hole, Julie.

I don't intend to change anyone's views, we still pray for you all, no matter what ! The medics can't do it all themselves.

Julie, reading your last posting before you moved I'm surprised with how well you are coping, well done girl !!

In our house we've only had 2 breast cancers, 1 basal cell carcinoma and my PCa, so I count ourselves very lucky.

Blessings to you all.

Chris.
User
Posted 06 June 2014 09:42:02(UTC)

Onco visit yesterday, I was running late as usual so decided to wear my new skirt rather than iron something. Off we toddle slightly apprehensive as T missed a Zometa infusion when he was in having his stents fitted and we were both wondering would this affect his psa.

I helped him off with his boots for his weigh in (3kilo lost but he has been very careful with his diet) the extra weight he had gained was probably not helping with the heart issues, any way bending down back on with his boots. We go and sit back down and a very nice lady came over and said "excuse me dear your label is hanging out on your skirt Know every one in Oncology knows how fat I really am and how much I paid for my skirt , if Trevor didn't have mets in his ribs I would have elbowed him for not telling me.

Score on the door 15.4 so another drop for those newbies who haven't read our journey his starting point was 13000. Trevor was for the first time slightly negative at this drop, I think because he has had such huge drops in the past , his last psa 12 weeks ago was 25.2 . After I gave him the pep talk , any drop is good and after missing his last infusion etc etc he seemed more positive.

We then spent nearly an hour with our lovely oncology nurse Sue, she also gave him the pep talk and asked him how he copes with everything for the first time since his dx he opened up and admitted that some days he wants to give up. Again for those newbies (heart attack, stroke, chronic asthma) and of course cancer. Our roller coaster is pretty steep. He then looked at me and answered for Julie and my boys that's why I don't give up. Yes I was teary eyed. Then typical T said shall we have lunch in the canteen. So off we toddled but this time with my label firmly tucked in.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 06 June 2014 10:31:26(UTC)
One thing I've quickly learned is how this forum can bring a tear to your eye. Another one reading the above.

Good luck to you both.

Paul
Stay Calm And Carry On.
User
Posted 06 June 2014 10:55:19(UTC)
At least it was only the label and not the skirt tucked into your knickers. Now that's embarrassing believe me!!
You are both such strong people. All the best Sandra
We can't control the winds - but we can adjust our sails
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User
Posted 06 June 2014 11:18:29(UTC)

PSA drops often get slower %-wise as the treatment progresses. So long as it's still downwards then that's the main thing.

I recall agonisingly slow drops at times but learnt the above.

User
Posted 06 June 2014 11:33:41(UTC)
Hi Julie
glad to here the drop in psa if Trevor is anything like Eric the scores on the doors don't matter any more he dosent even ask now I do.
Made me chuckle about the skirt at least someone told you I would have just let you walk about all day like that making people giggle.Good to hear Trevor is getting some sleep Eric exact oposite now he's sleeping all the time up at 8am drove daughter to work by 9,30 had to send him back upstairs he will probably waken around 5pm. last until 8pm .inbetween got to give him a poke just to see if he is.still with us gives me time to see to my Mum making sure she takes her meds get her shopping do some housework then back to Eric.
Sending you and Trevor our best wishes
Carol
User
Posted 06 June 2014 11:46:55(UTC)

Must admit Julie, I'm fast getting to the point where I don't want to know some of Neil's results ! Good that Trevor's PSA is on a downward slide though. I rarely wear shirts but am often guilty of wearing my pants back to front. Thankfully a reasonably quiet week here, but it's another oncology appointment and a second bout of chemo for Neil next week. I can't get over how frail he is starting to look. Like Trev, from what he has said, he carries on for me. Have just taken him up to Bristol Downs where we sat in the van and had coffee and carrot cake, just take one day at a time and see how he feels. Love to you both !

Fiona.

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User
Posted 06 June 2014 12:27:57(UTC)
Lovely post Julie and more good news. It is certainly a Roller coaster this disease and you have had more than most. I am just about to go off for my latest results so hope I can continue the trend! Have a relaxing weekend and celebrate!
User
Posted 06 June 2014 16:39:18(UTC)
Great news Julie, I also thought you was going to say your skirt was in your Knicks :)
Here's hoping your ride is smooth through the summer (and beyond)

Bri x
User
Posted 06 June 2014 23:00:17(UTC)
Julie, a drop is a drop is a drop. We all know how important doubling time is so presumably halving time is just as significant. Trevor's halving time is about 15 weeks; tell him the fact that he has a halving time is great news! With a PSA of only 15.4 there is nothing to stop him getting out there and cutting the grass.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 07 June 2014 10:28:41(UTC)

Hi SS Julie ( for newbies Julie and I are Soul Sisters)

Your news of Trevor's PSA continuing to drop has cheered me up no end in what has been an awful week not just for me and my family but for others as well. Just tell Trevor that the next drop will take him to a score 1000th of that at diagnosis very , very few Men get to say that.

I laughed at you and your label, unlike others I did not envisage you with your skirt tucked in your nicks more of a Paddington Bear moment 'If found please return to Tom Cruise' or something.

The harsh reality of "man jobs" has hit me this week, I have never been any good with gadgets or tools maybe because I have never had to be, so this week I decided to take on the strimmer ..... the results were a little haphazard as in oops I didn't like that poppy anyway and oh s..t that was my own foot. After about two hours I had managed to complete the task of edging all our lawns, significantly reduced the stock of plants, almost remove a toe or two and finally the wretched thing stopped working. How was I to know that rack I took it off on the wall was the thing that charged it ! My next door neighbour was very sweet and refrained from telling me what a muppet I was. He was very sweet and actually mowed the lawns for me as he was worried I might do serious damage with the mower. Maybe I need some of TGs super grass stuff.

Tomorrow I will see what havoc I can cause with a hedge trimmer (Chainsaw massacre part 3 coming up I fear)

Maybe I need to come and get lessons from you, Trevor and the boys xxxxx

your SS forever

Mo

xxx

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User
Posted 08 June 2014 10:44:14(UTC)

The Man Jobs,

Mo maybe we should start a new thread with helpful hints and operating instructions for all of us lady's that find Man Jobs so difficult. Of course then we would have the big debate on which of the 24 headings we list it under. and a route map would be needed to help us find it again.

I am no shrinking violet and years ago actually built a brick wall, OK not exactly a wall more of a brick border, but it was 4 bricks high and in a straight line. So why do I find all of the jobs that Trevor used to do so difficult. I was known locally as the flat pack Queen, I can assemble anything in flat pack form faster than you can say Ikea.

Give me anything that needs plugging in and I am totally useless and as for the ride on, well that's a drama in itself. I can't even get on it, let alone start the blooming thing and yet I watch Zack and he is 9 and he is zooming up and down on it. I find it very frustrating.

I have taken a leaf out of TG's  book, (no pun intended) not the fake grass that's not possible in an acre. Fake flowers, I kid you not. My plant pots are brimming with colourful blooms, they don't need watering , pruning or dead heading. So I have got that one sorted.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 08 June 2014 11:24:44(UTC)
OK you two I can see that I will be in for some hard bargaining but I will throw in some very nice artificial ( note not the plastic word) hanging baskets🌻 and 4 look-alike topiaries 🌳 Genuine drip dry, never lose their shape....guaranteed 100% artificial .....can't be fairer than that
Life is for living
Barry (alias Barrington )
User
Posted 08 June 2014 11:35:49(UTC)
I see Louis Van Gaal has asked Utd to lay semi-artificial grass at the training pitches at Utd's training ground. Why not go the whole hog at home?

http://www.dailymail.co....hanges-Old-Trafford.html
Stay Calm And Carry On.
User
Posted 08 June 2014 16:19:39(UTC)
Barry (tg), what would the girls do with their ride-ons !!!!

Julie, YES, whatever drop, IS a drop in the right direction.

My PSA is due August and I don't expect a drop, but a slight rise.



Chris. xxxx to the girls.
User
Posted 08 June 2014 18:16:52(UTC)
Fingers crossed for your next results Chris

Bri
User
Posted 08 June 2014 20:45:05(UTC)
Agggg how did I miss this post?

I'm thrilled to see that drop. For most people that would be amazing, good on you Trevor. Seriously. Trevor's PSA must go down in the annals of huge PSAs and look, he has many serious health problems and yet, he is a born fighter. Must be something in the Herriot blood line (Julie are you still doing the cancer course? ).

I do lots of man jobs too, I have tended to try my hand at most things along the way but John is better than I am, more patience for a start. At least I get things done, if not perfectly. I would rather not have to take the rubbish out though, that's the worst one.

Loads of love
Allison xxxx
User
Posted 08 June 2014 20:59:04(UTC)

Hi Everyone,

I find the conversation very interesting because I am right at the beginning of the journey you are all taking.my PSA is over 13 and my scan confirmed " suspicious area " and I am having my biopsy on Tuesday.From what I can gather I will then have some decisions to make.I am now 70 years old so that may make some decisions easier.my wife Diane keeps re-assuring me that she will ne there for me whatever which both makes me feel better and also guilty.I think I will find it easier to follow other peoples thoughts and feelings and so please forgive me for butting into your conversation.

Love

Raymond

User
Posted 16 June 2014 13:32:23(UTC)
Raymond. Forgiven, but if you need answers it is better to start your OWN thread.




Julie,
It was good to meet you and Trevor on Friday, keep up the humour, and tell Trevor it was good comparing notes and I will be raising the topic of awareness aimed at the Black women on Wednesday at Westminster.

Take care both of you, and the lads + ALL the puppies !!!!

Chris. xxxx
User
Posted 21 June 2014 20:14:05(UTC)
User
Posted 22 June 2014 21:55:25(UTC)
Julie,
You've found your old thread, well done.

Chris. xxxx
User
Posted 23 June 2014 00:43:21(UTC)

Firstly glad that you are all back safe and sound from Leicestor and that you all had a really good time. Just ever so slightly jealous that I couldn't be there. Did you eat all of the food because I haven't received my doggy bag.

Secondly Chris I think you misunderstood my comment about targeting women, I meant all women not just black women. Awareness for breast cancer is all around us, on buses, when we pay for something the little box on the counter full of pink ribbons, any way that's for another topic.

Thirdly Trevor has had his invite for REHAB but we said NO NO NO, not the Amy Whinehouse rehab but the Cardiac Event type rehab. This is basically a monitored gym work out.  So T has been told he can't use any of the equipment , he is not allowed to do any impact activities. So his gym work out is a slow and steady walk around the outside of the gym. How much is this costing the NHS , he can and has been doing slow walks around the field with our dogs. (cost to tax payer nothing). Sorry but this is madness. But Trevor has to go to rehab and we said NO NO NO.

So next gripe Cardiac Event, (what's that all about) sounds like a Party in the Park, Rick Mayal had a Cardiac Event, no he had a heart attack. Why do they keep changing the terminology. no wonder we are all confused, the next thing we know PCA will be Walnut Challenged.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 June 2014 08:45:25(UTC)

Julie,

I think it will be targeted at ALL women as one can't be 'racial' !

Most of us are home safe, some are still getting home, Barry (TG) is stopping of beside the Thames, the Scottish contingent should be home tomorrow. Yes there was lots of food left, I didn't get a doggy bag as I was too busy doing the photos ! We will have to try to get you there NEXT year!

I should think Trevor could get enough exercise walking round your boundary fence, it would be cheaper than the gym !

We hope that Trevor keeps on improving slowly, like the rest of us, how we look to outsiders belies how we feel health wise!

Chris. xxxx

 

PS.  Just had a good giggle over "Walnut challenged"

User
Posted 23 June 2014 09:23:39(UTC)
Hello SS

Trevor and the Gym, OK so the NHS want him to go into rehab for his cardiac event. I say you should suggest that he puts his feet up eats a large flying fish with rice and peas pops the occasional beta blocker and cuts the grass once a week. Far cheaper & much more fun . Of course they are just terrified they would induce an 'event' by asking him to ride a bike or something.
I do think walnut challenged for PCa could be modified a little maybe all the men on this forum have a nut allergy.
I was laughing at Leicester at the Elf and safety ..serve yourself toast but caution the machine may be hot ....No kidding.
xxx
Mo
User
Posted 04 September 2014 23:40:59(UTC)

Hello Guys,

It has been ages since I have posted anything,  dare I say it things have been pretty smooth. OK we have had a couple of chest infections, horse size Aunty Bs and shed loads of steroids but no flashing blue lights, so we have been sailing in much calmer waters.

 

Grass is sort of cut, well half cut then the ride on broke.  After 5 years of living in the worst house in the street I have decided to revamp and decorate, it still is the worst house in the street from the outside but inside I have gone all Gok Wan, fresh paint, matching curtains and throws all in a very fetching grey, apparently grey and silver are the new look. .

 

So anyway enough rambling and my reason for posting , PSA results tomorrow , we see DR T at lunch  time it seems ages since our last visit now we are on 12 weekly appointments, it almost seems a life time ago, funny how you can put the PCA on a back burner something I never thought possible this time last year, and now here we are again with the old familiar stomach churning worry that we all have the night before the big day.

So if anyone is still up and awake wish us luck and keep fingers and toes crossed.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 September 2014 00:19:53(UTC)

Hi Julie, good to hear calm waters for a while. No news really can be good news! Long may it continue. Let's hope for good news on the PSA I'll be thinking of you!

User
Posted 05 September 2014 01:51:21(UTC)

Still up and awake Julie - best of luck tomorrow, I will be thinking about you both. Well actually, I will be thinking about your poor neighbours and wondering whether you are intending to paint the ride on a nice shade of grey & silver :-)

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


User
Posted 05 September 2014 05:21:07(UTC)

Good luck guys.....I too will be thinking of you. ..I'm off to give my blood this morning.

Bri

User
Posted 05 September 2014 07:19:03(UTC)

Good Luck today Julie hope all goes well, and you too Bri

I am off for Zolodex today should have had it three weeks ago guess that's my first HT holiday, it was lovely

Cant wait to see the silver and grey, your right about the latest thing but that was 1983

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 05 September 2014 08:12:41(UTC)

You on about Julies decorating or your hair Si
Bri

User
Posted 05 September 2014 08:14:40(UTC)

Wishing you all the luck in the world, Julie. Decorating is very therapeutic. I'm on my hands and knees carpet tiling for if and when Neil comes home. Have caved in and hope to get dog walking friend to paint the front room though instead of me doing it !

 

Lots of love, Fiona and doggies.

User
Posted 05 September 2014 08:17:43(UTC)

I'd heard and read about the anxiety we suffer when it comes to blood test time, I think there is name for it isn't there?, and I have just started to experience it myself. Next Monday should have been my first 'proper' follow up PSA test after hospital but the appointment has been cancelled and I now have to go on 15th Sept instead.

 

Good luck with yours, I'll keep my fingers crossed for us both.

 

Steve

User
Posted 05 September 2014 09:33:24(UTC)
Thinking of you guys.

Xxx


Life's a Marathon. Run in peace.
User
Posted 05 September 2014 23:11:39(UTC)

Julie??? I am worried by the silence :-(

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


User
Posted 06 September 2014 11:18:27(UTC)
SS I am looking forward to seeing this interior design fest ..silver and grey I cannot believe that you have not put purple or red in amongst that somehow.
Hope all went well with Ts check up, post soon or we will all be chewing our nails again.
xxx
Mo
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User
Posted 06 September 2014 15:12:15(UTC)

Laptop crashed last night so I couldn't update, sorry to worry everybody. OK so psa up to 66 , not the news we wanted to hear. I suppose in the back of my mind knowing how high Trevor's initial psa was and how quickly it had dropped could it climb back just as fast.?

Dr T seemed at a loss with no particular plan of action, to be fair we have always known that we don't have many options, she is adopting a wait and see , she wanted to do a 12 week review but I disagreed and she has moved to 8 weeks. Steroids were suggested but Trevor has been on steroids for his asthma for around 2 months now and we still had the rise. She also mentioned new drugs but did not name any so I am presuming Abi and Enza, she is reviewing his other medication to see if there are contraindications with these. So for now we wait and see what happens in 8 weeks, I have never been very good at the waiting game.

 

It is really difficult for me to ask direct questions with Trevor there, he has refused to talk about the cancer from the word go and I accept that is how he deals with it. Honestly I felt Dr T was fobbing us off and was in a way saying that's the end of the road. Deep down I think Trevor thought the same thing.

 

Its time like these that we need TG to pop up and say something very sensible and meaningful. Like pull your socks  up girl and soldier on. Life is for Living.

 

Bri I have fingers crossed for you, Steve psa anxiety is called squeaky bum time. and Si (what holiday) I thought you had just been.

Mo, 3 RED cushions in the lounge and large red rug in the kitchen covered in Cocker Spaniels

Thanks to all for thinking of us. X

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 September 2014 10:01:00(UTC)

Hi Julie,

Sorry to hear about Trevor's PSA rise, but in your world 60 is a drop in the ocean. As long as Trevor feels good then bugger the PSA.

Cant wait to see the new designs battleship grey sounds ........... well nice

Just finished my 3 week 1 day HT holiday and i felt magic, Not will have to keep a close eye on the dates in future cant start feeding Mr cancer.

We all send our love and the girls send there love to the dogs, Sorry they want to know how many you have now.

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 07 September 2014 10:52:07(UTC)

I wouldn't panic yet, there is always the possibility that this rise is a blip and is the aftermath of that missed infusion in June.

I have been trying to search back to see which member it was that posted with similar complications to Trevor but it is hard to search for anything specific on this new platform if the posts are probably in the archive section. I will keep searching. Fact is hon, if they said he could have Abby-tabby but there is a risk it will make his heart worse, is that really a risk? I understand why medics might be averse to trying something that could have consequences for other ailments but weighed against the risk of doing nothing, it might be a no-brainer.

Did you see the wonderful nurse while you were there? Did she have any words of wisdom?

Even if I am talking bo****ks about the missed Zometa, perhaps telling Trevor that is probably all it is might just give him a bit of peace of mind.

Battleship grey and dog hair sounds lovely x

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


User
Posted 07 September 2014 12:41:24(UTC)
Hi Julie
Yes that rise is a worry, it's probably proportional to our worry at reaching 5 as John's PSA tends to be low and Trevor's was massive. Getting it checked in two months is a good idea though 6 weeks would have been better. I can't understand why anyone would consider leaving that for 3 months. Well done to you for fighting that battle and winning. I think they will check his various meds and then decide what the next step is, it's not going to be simple with someone with Trevor's medical history.

I doubt they will do nothing at all, has he even had Casodex added yet? Sorry for not remembering. John remains on Stillbestrill so that's another possibility.

Loving the sounds of battleship grey, it goes great with brown lino from memory.....

Big hugs Julie

Love Allison xxxx
User
Posted 07 September 2014 12:46:15(UTC)
Hi SS the rise in Trevor's PSA is not what you wanted or needed to see, however it is still good by comparison. The other drugs might actually be some of the older HTs, Like Lyn I have been trying to find the name of one I am thinking of ..Devonmaid's John is on it and doing well. I suspect Abby may be a risky option it has a whole list of meds that are contraindicated and some of them are everyday drugs ike statins. My answer to that though is are the statins being taken for a life threatening illness or just as a precaution in which case ditch them and have the Abby. I was very surprised when I watched the last Snuffy video about Abbi at how many doctors and pharmacists are unaware of this. There is now a lot of evidence that shows it is a brilliant drug and can have amazing results for those it suits.
Enza also has some issues it is classed as a "chemo" drug by hospitals and nurses do not handle it without gloves given in a little pill pot to swallow without touching (a feat in itself whe each dose is 4 horse tablets) etc. The evidence for that drug seems to be that it is being prescribed too far down the line and should be given sooner. If you are worried about pushing for answers because of T ask to have a quiet word on your own.
Catch up before Saturday my firend xxxx
Mo
User
Posted 17 September 2014 19:44:02(UTC)

Lyn thanks for reminding me of the missed infusion, I had forgotten about that. As you say it may have nothing to do with the rise but Trevor was immediately lifted when I mentioned it.

Our lovely urology Nurse only works Tue-Thur and our appointments have been moved to Fri so we didn't see her but I have left a message saying that I want Ts alp and T levels phoned over. That was Mon I left the message and so far nothing, so I will be ringing again in the morning. Thanks to PRO-MO for the suggestion.

Alison, Nanny, I love it. Casodex was added last year so we have already used that option.

News front the ride on is now fixed again, it spends more time at the pig farm (that's where our ride on fixer man lives) than it does in our barn.

I have just realised where the silver grey inspiration came from, I just caught sight of my self in the mirror, OH NO it's my hair.

Love to all as always.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 September 2014 23:42:01(UTC)

Have you not heard of hair dye?

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


User
Posted 10 October 2014 23:25:23(UTC)

Well here we are nearly that time of year again, the nights are drawing in and I thought today maybe I should put up the xmas tree. I know what you are all thinking (is she mad it's only Oct) the truth is xmas makes me feel good. It reminds me of my childhood when everything was ok with the world, magical times. OK thinking back they weren't always that magical there was the time that my Dad left the Turkey in a phone box on Xmas Eve (he had imbibed a little too much Xmas cheer) and we ended up with Mum not talking to Dad and a fry up for xmas dinner. Yep magical. So that's it the tree is going up.

We had the annual visit from Trevor's American and Canadian cousins yesterday, know I don't want you to think that I don't enjoy there visits on the contrary it's lovely to see them but they do seem to have a very maudlin preoccupation with death. The whole 5 hr visit was spent telling us who had died, who is just about to die and who has taken out a funeral pre-payment plan, lets just say that tact isn't there middle name. Of course to some this would sound very depressing until you picture the scene  of 5 very elderly black ladies sipping tea , eating Ginger cake and occasionally farting. At one point I thought they were going to break into song and give the old reggae rendition of HIM KICKY BUCKET.

There is a point to this story apparently 2 of Trevor's 5 half brothers have died of pca so this is not looking good for the genetics. More reason for the boys (Trevor has 5 sons ) to get early testing. Trevor never met them so he wasn't upset just shocked. Yesterdays visit could explain Trevor's reaction today. He had his appointment for his Zometa and came back visibly shaking apparently he was kept waiting longer than usual and this probably gave him too much time to think. Our lovely Urology Nurse called him into a side room (this isn't normal practise) she said she wanted to speak to him privately , he assumed she was going to give him bad news and nearly fainted. In fact it was to discuss my request for ALP and Testosterone to be added to his next psa test. She rung tonight to check if was OK, so she was obviously worried about him.

So to back track when I rang to get Testosterone and ALP level results his ALP is 73, I know this is within normal limits (here I go) but it still seems on the higher side of normal , or is that me just over worrying. Answers on a postcard please.

Apparently T levels are not routinely checked and when I asked why they seemed confused as to why I was asking. It is going to be added to our next psa test . I can't believe that it is going to be added just because I have requested it. When I spoke to our Urology Nurse tonight she had read Trevor's notes and it seems the next course of action is to drop Bicalutamide and then this can be reintroduced at a later date. I am needing help understanding this guys so again answers on a postcard it seems to me she has rumaged around in the tool box and come up with a screwdriver.

Next visit on Nov 7th 

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 October 2014 15:22:54(UTC)

Hi Julie and Trevor,

Sounds like that was a very long five hours! : )

I can't advise about treatment here, but I can add to your comments about requesting various tests to be added every time Trevor has a PSA blood request form.


For ages now I've had to ask for Testosterone and Bone profile to be added to the routine PSA test list.of bloods.

Why are these nurses/doctors always so surprised WHY we ask?


I would say I AM SURPRISED THAT THEY ARE SO SURPRISED.

Isn't it vital that we watch testosterone along with PSA, and need to see the Bone Profile results to check our ALP?

I agree with you totally. It's a good thing we take the initiative and tell them exactly what we want on those request forms, but isn't it a shame that we have to tell them in the first place?

All the best,


George

User
Posted 11 October 2014 18:27:52(UTC)

Hi Julie,

 

Sounds like they want to give Trevor a break from Bicalutamide and its side effects for a while. Using the anti-androgen on an intermittent basis is not a bad idea. Eventually it starts to work against us & using on & off may postpone that happening. Others say stay on it as long as it works for us. It's just different opinions.

 

The serum T. level is often a bit higher when on Bicalutamide as it blocks , not stops.

 
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