I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Advanced prostat cancer part 2

User
Posted 19 Oct 2015 at 23:29

OK Guys so not such good news PSA UP AGAIN  460.4  I don't know why I added the point 4 maybe wishful thinking that it was just a point 4 rise . So up 100 in just two weeks actually just over whooooo this train is speeding ahead.  I still wasn't able to go with T for the appointment but his words where the Wiz isn't worried sometimes it can take a while for the Abbi to take affect. If I had been there I would have thought (are you serious) we are absolutely back in shark territory. 8 weeks in are you kidding me.

So answers on a post card please (its OK I can take it , I have come along way on the acceptance road) Hit me Baby one more time and just give me the truth . Yes that's you Lyn.

A how long before they will discontinue Abbi if it is not working?

B If anybody wants a puppy then I still have 4 available.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Oct 2015 at 01:13
Hi Julie,

Really sorry to hear of the PSA rise. Hope they can give Trevor something to reverse the upward trend.

Thinking of you both.

Steve x

User
Posted 20 Oct 2015 at 01:28

I don't know lovey, it doesn't look great. However, three things occur to me:
- the Wiz wouldn't lie - check back on Spurspark's old posts and see if there is anything there that helps you
- perhaps T's PSA has been so weird in the past that it isn't reliable as a measure - we know from Stan and Topgun that it is sometimes the inexplicable drop (rather than the rise) that indicates the really aggressive stage has been reached
- look at Allister - his PSA has been rising for 12 months or more

You are on my mind - and John said absolutely not when I mentioned how nice it would be to hear the patter of tiny feet in the house again; I am not sure why he over-reacted :-(

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

User
Posted 20 Oct 2015 at 06:53

Don't have the answers to your query Julie, just wanted you to know you and your family are in my thoughts.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 20 Oct 2015 at 07:28

Julie I agree with Lyn...the Wiz is not going to lie. When is T's next appt? Hopefully that will give a bit more clarity of the situation and if you can go you could ask those pertinent questions.

Placidway - I think it is quite immoral that you think it is ok to hijack our friends thread to promote/advertise your company/product.

Bri

Edited by member 20 Oct 2015 at 07:29  | Reason: Not specified

User
Posted 20 Oct 2015 at 09:24

I have reported the Placidway post and would ask the moderators to remove them from membership. Disappointing that they got through the system anyway but to choose the thread of a terminal man shows either crassness or a lack of knowledge & understanding of the subject .... neither of which would encourage me to use their services if I ever wanted to travel abroad for treatment :-(

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

User
Posted 20 Oct 2015 at 14:25
Julie

My SS have faith. PSA rise isn't good I agree but Trevor has a long way to go to get back to Diagnosis level. Let's face it he has been quote exceptional thriving despite such a horrendous start. I know you expect things to go South anytime but your Wiz would not lie to you. Next time you should be puppy free and able to go with him to hear her account first hand.

So sorry some sick idiot has hijacked your thread. Moderator please remove placidway as soon as possible.

Julie I will messenger you on fb later this week.

Xxxxxxxxxxxx

Mo

User
Posted 20 Oct 2015 at 16:29

See the PSA alongside all the other messages about Trevor's progress and also wait to see a pattern emerge. It's always worrying but he has shown such resilience let,s hope it continues. You need to be there next time! Thinking of you both.

User
Posted 20 Oct 2015 at 22:07

Thanks Guys as ever my rock, so many moons ago when I first posted with so much fear and panic and here we are 2 and half years on with all of those blue light days of heart attacks and the stroke firmly printed on my brain .  I am so grateful for the time we have had. Both of the boys are now at senior school and have had Extra Time with there Dad.

Ok so we are on a sticky wicket at the moment but we have been there so many times the old roller coaster so we buckle up and ride it again . If there is one positive that I can find in our journey it is that it has given us time lets face it none of us know when the grim reaper will come to call we could all face it tomorrow but OUR big C has made life Crystal Clear, everyday has to matter and everyday has to be respected and LIVED. Not always in a big way (no bucket list) but just make everyday count .

Life is a funny old thing we all take it for granted until we are given notice that we can't ignore.

Thank you Lyn for giving old PSP man (can't remember his name I think it was A hole or could have been Bar Steward http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif the elbow.

Love to all.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Oct 2015 at 22:26
Hi Julie

I seem to remember that PSA can go down with Abby if you change the steroid (this came from Prof De Bono as I recall). I can't quite remember if the question to the prof was about blood pressure or PSa but I do know that my friend then went on to have a further 18 months of a very happy life until struck down by an entirely unexpected event (not PCA). Trevor does have a very unusual case so let's hope his other bloods are more in line with a good result.

You are such an amazing woman, the way you support your beloved man and your youngsters is exemplary. I know you have your eyes wide open, but remember not to cross that anxiety bridge before you need to, this is one thing that tends to keep me sane in the dark hours when the worry descends.

Lots of love

Allison xxxx

User
Posted 20 Oct 2015 at 22:27
julie you are one strong lady and you still manage that humour to shine through.

Carol x

User
Posted 21 Oct 2015 at 12:31

Bugger, not the best update you have posted.

So glad to see your onco is persevering with Abbi, i would want a scan before stopping the treatment .

If you ever need a puppy sitter or keep an eye on the boys so you can attend Trevor appointment just let me know.

Fingers crossed for the next test.

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 31 Oct 2015 at 22:59

Thanks guys for all of your input .  Si yes I agree that a scan would be needed before stopping the Abbi. Alison thanks for that on the steroid change , I will mention that .

Next Wiz appointment this Mon , how has he been well pretty good up until about 4 days ago to be honest he has been pretty fab , getting stuck in with helping with the puppies (nearly all gone thank goodness http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif) yes he has complained about more back pain but his walking has been good . Of course I watch him with my third eye (trying to not make it obvious) . Last few days he has been well what I can only say as grumpy and tired . Asking are you ok is like a red rag to a bull , so I just sit back and watch .

We have also had worrying news Trevor's daughter and my darling step daughter has found a lump in her breast she is 21 and far too young to be coping with that sort of worry . The breast clinic have found a second lump and have done biopsy's on both although rare at her age it is not unheard of and given Trevor's cancer and her Mum passed at 39 with cervical cancer that spread . Life EHH for some of us one worry after another.

I will fill you in with stats after Mon. Keep everything crossed.

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Nov 2015 at 08:43

So sorry the problems are piling up Julie.

What an amazing pair you are, Trevor with his let's get on with it attitude and you quietly using your "third eye", and both of you living for each other and the family.

I'm sorry to read about your lovely stepdaughter's possible problem. Confirmed or not, at this stage the mind goes into overdrive doesn't it.

Will be thinking of you all tomorrow with fingers crossed

 

We can't control the winds - but we can adjust our sails
User
Posted 01 Nov 2015 at 10:18
Hi Julie,

Really sorry that things are not getting any easier for you both. I admire the strength you have shown in coping with everything.

I really hope everything is ok with Trevor's daughter. Thinking of you both.

Steve

User
Posted 01 Nov 2015 at 17:16
FFS Julie my SS

This must be a very worrying time for you, Trevor may be feeling bad because of his Daughter. Our minds work in very mysterious ways and guilt is one of the emotions that we never really show but feel intensely. If Trevor is aware of the rare but possible genetic links between Breast, ovarian and PCa from active Brca1 and 2 genes he may feel in some way responsible for what his daughter is going through. Of course he is probably very concerned about his own situation too and the combined effect is obvious to your 3rd eye.

21 is very young indeed to have to endure this worry and to have to think about what happens next.

Genetic counselling is hardly ever talked about here and the arguments for and against it can be very emotive. As are the options in relation to risk factors.

I pray that these are just benign lumps and nothing more sinister as I am sure you all are too.

I will be back in UK on Friday and at home the Tuesday after that so will call you then. In the meantime I will have you in my thoughts and will watch out for your update.

I'm not sure who has the hug blanket just now but I think you should really have it back.

Biggest hugs to you all

Xxx xxxxx

Mo

User
Posted 01 Nov 2015 at 20:44
Julie

Just to send you a hug, tomorrow will give you the answers you need about Trevor. So sorry that your beloved step daughter is having such troubles, I can only say thank goodness they are treating it seriously, all too often at that age you get fobbed off (mostly rightly) because hormone changes can cause lumps. Will be thinking of you tomorrow and waiting anxiously for the update, I'm hoping your third eye has a wee spec in it and is not seeing clearly (just this once).

Lots of love

Allison xxxxx

Edited by member 01 Nov 2015 at 20:45  | Reason: Not specified

User
Posted 01 Nov 2015 at 21:02

Hi Julie,

All of us here will have everything crossed for you and Trevor tomorrow, it must be your turn for a drop in PSA.

Sorry to hear about your step daughter you have enough to deal with.

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 01 Nov 2015 at 21:36
Hi Julie

Hope everthing goes well tomorow thinking of you both.

Carol x

User
Posted 02 Nov 2015 at 02:50

Hope today brings some good news Julie I shall be thinking of you all!

User
Posted 02 Nov 2015 at 08:48

Good luck with the Wiz today Julie. ..Hoping the news is good.

Fingers also crossed for your step daughter

Bri x

Edited by member 02 Nov 2015 at 08:49  | Reason: Not specified

User
Posted 02 Nov 2015 at 09:22

Thinking about you Julie xxx

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

User
Posted 03 Nov 2015 at 08:35

Morning lovely, how did yesterday go? And has your step-daughter heard anything?

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

User
Posted 03 Nov 2015 at 09:27

Hi Julie,

Just come back from dog training weekend and am catching up on your thread. Hope situation with step daughter is thoroughly investigated. What a sod life is at times, you have had more of your fair share to deal with. Sending thoughts and love as ever.

 

Fiona xx

User
Posted 03 Nov 2015 at 17:16

Sorry to keep you all waiting Guys.

Well what a day as it's nearly Bonfire Night I thought this would be an apt description on how the appointment went. You know when you get the box of fireworks and there are the huge rockets and strange shape ones that light up the sky and there is always the funny looking one at the bottom of the box that doesn't light properly and just sort of fizzles and splutters out. Everyone waits for it to reignite and do something spectacular and it does one last little splut and goes out. Well that was our appointment a bit of a fizz a bit of splutter and then we were out of the door.

Scores on the doors.

PSA down from 460.4------toooooooooooooooo 457

So ok it's down and not up but come on 3 points what's that all about I suppose for some 3 points is a big deal but we are used to such huge numbers that 3 is not in our vocabulary. I though the Wiz had left of a few zero's at first.

We are taking the 3 as a positive as lets face it last time it was a rise of 100 . So another reprieve and continue on with the Abbi next review in 2 weeks.

News on PB my darling stepdaughter she is still on holiday in Egypt (oh yes more worry) she is home tomorrow and hopefully will get her results next week. I am finding dealing with this situation harder than Trevor's diagnosis it is just so wrong on so many levels. For the moment I am staying positive that it will be nothing sinister (but then that little worry monster on your shoulder wakes up )http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Nov 2015 at 17:29

I know the little worry monster well. Is it a he or she ?? We both wish the best results possible all round.
Chris and Elaine

User
Posted 03 Nov 2015 at 17:55
Hi Julie

3 thats good for Trevor take this as a positive score.

Carol x

Edited by member 04 Nov 2015 at 17:16  | Reason: Not specified

User
Posted 04 Nov 2015 at 07:24

Stable PSA is good Julie. You should be encouraged. I have been stable for nearly seven months now albeit in the mid twenties but feel comfortBle with that. Though Trevor's numbers are high remaining steady state not to be sniffed at. Maybe appointment fizzled out for good reasons nothing much happening which in PCa terms is always good news.

User
Posted 04 Nov 2015 at 10:05
Julie SS you could view it that the drop of 3 gave T a reprieve on the abi tabs. It is at least slowing down and going in the right direction. In two weeks time that damp squib firework may just start fizzling again.

There is a lot of anxiety in your house right now and you must feel like a cat on a hot tin roof.

I am thinking of you and doing the nearest I get to praying that all turns out well for your step daughter.

Karen and I always joke publicly about me being her wicked step mum but she loves me unconditionally as I do her. I know your relationship is the same. I have been through some traumas with her but nothing anywhere close to this so I can't imagine how frightened you must be.

Xxxxxxxxxxxxxxxxxxxxxxx

Mo

User
Posted 04 Nov 2015 at 22:53
Julie

Sort of good news or no news but a reprieve for sure. It's always odd when you go to an appointment fired up so to speak and then ,,,,, nowt much happens. Reminds me a of book I once read by Joseph Heller called "Something happens" well nothing happened and that was ok. We felt so weird after being told that John would be on chemo last Nov/Dec and came out of the appointment totally bemused and somehow felt cheated (I know, daft or what?) and so another year has passed and we are looking at a similar situation this year, but that extra year is under our belt.

Hard to know what to say about your lovely step daughter, my daughter went though hell with potential cervical cancer last year and could do nothing as she suddenly became pregnant, Well the birth was a miracle on so many levels, not least as all those cells disappeared with the birth. I was so frightened for her and all has turned out well despite our fears, I hope this is the same for you and the family. Maybe not a wedding night baby and being born on Nana's birthday type of miracle but you deserve one all the same. Fingers crossed for you Julie.

With massive hugs and loads of love

Allison xxxx

User
Posted 05 Nov 2015 at 11:26

Hi Julie,

Not a big drop but as everyone has said, it didn't go up which must been some sort of comfort. 

I really hope things improve in the coming weeks and you receive good news about your stepdaughter.

Thinking of you both.

Steve xx

 

Edited by member 05 Nov 2015 at 11:38  | Reason: Not specified

User
Posted 05 Nov 2015 at 13:17

Great News Julie,

The Abbi has slowly put the brakes on the PSA rises and now hopefully it will select reverse and the large drops will come.

In the place where we are you can but hope http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Hope you daughter got back from Egypt and the results are all good.

Love from us all

Si xx

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 12 Nov 2015 at 08:20

Just a quickie P is home safe and the best news of all biopsies came back negative for cancer. SO ZIPPY DE DO DAH WONDERFUL DAY.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Nov 2015 at 09:00

So pleased for you Julie that is great news

Si xxx

Don't deny the diagnosis; try to defy the verdict
User
Posted 12 Nov 2015 at 09:29
Hi Julie,

That is really wonderful news. I'm sure it will give you and Trevor a real boost.

Steve xx

User
Posted 12 Nov 2015 at 10:07
Wow that's great news!

Best wishes, Arthur

User
Posted 12 Nov 2015 at 10:35

Great news . Best wishes
Chris

User
Posted 12 Nov 2015 at 11:48

Phew !! Breathe out time eh

So pleased that you've had good news for a change. A little bit of a boost for you all

We can't control the winds - but we can adjust our sails
User
Posted 12 Nov 2015 at 13:49

Fantastic ! So pleased for you. xx

Fiona.

User
Posted 12 Nov 2015 at 14:55
And breathe.......

Thank goodness SS I am so relieved and happy for you.

Xxx xxxxx

Mo

User
Posted 12 Nov 2015 at 21:32
Really thrilled to read this Julie xxx
User
Posted 12 Nov 2015 at 22:57

What a relief for you all x

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

User
Posted 13 Nov 2015 at 00:25

Julie

Very pleased for you. Life throws horrible things at us, so it's great to read your excellent news.

Paul

Stay Calm And Carry On.
User
Posted 16 Nov 2015 at 23:30

 

We are of to see the WIZ tomorrow and I'm feeling slightly sick

will she say good news you guys you have another month to lick

Or sorry it's not working it's the bucket you might Kick

 

What ever the out come our fate is already sealed

2 plus extra years and our feet are pretty well healed

 

This roller coaster has been up and down , most of it I have worn with a frown

I have covered it with laughter even when I'm feeling down

 

I won't be alone tomorrow because I know you will all be there

So if the news is not so good and I need some one to care

I know you Guys will all be there supporting my Derrie're

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Nov 2015 at 23:48

Good luck.
I'll be thinking of you.

Paul

User
Posted 17 Nov 2015 at 00:08

You do sometimes do too good a job of the laughy jokey 'I'm made of rock' act but you can't kid a kidder - we know what is really going on in your heart. Do you want me to come and give T's prostate a withering look - I can kick your derriere at the same time xxxx

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

User
Posted 17 Nov 2015 at 02:07
Good Luck, Julie.

You always know everyone here are always here for you both.

I will be thinking of you and saying a little pray for you. I know not everyone believes on this site but I know it has helped me at times when I have felt really low. You can share your fears with Him and he always listens.

There was a time in the summer when I felt so low that I nearly did a very stupid thing but by some miracle, He was there for me and I didn't feel so desperate anymore.

I really hope everything goes well for you both tomorrow.

Steve xx

User
Posted 17 Nov 2015 at 06:48
Thinking about you and doin all the rootin I can, 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 17 Nov 2015 at 09:38
Hello Trevor & Julie

Hoping and praying all goes well for you

Blessings,

Arthur

User
Posted 17 Nov 2015 at 09:38

Good luck Julie and Trevor xx

 
Forum Jump  
©2024 Prostate Cancer UK