Advanced prostat cancer part 2

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

User

Posted 16 Aug 2016 at 22:32

Re the blood count: yes that sounds like the Hb count (sometimes with the decimal point moved one place). 130-150 is about normal for a man; below 80 is the level of anaemia when a transfusion might be offered.

Tony's PSA on diagnosis was over 2000 and he was in severe pain. It went down to about 5 on HT, and then when this stopped working, the pain kicked in again when it reached about 150,. Enza knocked it back to about 3, and then a few months later it shot up again, but this time it got well into the hundreds before the pain returned. So in his experience, the pain level is not directly related to the PSA.

Now the pain is severe, or would be without the great palliative care Tony is getting. No one pays much attention to the PSA now - it's just a number, and there is no active treatment that will reduce it now. The PSA is only one indicator of the behaviour of the cancer, and at this stage of the disease it doesn't seem to tell us anything very useful. They seem to be more interested in the blood counts now, as this is a better indicator of general wellbeing and also of the risks of bleeding or infections.

Marje

User

Posted 06 Sep 2016 at 23:57

So a quick update Wiz visit today,

Scores on the doors and no surprises PSA up to 21060

Alp up to 230

Marje you were right low blood is HB and now down to 9.1 from 9.4!

So all in all a downward trend , I am not surprised I watch him like a hawk , and although everyone says how well he looks (!the old black gene ) I can see he is struggling . His breathing is good so not feeling breathless . It's just a spark that isn't there his eldest daughter visited a few weeks ago and she also commented .

His pain level is good he does have a few more aches and pains in his back which he refuses to put down to the big C he says they are age pains who knows , he knows his own body so I will go with him on that.

So full blood count in 2 weeks instead of 4 to check HB.

New bone scan to be done in the next few weeks with hopefully results by next Wiz visit in 4 weeks.

We get to stay on Abbi until next visit and I suppose I am a bit of a stick in the mud and I am dreading the next step Raduim because that is another tool out of the kit bag used.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Sep 2016 at 00:12

Forgot to say results of ct scan on the bleeding from his rectum showed nothing untoward so that was good news there was a few areas that where not clear on th ct so next step will be the camera up the ooby Dooby.

So he is not a happy bunny.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Sep 2016 at 01:33

Ah lovey, this is not the best post I ever saw from you but not the worst either; there must be someone looking over your boys to get another happy summer all together. Now they will be back to school and the autumn will bring you who knows what challenges (hopefully a bit of a break from all the puppies for a while at least?) And the abby-tabby is clinging in there ... just! Perhaps you could ask them to stick the camera up the ride-on at the same time?

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

User

Posted 07 Sep 2016 at 01:40

In fact, I might come and visit you on Monday or Tuesday to check thast you are looking after yourself properly?????

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

User

Posted 07 Sep 2016 at 02:22

Wow - I'm not sure what to say. So I'll just say that i always look out for your posts and am thinking of you all x

User

Posted 07 Sep 2016 at 07:25

Always following you and wishing you the best of luck Julie
Chris

User

Posted 07 Sep 2016 at 07:32

Keep going girl and sending my best wishes to you all.

Thanks Chris.

User

Posted 07 Sep 2016 at 07:38

As you say he is still on the Abby for now so those other tools are still in the bag. Good to hear the scans did not reveal anything else to deal with though.
The aches and pains could be old age as well, we all get them. And if Trevor is adamant that's what they are then that's what they are I guess

Thinking of you all

Bri xx

User

Posted 07 Sep 2016 at 08:14

I know how much you worry about Trevor, when we were all there last week he was the most talkative I have ever known him to be, he ate well and looked as though he was moving about quite well. Definitely not as upright but his account of his bowel investigations was really funny. He did say he was not delighted at the prospect of a rear end camera shot. I almost suggested him watching the Billy Connelly u tube clip. He is such a fighter, maybe his dismissive attitude of the PCa serves to make him stronger!

Lyn makes, a great comment, another whole summer with the boys and all the family, 3 years ago you would never have thought that possible.

Radium 223 may make a big difference when it does get deployed and in the meantime Abbi keeps things at bay I think although I hope that was a typo on the PSA figure in your post.

Your boys are an absolute credit to you both, they have impeccable manners a quiet confidence and are thoroughly charming. You must be so proud of them.

You did look tired Julie and no wonder. Still gorgeous and witty, I wish I could get over more often. Somehow you need to make a bit of time for yourself too. Once Grace has had her puppies maybe a little break so you can slow down just a little bit?

See you soon and biggest hugs as always

Xxxx

User

Posted 07 Sep 2016 at 09:15

My dear Julie

A worrying post, your underlying concern comes over and not surprisingly. Trevor is a conundrum, PSA like we've never known but still keeping upright. He is our talisman for surviving when all indicators are off the scale, so please keep on doing what you are doing Trevor. It must be so difficult for you, if you are anything like me you find yourself brimming up and batting it back down.

I don't know what to say love, I just wanted to send you love, no one can stop the worry but we can wrap our arms around you and send hugs. Time the blanket went home I think, don'tt you?

With all my love

Devonmaid xxx

User

Posted 07 Sep 2016 at 09:47

Hello all I havebeen following this post and although I am new to the forum and at the start of the journey with my OH who was diagnosed in June with a G 10 I just wanted to add my love and respect to you all. It must be such a comfort when things get difficult and to me Julie, I don't know you but I think you and all the others staying strong and positive, well on the outside, is worth so much. I only hope I can draw inspiration and strength from you all when I need it.

Thank you so much.

Love and very best wishes

Yvonne

User

Posted 07 Sep 2016 at 12:38

Hello Julie,

I've never commented on your posts before, I've read them all.

I admire your resolve in all that's been thrown and you both and the way you deal with it in a matter of fact way and with humour in many of your posts.

Very best wishes,

Arthur

User

Posted 07 Sep 2016 at 13:08

Dear Julie,

Arthur said it all there.

We admire and respect you both so much, and the way you keep that sense of humour, whatever you're faced with.

I think the whole forum is, and always has been, right there with you through all the ups and downs, and no matter how tough things get, and how worried you are, you can still make us smile (often through tears of sadness and frustration).

Love to you and Trevor.

Big Hug from Tyneside,

George, Lynn & Katrina

B2PCa

User

Posted 07 Sep 2016 at 14:52

A serious post for you Julie, you are obviously concerned. Treatment change is always worrying because it reduces tools in the box and it may have unwanted side effects. On the other hand I know my oncologist likes radium 223 as they were a trial area and thinks it is a very helpful intervention at the right time. Hope you are looking after yourself too!

User

Posted 07 Sep 2016 at 15:33

Oh, what a pain in the ***** to have an endoscopy to put up with too! I have had one of those and the "prep" beforehand is awful. My sympathies to Trevor.
Still, it must indicate that there's a good chance of a worthwhile life beyond it all, otherwise they wouldn't be bothering. And you still have Radium 223 ahead, which will be a breeze compared with the above (or do I mean the down-below?).
Take care of youself,
Big hug,
Marje

User

Posted 07 Sep 2016 at 21:34

Julie,

I've said before that I read some people's posts and just don't know what to say...and your most recent post is no different.

Just want to say again that I really admire you.. and all the ladies and families of the guys who have on-going and continuing treatment and problems with this " 'effing " disease.

Hope all goes well with Trevor... and:

Keep Right On... doing what you do.

KRO

User

Posted 10 Sep 2016 at 13:48

Just to say "hang in there" Julie like you always do.

I hope the rear end camera jobby goes well (as far as those things can anyway !)

Will be thinking of you all.

Best Wishes

Sandra

*****

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

User

Posted 12 Sep 2016 at 23:43

Oh guys I must apologise for my last post it was all a bit down , I have re read it and it was almost like I had given some one the stats and said stick that on the forum for me. .

So any way here I am not quite a bounce back but more back to my old self, The puppies are adorable and new owners say "How can you part with them " "you must be so sad when they leave" and I am thinking are you Mad ! Are you Fricking Mad, They are just s*** machines ,they look so sweet and yes they are adorable but a litter of five puppies produce at least 25 poops per day and they are so darn happy that as soon as they see me they are skidding and treading in the poop . James and Zack are brilliant and the most used words in our house is " Can Some one Do A Poo Run". Constipation is my friend 🤗 As soon as I wake up I think please let those pups be constipated. 😉.

So yes SS it was a typo 2160 and that is just the PSA not the number of puppy poops. 😆 Yes I am worried guys but hey I have been worried since the start , the last few days T has seemed more like his old self from the start we have had such a hard journey but somehow and I don't no how he has continued to defy the odds and I hope any newbies reading with a similar prognosis can take comfort from this post. Today he has helped strim some grass, done the school run , been to Tesco , fed the dogs . OK so he can't bend to help with puppy poop but I think that is pretty amazing . Or is he having me on 🤔

Bone scans are booked , blood tests are done , so onwards and upwards ,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Sep 2016 at 06:12

Ah Julie, why do you apologise.

For most of us an occasional "down" day happens and that's without the rubbish that you have to put up with.

That you need to keep forever cheerful and upbeat for your family is one thing and understandable - but us too? No my dear, we are the safety valve that lets off that steam!

Your Trevor (like the new avatar by the way) is a walking marvel just like a few others on here. They are a constant source of amazement at the indomitable spirit of the real battlers.

I know you are worried and nothing anyone can say can take that feeling away from you but you know full well that we are here for you.

You have three powerful reasons there to be so proud. Add yourself to the mix for the cherry on the top!!

**********

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

User

Posted 13 Sep 2016 at 12:10

Dear Julie,

There you go again, having me splutter a mouthful of tea all over the place. Constipation is your friend?!

I bet we can't find that quote in any book.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Too funny!

Your Trevor is an amazing guy. Everything he's doing daily is incredible He refuses to have his routine spoiled despite the massive battle he's busy waging.

To sum up, you two are an incredible couple, and your posts are eagerly awaited by us all.

They bring inspiration to so many AND always a smile, whatever the news.

You're heroes to us, and long may you continue.

Warmest wishes,

George

B2PCa

User

Posted 13 Sep 2016 at 20:52

Hi Julie

Today It's my big birthday ! I think I've had a hard paper round because I'm sure I'm only forty, if not where the hell have the years gone? Anyway, thanks for the laugh as it reminded me to be grateful that I'm lucky enough to be around to get older And not to moan about the aches and pains which I think I've earned over the years, they are only aches and pains and I'm lucky I can take some painkillers and be ok.

Constipation is my friend haha, from the number of enemas John had after his RT recently I don't think he'd agree but I see your point, that's a lot of sh1t created at yours.

Seriously though, we all have our moments and even you are entitled to be free to express your fears with us. I know you can't talk about things much at home so please share those fears with those that understand. No amount of happy talk can hide the situation you are in, but it can make the journey a little less painful from time to time, at least for us who read your lovely missives. Maybe you should do a blog. I've started following one on Facebook called Peter and Jane and it's a bit sweary but about daily family life in the 21st century, it makes me laugh out loud and that's a good thing.

Your little pups are adorable but I've no doubt they are hard work, it sounds like Trevor is doing his best to help and long may that continue as I'm sure that sense of being normal helps him a lot.

Hugs to you all

Devonmaid xxxx

User

Posted 19 Sep 2016 at 20:26

Hello Julie,

you and Trevor are still in my thoughts and prayers.

Despite his difficult problems, it seems Trevor is more active than I am. My wife still cuts the grass ( a small patch ) and puts the bins out. I think that she believes I'm unable to do it! I go shopping, but if the list is large, she will come with me.

Like the others here, it amazes me how brave you are - still able to cheer us up. We should be cheering you up. But I can't think of anything right now.

Lots of love to you both. xxx

Frank.

User

Posted 04 Oct 2016 at 20:56

My how time flies when you are having fun , I have been so busy with puppies first two litters have all gone to there new homes we have had some lovely new owners and when they climb into there cars with there new additions to the family wrapped in there blankets it makes me so happy to no that I have given people so much happiness , all of the hard work and poop , poop , poop and yet more poop is so worth it when I see there smiling happy faces . They always ask if I am sad when the puppies leave 🤗🤗🤗🤗🤗🤗🤗🤗🤗 honesty is my middle name so I always say Of Course I am I will miss them terribly 😂 . They have no idea how much hard work it is .

Trevor and the boys have had a weekend away , Ts eldest daughter organised a rented stay in a 9 bed Manor House with all of Trevor's children and there offspring it's not easy to get everyone together in one house. I had to stay and look after the gang but I did get a Sunday roast delivered .

So where are we on the PCa front , scans were done 2 weeks ago and Wiz visit was yesterday have to say I was fully expecting worsening of Mets and a move to Raduim 223 imminent . Trevor's movement has defiantly declined in the last month and even though he has protested that his back pain is just Well Back Pain i didn't believe him .

So it turns out he was right and my new name is Negative Norma , scans revealed improvement in mets i kid you not ( totally gobsmacked) HB back up to 9.7 . PSA up,so not all plain sailing but hey , not sure how , not sure why after a year on Abbi and continuous rises in PSA to get this result is Shamazing .

So just for the record

PSA up to 2340

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Oct 2016 at 21:02

2,340 not sure what happened but think my iPad had a coronary. The Wiz is contacting Addenbrooks because she is confused but more good news new NICE ruling is he can start Raduim 223 and stay on Abbi at the same time , so watch this space guys.

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Oct 2016 at 21:41

Shamazing indeed - what a miracle man he is. They should do a one man research project on whether this is down to turmeric or poop.

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

User

Posted 04 Oct 2016 at 21:57

Keep fighting brother. Well done for getting the R223/Abby blend. Let's hope it's a fine vintage.

Bazza

User

Posted 04 Oct 2016 at 22:23

Way to go, Trevor. It will be very interesting to see how 223 and Abby work together, maybe give some symptomatic relief as well which could improve mobility? Some good news there I think Julie let's hope there is more to come.

User

Posted 04 Oct 2016 at 22:54

Thank you for replies guys,

I am still shocked and stunned after the previous bone scan that showed significant progression this latest one has gone in reverse so in reality we are back to where we were 12 months ago .

Lyn I have tried donating him to science but they said that was illegal 😆 I did offer a BGOFF and thought I could chuck Si in as well but they said No Way they couldn't handle both of them 😱

So who knows

Turmeric

Aspirin

Good old fashioned I am not going yet

Puppy poop

That old black Magic

What ever it is I need to bottle it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Oct 2016 at 23:59

Fantastic news! You two are an enigma. Long may it continue..

User

Posted 05 Oct 2016 at 06:56

Bottle it indeed Julie.

What a man!!

Time to not only evaluate what you have been given in terms of treatment but to stop and look at yourself.

I know Trevor and the boys help where ever they can but it's you who are the rock they are all supported by. Can't have that crumbling due to lack of maintenance can we.

Grab a bit of me time before the next lot of poopy puppies if you can, even if it's only a spa day with a mate.

We've built our foundations around the base of Trevor's rock but we can only do so much to help so give US a hand by reassuring us that you will take a little bit of care of yourself too

*****

Edited by member 05 Oct 2016 at 06:57 | Reason: Not specified

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

User

Posted 05 Oct 2016 at 08:57

Hi,

This is really good news, whatever is making things work, long may it continue.

Take care to get plenty of rest yourself.

Steve

User

Posted 05 Oct 2016 at 14:14

YAY, YAY and thrice YAY

Reading this today has made me smile. So many dips in that rollercoaster but a nice slow gentle climb (with the brakes applied) is such a welcome relief for you all.

It will be very interesting to see what happens if T goes onto the combi treatment. Quite a few people with advanced PCa have reported that Abi seems to make things better in terms of wellbeing, mets etc. yet PSA stays level or rises. I believe it was the lovely Jamie that said Abi is only deemed as failing when 2 or more factors get worse. Adding R223 which of course works in a totally different way, may be just the solution to get T improving even more. I truly hope so.

Now, how come you didn't call me to tell me you were going to be left home alone ...I would have come over and made sure you rested, I would have done all your cooking and even stood in for you on poop patrol. I would have brought Prosecco and my slippers and slept in the Conservatory with my friend Grace.

Tut tut. If that is on the cards again you call me is that a deal SS ?!!!

Turmeric T rides again !

all my love

xxx

User

Posted 05 Oct 2016 at 18:40

SS, Slippers and Prosecco now that is my idea of Heaven.😍

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Oct 2016 at 19:32

Well done to the pair of you, hope things keep going in the right direction.

Thanks Chris

User

Posted 05 Oct 2016 at 22:10

Wow, wow, wow.

What can I say, what a result, what a man! Julie, he is truly an enigma. Personally I think it's the aspirin. John takes a low dose with the stillbestrol and I think it has magical qualities.

Lots of love

Devonmaid xxx

User

Posted 05 Oct 2016 at 23:15

you are at a page end, I do wish we could sort this annoying thing out.

I will post this and hope it flips to P15 but in my past experience on your page it might take two attempts.

xxx

User

Posted 06 Oct 2016 at 08:08

IT didn't flip Mo so perhaps mine will. and yes it is very annoying

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

User

Posted 06 Oct 2016 at 08:14

Hi Julie

I am only posting to move your bloody page over http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Such great news so glad your onco is sticking with Abbi, brave lady

Hope to catch up with you before Christmas

Si xx

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

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