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Advanced prostat cancer part 2

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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

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