Advanced prostat cancer part 2

User

Posted 21 Oct 2016 at 23:08

" Could it be Trevor's attitude, his aspirin habit , his Turmeric addiction or just his amazing ability to defy the odds that keeps him going . "

Or just the fact that he won't give in and let it beat him and who can blame him, he has a lot to fight for.

SitaFloxin is one of those fluoroquinolones. like Ciprofloxacin that can cause problems but knowing Trevor he'd kick the a**e of the side effects!!

*****

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

User

Posted 22 Oct 2016 at 09:15

I don't know Trevor well but I share his struggle with a disease that we can resist but ultimately cannot defeat. I think there are many ways that individuals can go in dealing with this inevitable if reluctant decline. I think Trevor and I know as will others on here, take the view that a single focus on the disease itself can be self defeating. Do what you can whether it be taking turmeric, or aspirin or conventional hormone therapy etc etc but then try to normalise your life as much as you can. By doing this I think you help those around you to make sense of this senseless challenge.

I know others will worry for me and I appreciate their dedication, as I am sure Trevor does for your wonderful support, Julie. I will in the meantime try to get on with my life, I never forget what the ultimate outcome is but there is plenty to do in the meantime. I have spent nearly five years doing that and am still here, likewise Trevor rolls forward, long may this challenge be met with life affirming actions.

User

Posted 22 Oct 2016 at 17:49

Oh Julie,

I simply don't know what to say. One thing is for sure, you and Trevor and your family are in my prayers. My oh my, dealing with cancer is one thing; to deal with several other complications, sounds like a nightmare.

As others have said, take care of yourself Julie. I truly hope an answer can be found to your latest complication.

Frank.

User

Posted 23 Oct 2016 at 09:31

Sending hugs from me too. What a b***** to have to deal with, the dental complications I mean. Lots of research and discussion needed but you are already doing that. xx

Fiona.

User

Posted 23 Oct 2016 at 12:47

So sorry to hear of another blow, sending you good vibes right now.

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 23 Oct 2016 at 17:13

Julie my SS
not good news for poor Trevor at all. I know the Wiz will have some thoughts on this. There definitely needs to be discussion between her and the dentist first. I would suspect that she would want any treatment at all to be carried out in the special dentistry unit at the hospital.
I haven't heard of the condition being slowed down or stoped with antibiotics though, it seems an odd idea when the cause is chemical rather than bacterial. I would have thought the ABs are to treat the abcesses not the underlying problem?
So sorry you have yet another trauma to get through. Big hugs from me

xxxxx
Mo

User

Posted 01 Nov 2016 at 23:05

Ok Guys so here we are Christmas is just around the corner and this will be Christmas no 4 since diagnosis you all know I never thought for one minute that we would celebrate that first Christmas let alone number 4. So bring on the tinsel. 🤗

So scores on the doors PSA 00.01 😂😂😂😂😂😂 that had you all going I have just wanted to say that for 3 years.
Ok the real score 2,530 so yes up but there is always a silver lining it's not up as much as last time and I just posted to Sallyyy this is such a strange disease and I really have to pinch myself because who in there right mind would be happy with a just over a hundred rise in a month. Well I can honestly say we were .

Back to reality awhile ago I posted about 3 wheels on our wagon well I think we are down to two and a bike pump Zometa has been discontinued until further notice due to the Osteonecrosis . Trevor has been referred to just about every dept known to man and a few that haven't been invented yet. Know one really knows what to do with him (no comments). Nothing can happen until the Zometa is out of his system so it could be two months , could be six months , could be a year . So a rock and a hard place but hey Mr Turmeric is not known for giving in without a fight.
Basically they would have to remove all of his teeth and then file the bone that is growing in between and it seems to be growing quite quickly, I just want to say for anyone just about to start Zometa that this is a very rare complication and he has been on it for just over two years.

Is there any good news you are all thinking well of course there is, Drum Roll Please! Mets in his hip have reduced ( don't ask I know it's crazy) PSA rising month on month for over a year and yet a decrease in his mets in his hip that good old saying WTF springs to mind. (Please don't moderate me) 😆

Si Superman and Turmeric Trev you both just continue to defy the odds and spin pca on its head.

Also appointment to start Raduim 223 is here and due to commence (this is where the bike pump comes in) on 22/11/16 and again another drum roll Abbiraterone to continue along side the Raduim.

So 2017 here we come. 😉

BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 02 Nov 2016 at 08:29

Great news Julie http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Jamie was trying to get me on 223 and Abbi i will be watching with interest

Tough call on stopping zometa i so need some dental work but its the same with Denosumab need to be off for 6 months.

if those mets keep shrinking i might need to look at dumping the fosters trial and jumping on board the turmeric trial instead.

Ness and the girls all send there love,

Si xx

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

User

Posted 02 Nov 2016 at 17:22

Julie my SS
Everything is under control by the sound of things. Well as much as it can be on a roller coaster!
Trevor has met reduction but higher PSA has he OD'D on turmeric????
Your 4th Xmas since diagnosis, WOW and last time I saw Trevor he was looking better than he did when I first met him!
I had a chance meeting up and coffee with Devonmaid today, 5 years plus for them. John is much improved following stent removal.

Great news about radium+ Abiraterone maybe they will bring that PSA back down.

Love to you and yours as always

Xxxxx
Mo

User

Posted 02 Nov 2016 at 21:00

Si I wouldn't change a winning formula if I where you so stay with the Fosters but switching to roll ups and adding some Turmeric might be a good compromise we could call it chasing the Dragon. 😆😆😆😆

SS I know I don't understand it myself and neither does the Wiz she is as gobsmaked as we are none of it makes sense , rising PSA in the thousands and a reduction in mets how crazy is that. The last scan 6 months ago showed a worsening in the Mets and the PSA is know over 1000 higher and yet the mets in his pelvis are reduced. How does that happen ?

The Wiz called him an Enigma let's face it if she can't work it out then there is no hope for the rest of us . She has also never seen a case of Osteocrenosis and admitted that Trevor's starting PSA and the length of time he has survived she has never witnessed before. For me it just goes to show that we can put all of the data on paper and come up with statistics and then certain people chuck those statistics straight out of the window..

It reminds me of a few years ago a friend was having trouble with her dog going into labour and she quoted the signs from a book that she had read and couldn't fathom out why she was acting differently from the book . I simply told her " your dog can't read and so she has never read the book".

BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Nov 2016 at 13:31

Only just come accross this post. I was diagnosed with necrosis of the jaw back in 2013. I was just attending for a annual checkup. I was referred to the dental hospital where they promptly removed all my top teeth. And a set of dentures fitted. I have had very few problems since. The consultant who treated me was aware of all the treatment I was receiving at the time, including Zometa. I made her aware of the fact that Zometa is stopped in the case of Necrosis. She said 'we can wait 3-5 years for it to leave the system or we can proceed now and take a chance. I asked what she thought my Onco would say, her reply was 'don't tell him'. So we took a chance and 3 and a half years down the line I have had only one problem area. As a result of shrinking gum lines my jawbone was protruding through the gum. I was referred to a Professor at another hospital who's approach was to remove minimal bone and let it heal itself. I take 100mg of Doxycyline daily and have done for 3 years or so. I also still have my Zometa, Zoladex and of cause the Abby tab and steds. My psa is 3.2 , a nice drop for me after hovering around the 12-14 mark for a long time. Oh, and my Onco still doesn't know ! Bone scans show it as dental decay.

Nec Aspera Terrant
Difficulties Be Dammed

User

Posted 13 Nov 2016 at 18:56

Wow, like a voice from the Gods! Great post lfcuk

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

User

Posted 14 Nov 2016 at 20:03

If*** thank you for your post it is much appreciated so little is known about it and I have been trying to find someone with first hand experience so again Thank you. It just shows why this forum is so brilliant.

Trevor has seen the specialist and as predicted they are very reluctant to remove all of his teeth, however some are now so loose that they have to come out . The plan at the moment is to remove those teeth that are about to fall out anyway he was started on long term antibiotics 2 weeks ago and Zometa was discontinued from 6th Nov. They are planning to go slowly for the moment and see how it heals before proceeding. Got to be honest though eating anything harder than soup is difficult for him.
I have tried copying and pasting your post to show the Wiz but wasn't very successful if any one has any tips they will be greatly received. 😉
If not I will have to take my iPad.😄
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Nov 2016 at 20:28

Julie if you get lfcuk's post on to your iPad screen and then press in the round button next to the screen and the side button at the same time, it will take a photo of it which you can then print off perhaps?

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

User

Posted 14 Nov 2016 at 20:32

I would just like to thank a certain person for emailing me the post . I won't publicly name him but his name starts with S and ends with S he has been known to wear a cape every now and then and takes a pretty mean photo scan photo 😘
BFN X
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Nov 2016 at 06:30

Just back from my hols Julie and yours are always the first posts I look out for. Good news (well some of it) for Trevor. Yay!

As you say, this site is brilliant for help and support. Somebody always knows the answer or where to find it, so Ifcuk's post was brilliant.

As for the caped crusader, well - it's what he does innit !

******

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

User

Posted 28 Nov 2016 at 22:40

Hi guys,
Oh what a busy few months my bum has not touched base since July 😆It has been non stop and I am exhausted . Just had my big 58 Birthday and a certain someone suggested that I should take time out to shave my legs ( not that she has seen them) .i am pretty much Ware wolf status know in fact they have to open the double doors in oncology just to get my leg hair through. 😄I used to be so glamorous and now I am covered in puppy poop and consumed with pca. Life in the fast lane eh .

A Huge Thank to you to all that take time out to reply , I know my posts are pretty long winded and I have been going on for ever , well not quite ever just over three years which is pretty amazing fromwhere we started.

So Xmas tree is up I know i am a Chrisaholic , Harrods have requested my services but i have told them I am far to busy .

Life it's a bit of a clunker isn't it so positives .
Raduim starts mid Dec

PSA now at 3500

Breathless and chest pain has reared its ugly head ( we need to monitor closely)
Bp is up for the first time in over a year.
Forgot to add the Necrosis is causing Trevor to be really miserable he can only eat soft foods /soup / mashed foods etc . We are waiting for an appointment .

Love to all
BFN
Julie X

Edited by member 28 Nov 2016 at 22:45 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

User

Posted 28 Nov 2016 at 23:18

Oh lovey, this is not the update I hoped to see - lots of things for you to worry about. But another Christmas looming towards us - who would have believed it when you look back at that awful one a couple of years ago??? Fingers crossed the Radium knocks it back again and a solution is found for his teeth.

I didn't need to see your legs, I just knew by osmosis x

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

User

Posted 29 Nov 2016 at 07:44

Girl in blue dress ?
Manky hairy legs ?
Killed the moment Julie totally.
I so hope despite it all you can glean some pleasure from each other this Xmas xx

User

Posted 29 Nov 2016 at 08:56

Hope you get something from the season Julie, although it's a double edged sword eh?

Our daughter is another Chrisaholic. Her tree was up a week ago. She ways it's because she knew she was away this week and busy next! Yeah, right!. I'm sure it would have been up anyway.

Good luck to Trevor for mid December

PS On a positive personal note for you. Think of the warmth that extra hair is generating!!

Best Wishes

Sandra

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

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