Advanced prostat cancer part 2

User

Posted 06 Oct 2016 at 11:49

sorry that Dah Dah didn't quite hit the spot but this one will

DAH DAH

Edited by member 06 Oct 2016 at 11:51 | Reason: Not specified

User

Posted 06 Oct 2016 at 22:21

Double Yay over and out thank you SS , when will this ever get sorted . 😜

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Oct 2016 at 09:46

xxxxhugsxxxx. xxxxhugsxxxx

What more can I add!

xxxxhugsxxxx
Chris.

Always in our prayers.

Edited by member 07 Oct 2016 at 09:46 | Reason: Not specified

User

Posted 20 Oct 2016 at 22:00

Oh Guys just a little update and in the grand scheme of things not a Mahoosive problem but a problem none the less. I have never seen another post on here with this particular problem so if any one out there has heard of it or can give some advice I would love to here from you. Actually if you just want to send me a hug I would love to here from you. Not that I am desperate for hugs you understand.😜

Ok so Trevor has had quite a few abscesses in his gums over the last probably 10 months or so he has seen the dentist regularly and had oodles of Aunty Bs any way upshot is he has got Osteonecrosis of the Jaw caused by his Zometa infusions.

This is a side affect of the Zometa although I have to stress not a common one, they want to take all of his teeth out , actually need to take all of his teeth out , he has got extra bone growth in his gums that is loosening the teeth and allowing gaps to happen hence the abscesses.

The problem being it is not a good idea to take his teeth out while on Zometa and guidelines are a break in Zometa for at least 6 months prior to any dental treatment let alone every tooth extracted.

Trevor without Zometa would be a disaster so not really sure what will happen here.

Trevor is really low he has always been quite vain and I know with everything else he has faced this is not the end of the world but he has taken it really hard. I suppose it is just another ride on the roller coaster and we WILL weather this storm , but hey FFS (hope I get away with that one)

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 20 Oct 2016 at 22:13

Oh Julie, how horrid! As if they cancer it's lf wasn't enough to contend with .... it would be my nightmare, as I hate having dental work done. Tony's cancer was in his jaw and I was worried it would be painful, like toothache, but in fact the opposite happened and his face went numb, and a bit swollen.

Sorry, this is no help to you at all, all I can offer you and Trevor is heartfelt sympathy.

User

Posted 20 Oct 2016 at 22:20

Marje,

How can I say thank you enough for replying after what you have just gone through.

Xxxxxxxxxxx

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 20 Oct 2016 at 22:28

Oh Julie, I am so sorry to hear this about Trevor's latest (and so unfair) blow.

Who wouldn't be absolutely gutted to have to face this?

You can have a big warm, daft Geordie hug from me, and for Trevor, a big man hug, anytime.

Bloody'ell, I'm stunned about this development.

Over the years I've seen hundreds of guys here given Zometa.

Very many, and Allister was one of them, swore by it. They found it helped enormously.

Some did much better than others, but over all this time I have NEVER seen a post from anyone suffer Osteonecrosis of the jaw, even though it's always been listed as a scary side effect of the drug.

It's just not right that you have to go through all this now, after everything else.

Warmest wishes to you both,

George

B2PCa

User

Posted 20 Oct 2016 at 22:54

Thank you George,

Just googled the proper response to a Geordie hug.

And so WEY AYE MAN.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 20 Oct 2016 at 23:05

How awful for you both! As if you don't have enough to deal with. Presumably this will have to be done with much discussion between dental and onco for the best way forward? And hopefully they will be able to sort some replacements asap.

I know this is no help but it might make you chuckle... David woke up one Sunday with terrible jaw pain and unable to open his mouth. I had read the Zometa leaflet and was panicking about osteonecrosis. So Monday morning he saw the doctor and was referred for an urgent scan of his jaw which was completely clear. It resolved quickly and the only conclusion we could come to was that he had been to see a Beatles tribute band on the Saturday and that he had sung along so enthusiastically he had seized his jaw up!

Big hugs to you and I do hope they get it sorted quickly

Rosy xx

User

Posted 20 Oct 2016 at 23:25

Julie sorry to hear this. This disease is a bxxxxxxd. I have no advice but I Spose you will have to discuss with the oncol about the possible stopping of zometa and what plans can be put into place.

Sending a big ((((((((HUG))))))))

Bri x

Edited by member 20 Oct 2016 at 23:25 | Reason: Not specified

User

Posted 21 Oct 2016 at 00:02

I am devastated for you - what an awful situation

I wouldn't normally but just this once, loads of {{{hugs}}}

Love Lyn x

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

User

Posted 21 Oct 2016 at 08:17

Julie,

Sending you a big "Hug".

Steve xxxx

User

Posted 21 Oct 2016 at 08:28

F King hell! That is a horrible catch 22 situation. I fervently hope a solution can be found.

David

User

Posted 21 Oct 2016 at 08:35

If he didn't have enough to contend with, now this..............

xxxxhugsxxxx

Chris

User

Posted 21 Oct 2016 at 09:53

So sorry Julie.

(((((((((( H U G S )))))))))) (That's meant to be a big one so you can share it with Trevor - though he might be a tad frightened being enveloped in a hug by a strange woman !!!

********

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

User

Posted 21 Oct 2016 at 09:58

(((HUG))) from me too Julie...

KRO...

User

Posted 21 Oct 2016 at 10:25

Elaine and I felt so upset for you both reading this before we went to bed last night. It's just all so F'ing horrible !! Thinking of you xx

User

Posted 21 Oct 2016 at 12:13

Hi Julie

Maybe a hospital specialist dentist(I think a maxilla/facial specialist) would look at Trevors case and not necessarily expect to wait 6 months post zometa.

All cases and specialists opinions as you know vary so maybe there will be a more acceptable option to what you think.

Sending you a big hug Julie, take care.

Lesley xxxx

User

Posted 21 Oct 2016 at 20:15

A Huge Thank you for all replies I so love you guys.

So of course I have googled in fact they have offered me a job in admin😉 . I have come up with a Japanese study which is strange because there pca incidences are low compared to other country's . So little is known about ONJ that any treatments are not one hundred percent proven .

So any way Prof Yaki Namo ( I made that up because I didn't actually record his name ) but it sounds similar suggests that treatment with an antibiotic called Sitafloxcin is giving huge benefit , has any one heard of it ?

Apparently surgery isn't a viable option because the bone has died hence the Necrosis side of Osteonecrosis so not something I would be happy with but maybe a long term antibiotic is an option .

Of course nothing is set in stone until we see the Wiz in Nov , honestly I don't think stopping Zometa is going to be an option but I have to trust the Wiz and of course Trevor he has defied all odds so far . He is a bit more upbeat today , I really don't know how he bounces back he has an amazing capacity to block bad news , he is not in denial and with each blow he gets down but some how and if only I could bottle it he manages to put it behind him and I just follow his lead . I know this sounds crazy but cancer is not on our daily agenda.

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 .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 Oct 2016 at 20:48

Keep going girl and big hugs. Don't know how you all keep going.

Thanks Chris

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

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

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

User

Posted 29 Nov 2016 at 22:44

So sorry to hear your latest update Julie - and awestruck by your ability to make the rest of us smile even as you are going through such a stressful time. Your posts are not long-winded. They are a wonderful testimony to you and to Trevor, what an extraordinary couple you are, poop, hairy legs and all!

The comfort blanket did its job (thank you so much for sending it)...I've sewn some tinsel round the edge and it's on its way back to you right now, with love and appreciation.

Love

Eleanor xxx

User

Posted 29 Nov 2016 at 23:44

Sorry to hear things are not going so well. Here's hoping the radium will do it's trick.

Just a thought re the leg hair - don't you have a fancy lawn mower???

User

Posted 30 Nov 2016 at 00:23

Brilliant!

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

User

Posted 30 Nov 2016 at 07:15

Aw Julie, we definitely feel for you right now, sending BIG HUGS.

Always in our thoughts and prayers that you can get through Christmas 4 unscathed.

Any more puppies due before the new year?

Best wishes all.

Chris. xxxxhugsxxxx

User

Posted 30 Nov 2016 at 07:49

Julie

Bugs hugs from me and keep going girl.

Thanks Chris

User

Posted 30 Nov 2016 at 21:40

Julie your messages are so amazing. I really hope the appointment goes well and you get some help for the eating probs and breathlessness.
Wishing you both the best possible festive season you can have x

User

Posted 30 Nov 2016 at 22:24

Sending lots of hugs to one amazing lady.

Fiona. xx

User

Posted 01 Dec 2016 at 08:04

Hi Julie

You are not painting a pretty picture http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif the description sounds nothing like the lovely lady i have met many times.

So as we both approach our 4th Christmas with this bloody disease who would have thought it.

Hope Father Christmas is bringing Trevor plenty of Turmeric http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

The girls all send there love

Si xx

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

User

Posted 01 Dec 2016 at 11:30

Dear Julie,

You'll probably go mad at me for saying this, but if ever I'd put a lady on a high pedestal it would have to be you.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

The comments above are spot on. 'Awe struck' is certainly how I feel when I read some of your posts

For so long now, despite the terrible situations you and Trevor have faced, you've somehow managed to to bring not just a smile to us, but some completely LOL & 'Spluttering Out Tea' moments.

Coming up to your 4th Christmas of the battle, (along with Si), may I wish you and Trevor the best one ever.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

And get him to keep taking the turmeric (I swear by it, having about 6 tsps of it plus the same for ground cumin, in my veg juice then grinding in black peppercorns to complete the mix).

YOU ARE ONE VERY SPECIAL WOMAN!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Warmest wishes to you both,

Always,

George

B2PCa

User

Posted 01 Dec 2016 at 20:10

Hi Julie

Wishing you a belated very happy 58th birthday, you should have asked for a razor for your birthday. Perhaps you could put it on your Santa list!! Or even what the heck, it's more important to be beautiful on the inside than the outside which I believe you trully are.

Really hope Trevor gets on ok with the radium treatment and that his BP/chest pain/breathing don't cause too much of a problem.

Take care Julie

Lesley xxx

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