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
B
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

J

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

Thanks Chris

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