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Bone mets - please join in

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Re: Bone mets - please join in

Hello Stacey
Thanks for that ..often wandered the difference ..thought it was just a lingo difference. Mine will be cottage pie then. To be honest McDonalds would be a better option but ho hum better show my face in the kitchen at least once this weekend !!
Yum yr choc sounds very posh ..afraid I'm got the common tastebuds of "heroes" "roses" !!
Carolyn xxxx
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Carolyn, Glad the teeth feel better!

 

Just got a call from the onc I don't like! He said some areas improved, some stayed the same, and looks like there is a new area. He said he feels my regular onc would say stay on ibrance, so he is calling in the new orders. He considers me stable, but keep a close watch. He said scan in 3 months. This is when I miss my old onc who retired he would have walked over to the hospital and looked at the scan himself to see what they are talking about. I asked what he meant by new areas he said something  might be new. I have a new appointment to see her on the 19th if she is back. I figure one more round til I see her won't be too bad. He suggests scan in 3 months. He was vert vague, she explains better. I definitely still want to talk to her, when I can! FF

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Carolyn 

 

Clue is sort of in the name, sheperds pie is made with lamb and cottage pie is made with beef.  

 

I have just finished sweets given to me on Boxing Day.  A big box of coconut covered balls, possibly made out of white chocolate, filled with coconut cream and a whole almond.  Generally, I hate cream filled sweets but these reminded me of a sweet I loved when young called Almond Joy.  Maybe they are still around?  (My) resistance was futile.

 

 

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Hiya Jeanette
Yes jaw feels better today ..I'm petrified of the jaw thing as my teeth are awful ( chemo 2004 caused the problems) haven't got a decent tooth in my mouth really !!
Oh ..water infections are cruel ..think its a se of letrozole ..I buy cystocalm sachets from pound shop ..brilliant work ever so quick .
I like boots half price stuff too ...went next sale as I have vouchers but most of stuff was gone ..just bought a packet of knickers ..last of the big spenders today.
Just cleared our fridge of out of date food and bought fresh ...Not doing roast this weekend ..fancied cottage pie/ shepherds pie ( don't know what the difference is?) .
Sick of Turkey and ham ..ugh.
Carolyn xxxx
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Hi ladies, hope you're all enjoying Christmas!
FF, sorry to hear your appt has been cancelled, I know it's unfortunate for your onc to have the family emergency but I really do understand how that doesn't help your anxiety and worries regarding scan results! I hope the replacement onc shows a bit of compassion and care for a change!
Carolyn, how's your jaw lovely? By the sound of it (chomping on Terrys) it's feeling better! 😀
I'm sooo glad we flew home early from the Canaries, I've had a horrible water infection this week, fortunately antibiotics have got rid of it but it have been a nightmare to deal with over there!
Well I've been out shopping to Boots and done most of my Christmas shopping for 2017 in the half price sale!!! 😆😆
Off to the lake district tomorrow for a few days, hope you all have a lovely New Years Eve.
Hugs Janette xxxx
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Thanks moijan
For your input 're onj ..it's scary when you have old teeth like mine ...
I think I heard denosumab is causing more problems than other bone juice treatments especially after long term use.
Just don't understand how something that is supposed to repair the bones can cause such problems to the jaw ( and femur if you read the side effects)
Carolyn xxx
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Ps : FF ..I'm just sat here eating my daily Terrys choc orange ..thinking about your dislike of orange flavour !! Yum very nice it is too !
Hugs xxx
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Hiya FF
Phew that's a pain in the butt ..just as u were working yourself up to seeing oncologist too.
My oncologist who was also head honcho retired in May and I always saw her and felt in safe hands . Since then I have been seeing registrars etc and somehow don't feel the same. My next onc appointment is 10 Jan so will be interesting who I see.
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Not ending and starting the New Year on a good foot!! Greeter just got a call cancelling my Jan 5th appt. My oncologist had to fly to India for an emergency with her dad. I'm sorry her dad isnt well but this makes a mess for me. We did my scan at 3 months instead of 6 bc something showed up on my scan that they couldn't tell what it was. This appointment was to decide if I could continue on ibrance. Secondly I'm out of refills and needed her to out in orders for more if I'm going to continue with it. There is another oncologist, but I don't like him. He will walk right past me and not even say hello unless I say it first. I'm going to have to speak with him. They are having him call me today. I might have to make choices of a new plan with him. Not happy about this. Hoping Ibrance is working and I won't need to make a choice. Grrrrr! FF

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Hi Carolyn,

 

i saw my dentist over a worry about two weeks ago and mentioned a froend was worried about jaw necrosis...he said that usually  it doesnt hurt( his was the first patient in the country to have itwhilst on Zometa)

he also said  its extraction's that are best avoided and fillings should be ok.

 

oh, the other thing is...the lady who did have onj, after she came off zometa,her jaw grew back again. My dentist has been practicing a very long time and is well respected.

 

i hope that helps a bit?

 

love, Moijanxx💚💚💚

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Thanks Julie for your information ..it's always something to keep us on our toes !!
My oncologist was nervous at putting me on it and delayed it three months whilst I had a couple of teeth extracted from the beginning.
Hopefully ..it's going to settle down .
Xxxx
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Racer I  hope your temp has settled and treatment went ahead.

 

Carolyn the work you had done should be ok so maybe it's a nerve thing going on? The other alternatives are Zometa (Zolendronic Acid) by infusion,also Pamidronate by infusion or there is Ibandronic Acid (Bondronate), and Clodronate, both of which are oral but need to be taken sitting up or standing and on empty stomache with time after before eating/drinking. The preferred treatments at the mo seem to b Denosumab and Zometa. Unfortunately all of the available treatments seem to pose the threat of ONJ.

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Hello ladies
Ever since I have been on denosumab injections I have feared the ONJ risk as I have terrible teeth. Last week I had a front filling replaced ( no invasion just gentle dentistry) and since I have tingly teeth and my jaw feels really achy ..even up to my nose .I'm seeing oncologist in 10 th January and will chat to him ...how common is this ? Also if the denosumab is causing this what alternative bone strengtheners are available with less side effects ?
Carolyn xx
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Hope everyone has had a lovely Christmas and best wishes for the New Year.

Had an overnight stay last Thursday as had a high temp. Felt I was wasting their time as antibiotics were changed that day so can't start Chemo tablets .

Being reviewed tomorrow and hoping to start Meds . Guess what temp is playing up a bit . Always seems to be in the evening . Don't know why ? Just want to get started .
Just keep eating the chocolates . Trouble is kids always leave the horrible ones !

Hopefully 2017 has got to be a better year xxx

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Hiya bel
I do hope your scan soon gives good results as the hormonal treatments are do able compared to some of the chemos !! I also hope that leyrozole keeps working for me ..it's been 15months now and its going to stop at some point but fingers crossed.
Faslodex is a very expensive one that isn't given that much so try to feel confident that its doing its job !!!
Hope your injection site is getting a bit more comfy now .
Hugs xx
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Thanks for reply Caroline and Stillhere, feeling slightly better this afternoon, I was the same as you do I rub it or not! Nobody said not so have massaged a bit as as very lumpy! The side effects I have had are very similiar to their hormone therapies hot flushes , joint aches etc! 

As I had primary 11 years ago and recurrence 5 years ago I have had all oral hormones, arimidex, letrozole and examestane, so have had too move on to the jabs! Oncologists hope this will hold it at bay for a while before I move on to other treatments! Scan on 11th, hoping for a positive result!!! 

Bel x

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Hallo everyone, it's a beautiful sunny but frosty morning here, hoping it's the same where you are.

Bel, I had faslodex injections for a few months earlier this year, I think it's the skill of the nurses in giving them that counts! I always lay on my side so was relaxed, and made sure they were given very slowly as the liquid is apparently quite thick and viscous. Also I massaged my injection site afterwards which helped but I later read that it might disperse it too quickly. Who knows?! Hope you are soon feeling less painful. I loved my few months on hormone treatment, no side effects, bliss!!

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Hello bel
Wow you have been busy moving to a farm ..never any spare time for you as there will be loads to keep you busy.
As far as faslodex is concerned ...I haven't got any answers and I don't think a lot of ladies here take it but marirose has been on it for a few weeks so hopefully she might be reading and able to help you. Most of us hormonal ladies here are on letrozole !!
Hugs xxx
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Hope everyone enjoyed Christmas festivities, it's hard sometimes to put this awful disease out of your head and enjoy yourself but I'm sure that most of us tried our hardest! We enjoyed our first Christmas in our new home on a farm, lots of walking outside in fairly cold weather but sadly no snow! (Don't suppose that will ever happen as we also are on the south coast!! )

Yesterday had my 5th faslodex injections, all previous went well, but yesterday's has left me with two large painful lumps at the injection sights, both sides are really painful and legs are aching! Has anyone else experienced this, not sure whether it's just a build up or what? 

Other than that Happy New Year and thank you for welcoming me to this thread! Bel xx

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Janette, I'm sorry you would have rather been home instead of vacationing. I know I wouldn't like going away for the holidays. I can't even convince myself not to cook and go to a restaurant. I enjoy all our traditions too much. I'm also a bit of a homebody. Lately I don't enjoy going away with how I feel. FF

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Oh dear, that was a roten experiee but you've done it now and no need to repeat - the Lake District will be lovely and next Christmas will be even better because you'll appreciate that deep down you dolike our hectic  Christmas traditions. Enjoy your mini holiday xx

 

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Oh Jeanette
I'm so sorry about your holiday ..what rubbish and probably a very expensive mistake too.
We went to lanzarote for Xmas many years ago ..missed my kids and felt cheated out of all the things that I thought I hated at home like rubbish films , cooking Turkey which I don't eat and slogging whilst the men folk sit around farting and burping !!!!
Carolyn xxxxxx
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Hello ladies, I hope everyone has enjoyed the festivities, eaten plenty and had a few cheeky drinks!
Well I've had an eventful one! Flew to Gran Canaria with hubby on Thursday for a week of Christmas sunshine (something we've always fancied trying) anyway we fly home early! Got home last night, the weather was rubbish, the hotel wasn't much better and not many happy faces in the hotel! Plus really missed being at home cooking a Christmas dinner etc. Oh well we've tried it and it's definitely not for us! Off to the lake district for the new year so still got that to look forward to 😀
Hugs Janette xxxxx
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Hello ladies
Just popping in and hoping everyone has had a lovely Xmas ..ate drunk and been merry....the reality of this disease hopefully forgotten for a few days.
We have had a frost here in night and everything looks white but Sun is shining through and its all very pretty.
Xxxxx
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Merry xmas everyone
Hope you all enjoy a lovely day ..Sun is shining here which is a real special treat.
Xxxx🎅🎅🎅🎅🎅
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Hi everyone, am just back from church. And sippng my boiled milk.

 

have a wonderful day.....all of you. And some of us will be spending it alone...much love to you, chip in and let us know how you are getting on.xx

 

Moijanxx💚💚💚

 

💝🎈

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Merry Christmas and a very Happy New Year

Loads of love and ((((hugs))))  xxxxxx

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Happy Christmas everyoneUntitled-1.jpg

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Happy Christmas, everyone, and wishes for a better New Year to everyone! May new treatments come (and be approved by NICE!), and prove successful for all cancers, not just ours.

 

Hugs. Barton.x

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Wishing you all a very Merry Christmas xxx every year I am convinced it will be my last (fifth Christmas with cancer). Will dust myself off of course - don't forget your sprouts ladies (dipped in chocolate if necessary!!) :0) xx
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Merry Christmas everyone from Gran Canaria!
I wish you all a happy healthy New Year.
Hugs Janette xxxx💖🎅
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Happy Xmas everyone
To everyone reading ..lets all hold cyber hands and make a wish for a magic bullet treatment for all of us in 2017 .
🎅🎅🎅🎅
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Wishing everyone on the forum a comfortable enjoyable Christmas, may you have peace and happiness and hoping for a postive New Year.

Love and blessings everyone xx

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Merry Christmas everyone and Happy 2017. Bandit xx
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Happy Christmas everyone!! 

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Merry Christmas everyone. Hope everyone gets lovely pressies and has a peaceful, happy day. lots of love xxx
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Merry Christmas all! Enjoy the festivities! Especially enjoy those you are with, and those you love that are far! Peace to you! FF

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Hallo All I have been offline for a while taking a break but I wanted to wish everyone a very HAPPY CHRISTMAS! It's a poignant time of year for us but hopefully an excess of favourite tipples.....Prosecco in my case.... and chocolate will see us through!!! Love to all.     Stillhere xxxxx

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Hiya moijan.
Although tooth fixed ( ish) I will be limiting my chocky intake ..one terrys chocolate orange per day !
Yes ..lovely sign in name chocolates ...wish I had thought of something more adventurous .
Hugs xxxx
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Thank you Carolyn, I do hope they have some comfort over xmasxxx

 

did post that I was pleased you sorted your teeth...on some other thread, not sure even who I am at present!

 

anyway, have a great xmas and will be checking inxx

 

hi Nicky and also Chocolates.....be very careful with a name like that...Carolyn is quite obsessed with chokky, you might find she sneaks up and bites an ear off, just to taste!

 

love and hugs to all

 

 moijan💚💚💚

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Hello
Just to add I had a lovely text back from Ellies hubby thanking us for all our kind wishes . He says her young son is coping very well with Xmas being on the doorstep so hopefully with a good support of family and friends they will get through this hard time .
Carolyn xxx
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Hello chocolates
Hello and nice to hear from you ...hope u are keeping well ( ish) .
Happy Xmas everyone and remembering all the ladies we have lost this year to this evil disease .
Carolyn xx🎄🎄🎄🎄🎄
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Morning all mets ladies (including Chocolates 😊), just wanted to wish everyone a Happy Christmas and hope you all have a wonderful time with your families. Thinking, of course, of those who are no longer with us and their families.

Take care

Nicky x

 

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Hello ladies.  I've not been on for ages.  Just taking a break.  However, wanted to come on and wish you all a happy Christmas and a peaceful new year.  You are always in my thoughts and I think of you all every day.

 

lots of love xxxx

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Carolyn so happy you found a dentist who  could help you! A toothache for Christmas would have been bad!

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Oh gosh Carolyne, the thought of Christmas without chocolate!!Cat Surprised

 

Glad you got it sorted, yes watch out for toffees.

 

Injections and fillings should be ok, it's extractions that are the big worry.

 

Hope you have a good Christmas. xx

 

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Good evening everyone. So pleased that you found a dentist Carolyn.
Hope that you are all as ready as you need to be for Christmas.
Our son and his partner are arriving tomorrow and bringing everything they will need to do our Christmas meal, including starter, pudding and pans (he prefers his own). They live in a small one bed apartment so he's looking forward to having a larger kitchen. They insist they're doing everything including setting the table so I will have a lazy day, hubby always washes up on Christmas Day.

Looks like I will have to open the sherry at about 10.00am.

Hope you all have a good Christmas and keep as well as you can

 

x

 

 

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Yes Barton ..that would have been tragic to me without my chocolate ..but I will avoid the toffees I think !!
Hugs xxx
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So glad you are sorted, Carolyn - nothing worse than the prospect of not being able to eat properly at Christmas! Horror of horrors - the possibility of no chocolate!

 

Hugs. Barton.x

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Thanks Barton.
Found a lovely dentist in topsham ...he's done a neat filling and matched it to my existing teeth too. Has never heard of onj problems with denosumab so I was glad I had my leaflet with me. I need to ask oncologist if I can see hygienist also and need another couple of fillings in New year ..old teeth . He said how important it was to have well maintained teeth ( at his prices !) So immune system doesn't have too work so hard on gums and mouth and can concentrate on the cancer problems.
Happy Xmas xxx