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Bone mets - please join in

Carolyn52
Member

Re: Bone mets - please join in

Ha ha
The lonely bauble is the same enigma as the teaspoon always in the bottom of the washing up bowl isn't it ? ( I don't have a dishwasher ..well it's hubby !!)
Let's start a club for the elusive bauble that gets binned after everything else has been put away !!! " the unwanted bauble that Xmas forgot"
☺☺☺☺
funnyface
Member

Re: Bone mets - please join in

Carolyn, I haven't done that with the ornaments bc we don't carry those to the attic until the tree is outside! Now, the decorations that I have around the house are a little different, because I let them out a few days longer. I always find something I missed. I do stick the missed item in the bottom of my China cabinet until the next year. Not climbing in the attic for one thing! It's like me packing a suit case, always miss something! FF

stresshead
Member

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Carolyn, cant believe it, the same happened to me!!! I just lifted the lid of the nearest box and shoved it in so it will probably be lost forever anyway.!!x

FF, what a pain about your onc appointment. The limbo time is the worse isnt it. Lets hope like last time the 'something new' wont be anything at all. xx

Love and best  NewYear wishes to all

Carolyn52
Member

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And ......why when you carefully take all the baubles/ decs off the tree ...carefully put them all away in boxes in garage/ attic you start dismantling tree ...do you find one lonely bauble you have missed. Do u add it to the others or b......it and stick it in the bin !!

👍👍👍
Carolyn52
Member

Re: Bone mets - please join in

Thought for the day:
Why is it fun putting up the Xmas tree and decorations but a real chore taking it all down again and cleaning up ?
🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄
Carolyn52
Member

Re: Bone mets - please join in

Hello racer
How are you today? Hope things are improving for you. Things always go wrong over weekends and bank holidays when support is limited.
It's been quiet here on this thread ...where is everyone ? Come on get out of your pjs and duvet and spring into life again ...it's 2017 now .
New year hugs xxxx
racer
Member

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Hi everyone, my naughty high temps are still ongoing. It seems to go high during the evening especially night before a Onc appt. Went for review after repeating myself several times I am still having issues with high temp he said I can't start treatment. He said I needed another blood transfusion which I had yesterday . Inc would not prescribe anymore antibiotics and said to see what happens .

It is already gone to 38.1 so had paracetamol to see if it settles again . I darent ring the Hospital as they will tell me go in . My hubby is working nights tonight and tomorrow night and is worrying over his job. I can't leave my youngest son at home. It is a vicious circle feel I am not getting anywhere. Sorry rant over.

Hope Ff you get to see your Onc soon . I am the same the one I see from the team is vague and won't make any decisions. Don't think he likes me questioning him .

Thank you for all your continued support and advice . Thinking of everyone and hope everyone has a peaceful And a better New Year .xxxx

funnyface
Member

Re: Bone mets - please join in

Happy New Year Ladies! Hoping we all have some special things to look forward too. I've been working on a secret plan for our 35th wedding anniversary in May! Budget here is extremely tight, but a friend has a house in Florida and I have arranged with her to borrow it. We will drive, I'm afraid to fly! The few times I flew my ears couldn't take the pressure and won't pop. They hurt for 3 days and I couldn't hear!  I have reserved a rental car, bc our cars are old with a lot of miles.  I'm excited. 

 

Carolyn, I have a mouthful of old teeth too! All molars have root canals and crowns. I lost 3 last year! Luckily you can't see them!

 

Moijan, Yes my onc is a lady and she was new last January bc my previous onc of 20 years retired. I really do like her, actually better than my previous one. I will say my old one would walk next door to the hospital if he didn't like something  the radiologist said. He would pull the CT's and look at them with the head radiologist. He would do this during your office visit. He would say I will be back, I want to see these myself. He often said that the radiologist report any little changes that they think they see. Many times him and t e head radiologist felt there were no changes. I'm wondering if this is the case. They reported something new last time and this time, so we shall see.

Bousy
Member

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Hi my name is liz and have had secondary cancer since sept 2015. Now have it in right shoulder, right pelvis and just found out vertebrae of the spine. Just had radiotherapy to see if it will ease pain in spine as it is putting pressure on nerves of left leg. Also have in lungs and liver. Just started cycle 4 of capecitabine.
Any hints or tips.
Liz x
Moijan
Member

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HiBonaresis....hugs to you , get better soonxx

 

Ff, hang in there.....hopefully things will even out a bit soon...good they are keeping up the same meds till your lady onc gets back( did I understand that correctly?)

 

moijanxx

Moijan
Member

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Hi Carolyn...I have a mouth of awful old teeth too, but I nip into my dentist asap with all sorts of tiny worries

 

. He is excellent and as he was the first dent ( in the country) to have a lady with onj, I feel very confident with him. As I said, that lady who ever she is...her jaw is now growing back! So thats a blessing.and he really did

Tell me that onj doesnt usually hurt and that fillings are usually ok, so I feel confident about that.

 

he has said that if I ever need a tooth out....off I will be sent to the hospital.( my onc said that the dental dept often find that they can save a tooth) which is a nice fall back for me.

 

enjoy your choc orange.xxx

Moijanxx💚💚💚

Carolyn52
Member

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Hiya B.
Sorry you are poorly and with active grankids too ..not easy.
I hope your hormone therapy keeps going though ..we all fear when it stops working and have to move to the big guns stuff !!
I have my grankids here too ..they are like walking germ machines for bugs and we are like magnets for catching them !!
Carolyn xxxx
bonariensis
Member

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Hi Funnyface  Hope you get to see your treasured onc on the 19th. Hang in there.It's amazing the difference between different oncologists/consultants. Some make you feel better others worse. Mine is lovely but you feel it would be easier to get an audience with the Pope. I'd struggle to get the right words out with the Pope too.

 

Carolyn Glad your teeth are better.

 

Trying to be ill in bed and look after grandchildren right now. It involves a lot of bouncing. Illness not bc related, more likely a bug they have picked up from school. However I think my period of grace on hormone treatment may be coming to an end - difficult decisions ahead.

 

Everyone. I hope your new year is as good as you can make it. B xxx

Carolyn52
Member

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Hello ladies
Well wishing you all a happy New year and at midnight I will b doing a silent prayer for all our lovely brave ladies that we lost this year ..hoping that 2017 brings more treatments that can help us through another year ...
So enjoy a glass of vino or ten tonight and in my case ..thank you letrozole for keeping me stable this year .
Carolyn xx🍸🍸🍸🍸
Carolyn52
Member

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Hiya FF
Phew the phone call must have left you feeling in limbo about new areas ..but all you can do is wait and speak to oncologist later in month ..sure these people don't realise what fear factors we go through ....after all these years of living with this ..you must be a master of stress tolerance !!
Anyway ..sending loads of my special hugs xxxxx
Carolyn52
Member

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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
funnyface
Member

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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

Stacey
Member

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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.

 

 

Carolyn52
Member

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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
rosie53
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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
Carolyn52
Member

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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
Carolyn52
Member

Re: Bone mets - please join in

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
Carolyn52
Member

Re: Bone mets - please join in

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.
funnyface
Member

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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

Moijan
Member

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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💚💚💚

Carolyn52
Member

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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
JulieD
Community Champion

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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.

Carolyn52
Member

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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
racer
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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

Carolyn52
Member

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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
BJR324
Member

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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

Stillhere
Member

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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!!

Carolyn52
Member

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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
BJR324
Member

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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

funnyface
Member

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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

JulieD
Community Champion

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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

 

Carolyn52
Member

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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
rosie53
Member

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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
Carolyn52
Member

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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
Carolyn52
Member

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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🎅🎅🎅🎅🎅
Moijan
Member

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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💚💚💚

 

💝🎈

Marirose
Member

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Merry Christmas and a very Happy New Year

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

bonariensis
Member

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Happy Christmas everyoneUntitled-1.jpg

Barton
Member

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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

Mollymop
Member

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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
rosie53
Member

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Merry Christmas everyone from Gran Canaria!
I wish you all a happy healthy New Year.
Hugs Janette xxxx💖🎅
Carolyn52
Member

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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 .
🎅🎅🎅🎅
JulieD
Community Champion

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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

Bandit
Member

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Merry Christmas everyone and Happy 2017. Bandit xx
Babsy
Member

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Happy Christmas everyone!!