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Bone mets - please join in

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Re: Bone mets - please join in

Hi FF

So sorry to hear that your results were not good - it's not easy to make decisions about your treatment but I think option E sounds right. I have had exemestane but not everolimus so can't give an opinion on it sorry.

I would definitely book a holiday for your anniversary! 35 years is worth celebrating. Where might you go?

You take care & am sending ((((((cyber))))))) hugs across the pond to you.

Helen x

 

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FF, really sorry to hear your current treatment has failed, I think you have gone for the best option though. Your onc sounds like he has really taken the time out with you to explore all options which is great for you. It's really cruel isn't it that not only do you have the worry of failing treatments but also the financial side of it all to consider too!
Hugs Janette xxxxx
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Hello FF
So so sorry to hear ibrance has let you down after a good spell on it.
The e and e combo you are starting on is not widely offered here in the UK ..I think evorimus was recently taken off the option list due to the high cost to nhs.
You must enjoy your anniversary ..it's a long road trip but a very special one.
It sounds like your oncologist spent a long time with you and at least there is options for different treatment.
Hugs xxxx
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Dear FF I am on the E combo for the last four months. I feel much better and pains in my bones have almost disappeared. Side effects are not that serious. But the cost is high . For me Leterosoble failed after one year.. enjoy your anniversary just worry free. Love and Best wishes
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 Lyndyloo, Thanks for responding. Loving the 3 years. I'm not sure this is going to work out financially. With Medicae here in the states it will cost me $5000+ for the first cycle. Then I would be in what they catastropic and would have to pay $1100 a cycle. Evermolinus is $14,000+ for 28 pills! Crazy!

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 Lyndyloo, Thanks for responding. Loving the 3 years. I'm not sure this is going to work out financially. With Medica�e here in the states it will cost me $5000+ for the first cycle. Then I would be in what they catastropic and would have to pay $1100 a cycle. Evermolinus is $14,000+ for 28 pills! Crazy!

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Dear FF I'm really sorry to hear your news. Yes it's important that you are free to celebrate your anniversary, to go away and live and celebrate the moment and then to make the decision. It seems strange that, with all the medical technology now available, it's still difficult to find out what's happening in your lungs. 
Big hugs across the pond B xx

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Evening funnyface I am on the E/E combo. I have been on it just over 3 years. I have found it Ok. Fortunately I have not suffered with any major side effects. I am on 5 mg Everolimus.. Feel free to ask any questions.
Hope that helps Linda

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Everyone talks about palbociclib visiting a fortune. Ha, ha, ha signifies(Veroninue) is  a lot more. $14,0000/ month!

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Moijan, I'm so tired of my kindle changing my words. It's a flapper not clapper. Yes, I do believe that ballcock is the official name.

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FF i think you are referring to the 'ballcock' toilet clapper sounds nicer tho!

 

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FF sorry to hear your news...what a bggr! Sounds as if you have made sensible choice, taking into account your commitments and recent events. 

 

You deserve some worry free time.

 

let us know how your results goxx

Moijanxx

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Okay, Well I should have been worried bc results weren't good. This will be a little long. In Oct I had a new nodule in left lung. It has remained stable since then. In January second nodule appeared and a cloudy area. It was decided to wait til now to see. This time both of the previous noduless remained stable and the cloudy area, but a  3rd one appeared in top of left lung. The others are in the bottom. It is pretty much decided that ibrance (palbociclib)/ letrozole has failed.  

 

These are my choices:

 

A. Stay on the current combo for another 3 months and scan again and see. They can't be positive the nodules are cancer.

 

B. Have a pet scan to see if nodules light up and go from there with either chemo, hormonals or cyber knife.  I really don't want a pet scan at the moment! My 35th anniversary is May 1st and I want to go away for a few days. I don't want it to light up other things for more trouble. I want to go away in peace and deal with this when I get back. I spent my 30th in the hospital bc of complications from radiation. I'm celebrating this one. Also from what I understand, I'm on what they call Medicare here and it only pays for two in your life time.

 

C. Have it biopsied. Then same choices as in "B". Great risk of lung collapsing. Not willing to do this.

 

D. To have cyber knife we need to know if they are cancerous, unless the Dr that does this just agreed they are cancer.

 

E. Finish my next dose of my medicine. Come back after the off week and see what my counts are and then start a new treatment. She doesn't want to put me on chemo yet. She wants to try exemestane (aromasin)/ everolimus (afinitor) combo. 

 

I have decided on "E". I will do one more round of my current combo, which will make me due in her office May 8th. One week after my anniversary. We will check my counts.If my white counts and platelets are OK, I will begin the new combo. Then we will do a CT in 3 months. If the new combo works we will continue. If the nodules grow or more appear we will do a Pet scan and cyber knife then. We also just might see what the cyber  knife Dr says.

 

So ladies who is on this combo? FF

 

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Carolyn, First things first! The toilet flapper is the piece inside that lets the water in the tank and stops it when full. Ours was not dealing properly and the water would leak out of the tank some and t h enough would automatically fill the tank without flushing. I would be in the bathroom and it would do this and I'd jump. It made feel like there was a ghost in the house. FF

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FF. .fingers toes and roller blind crossed for good scan results today .
Love Lindt choc too ..especially the reindeer at Xmas and bunnies at Easter ..yum .
Please put me out my misery ..what is a toilet flapper ? Do I need to get hubby to fix one ? Ha ha ..roller blind is up but he can't get the pullies to work ...so can only use bathroom when its light or fumble around in dark .poor neighbours might get a eyeful ..not a pretty site !!
Xxx
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Maldives, Sounds like you are getting the work up. Fingers and toes are crossed for you! I would cross my eyes too, but my face might freeze like that! Tuesday is a reasonable amount of time to wait, even though I know we all want those results on the spot!

 

Srilata, I also love Lindt chocolate. If they aren't in your stores they are on Amazon UK, I looked. 

 

Janette, My oh my, quite a visual! You have set our imagindtions on over drive! Ha, ha ha!!

 

 PMOL, There isn't many brands of chocolate I don't like! I do particularly like milk chocolate the best, and like anything filled with, carmele, mint, or coconut.

 

Carolyn, I think I heard your hubby, or maybe that was coming from  my bathroom!! Hubby is hanging a mirror and fixing the toilet flapper.

 

Hugs ladies, Headed out the door for scan results! FF

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Hello everyone
Maldives I hope your scan results show the cape is kicking the butt of the little blighters and then the side effects won't seem so bad if its working !!
Hubby is fixing a roller blind in bathroom so excuse all the swearing u might be hearing from here in Devon ! Don't think its going to plan by the sounds I hear !! Bless.
Oh Sun is out now ..better load up washing machine again !!
Xxxx
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Hershey or cadburys I love both. Recently my sister-in-law presented me a large packet of Hershey . my son ate all . But Cadburys brings back the good old days when my uncle used to visit us always with a packet of cadburys.all the best for the results☺ Carolyn , matriarch is a powerful lady looking after the tribe.
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Hi everyone. I hope you are all ok at the moment. I've had a rough week but it's probably because I over did it the last couple of weeks. Had my MIR for my liver on Monday CT scan tomorrow. Results Tuesday. This last round of cape is taking it's toll. Be glad when I finish on Friday. Well fingers crossed for all you girls awaiting results. Spring is in the air we want good news. Xxxx
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Hi girls -

Funnyface my daughter LOVES Hersheys chocolate! Well, to be truthful she LOVES all chocolate!!! Anyway good luck with the results tomorrow 🤗

 

Carolyn, think matriarch is a good title to have 😉 Good luck with your results too...

 

not sure when i've got mine yet so I'll let you know... probably will be all over the shop with emotions...

 

hope everyone is feeling ok and a bit strong. Xxxx ❤️❤️❤️

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I have to admit to not looking very hard at Jamal the first time and assuming he was a lamb, it being spring and all that but then i looked again and decided it wasn't qiute right.for a lamb.

B xx

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Sounds like something from a low budget porn film in your house then Jeanette !!
Have fun ..no wander you have been too busy to post lately here ...ha ha.
Carolyn 🐰🐰
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Hahaha your right there Carolyn.....love em! Bite the top off get all the creme out first (with tongue) whoops sounds rather naughty that 😀 then eat the chocolate egg!!!...bliss
Janette xxx
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Oh FF
How could u not like a Cadburys creme egg ..we Brits used to love them ..I was able to eat three in one sitting but gone off them now !
If Jeanette is reading this ...she will be drooling as she is the queen of creme eggs now !!
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The only thing I've ever had from Cadbury's was a bite of one of those Easter Eggs with the yolk! Disgusting! The rest went on the trash. FF

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Hahaha, Carolyn I also looked up the definition too! I class you as the head of "our tribe" hope you take it as a compliment! 😆😆
Hugs Janette xx
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Hello Barton
Just looked up the definition of matriarch :
A old lady who is head of a family or tribe !!
Not sure about that now especially from someone that can't tell a baby lamb from a donkey !! But will accept it as the only other achievement I got was a brownie badge when I was 7 for jumping in the deep end of a pool holding my nose !! And for wearing bright lime crocs a few years ago !! Ha ha.

Anyway ladies ..hope everyone is tickity boo today and coping with everything life chucks at us !!
Xxxx
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Good Lord - sorry, I really should read all the posts before replying! Carolyn has already mentioned Cadburys, and your CT results are due tomorrow, ff. Good luck.

 

Hugs. Barton.x

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Hello ff, you aren't the only one stressing over chocolate being made in another country now! It wasn't so long ago that an American company bought out Cadburys, promising that they would keep the manufacturing in Cadbury in Birmingham (UK!), and then promptly broke their promise and moved everything to the US! To say we are miffed is a bit of an understatement! Not only that, they have started changing the recipes, and it's now nowhere near as nice! And reducing sizes! So we know how you feel.

 

Sorry about totally off topic post! Good luck with your CT results. Do you know when you are getting them?

 

Carolyn - how do you feel about being a matriarch? (Smiley Very Happy). Good luck for your CT results, Carolyn - I know you still have a couple of weeks before your results.

 

Hugs to all. Barton.x

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Hiya FF
All the best for your scan results tomorrow ..u r so calm ...
No I don't think I have tried Hershey choc but yum sounds lovely ....
Personally I have never forgiven my beloved Cadburys chocolate for selling to the US ...they have changed the ingredients and its just not the same !! Not sure what brand name they use in the us.
I remember as a little girl going to Cadburys factory and being given lots of samples and I can still taste those little chocs ..wrapped up in purple foil !! So magical !!
Cyber hands across the pond for your scan results .....
Xxxx
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Thanks ladies! I got up this morning and started to stress a little. Then I reminded myself of my own message I sent and how sensible it was!! I got myself right back to calm. I'm off to work in a bit so my mind will be busy. Enjoy the day!! FF

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Carolyn, Wish I could package up some chocolates and wine to help you wait for results! Do you have "Hershey" chocolate products there?  If you do they were made in Hershey, PA. This is about  an hour and 10 min. drive West of me. The town's street lights were shaped like hershey kisses. They have an amusemtnt park there too and c you can take a ride through a stimulated chocolate making program. At the end of the ride they give you a chocolate bar. There is a store to buy their products and souvenirs.  Hershey is still making chocolate in the states, but in 2007 moved a good percent of chocolate manufacturing to Mexico. Milton Hershey the founder is rolling over in his grave. Hershey Bars were advertised with the slogan "America's Dream"! He would not be pleased! FF

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😂😂that really tickled me about Jamal Carolyn!!
Hugs Janette xxx
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Hello Jeanette
Checking in ...still feeling kind of stupid thinking that Jamal was a lamb ..and not a donkey !! Ha ha
Yes I do go a little quiet at scan result times ..u know me so well .
Carolyn xxx
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Good luck FF with with CT results.
Shout out to Carolyn, hope your okay, I worry when our matriarch isn't posting much????? I know it's "sqweeky bump time for you as you have your CT results looming, they will absolutely fine I'm sure lovely!
Hugs janette xxx
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Funnyface  Hope your results are good on Thursday. Lots of hugs while you wait.

B xx

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Funny face Your CT result I am sure will be fine.Best wishes.it is good that you are not worrying and feeling OK.
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CT accomplished. Results Thursday, but I'm not stressing this time. I know they are watching an area and going to decide if palbociclib is failing, but I'm not worrying bc I feel OK. I kind of decided even if it has failed it can't be too bad bc I don't feel any different. We shall see! FF

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Srilata, Its good that you spoke to your doctor. I'm sorry your taste is messed up, but at least nothing sinister is causing it!! FF

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Thanks . it feels good to be sharing with you. My doctor said the loss of taste is because of the medicines.
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Im confused .com ...as I'm a townie through and through ..I thought Jamal was a lamb but looking again ..it's a baby donkey then ?
Glad u got rid of old sofa ...moijan ...I'm really into clearing out ..just dumped some old bobbly jumpers and leggings ..and some old boots !!
Not showing off but my house is like a flower shop today ..got five vases full but hubby will be moaning about the lilies as they make him sneeze !!
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Natalie,  that sounds very exciting....the delivery man! How long has that been going on? 

I occasionally ( rarely) get flowers, but then, I havent got a tame delvery man, eitherxx

 

ive decided, what I really need is a baby donkey! Could keep the grass short and manure the flowers etc.

 

am hiding from oh just now.....as I decided, time to dump an old sofa at the dump , but would you believe the fuss and all the 'but we wont get it out of the door' ' the dump shuts at four oclock' 'im not leaving it outside overnight' you never heard such a fuss and faff, really.......

 

  The sofa made it down the stairs, out of the door and to the dump by four! But only because I kept telling him to shut up and stop stressing! So now I feel as if ive had an overdose of oh!

 

Mx

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Hello srilata, welcome, but sorry you have had to join us. We're a friendly lot though, and will help in any way we can. I'm afraid I can't help with the loss of taste and appetite - sorry. Someone who has good advice should be along shortly, though.

 

Hugs. Barton.x

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Hello PMOL, I hope your back is OK after your injection, and no spasms (they are awful, aren't they?).

 

Lovely to hear from you, Corey - and he is just lovely! I don't know how you cope, living on a farm. Not my cup of tea, I'm afraid (too much like hard work for me!).

 

Hugs. Barton.x

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Hello Pippin, sorry to hear about your hip pain! I hope the beer helped!

 

Waving back, ff!

 

Sorry Carolyn, I thought you said your scan was in April - or is that your Onc appointment for the results? Oops! Glad it went so smoothly - they usually are quite efficient in that department, aren't they?

 

Hope everyone else is getting the sun like we are - it's absolutely gorgeous in Devon today (and yesterday, in fact). I hope your snow has finally gone, ff.

 

Yes, Carolyn, looking forward to coffee and cheese scone tomorrow! I wouldn't miss that for the world.

 

Hugs to all. Barton.x

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Srilata, Welcome! Taste is effected by many  different treatments. I do think most people get a metallic taste. I haven't heard many people complain of no taste. Are you losing weight because your not eating as we because of no taste? I don't know of any tricks to help the no taste. If this is the reason f r weight loss you are just probably have to eat regardless of taste. If you don't know why you are losing you definitely need to speak to your oncologist.

 

 

Corey, Jamal is adorable. He is sure to lift your spirit. Best medicine! Is he a miniature donkey?

 

Happy to sed more activity on here!  Happy Mothers Day all. Hope the chocolates and flowers are rolling in. Our Mothers day isn't celebrated until May. May 14th this year. Our Fathers Day are both June 18th. Have a great day! FF

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Hello shrilata
Welcome to the forum and we hope you find a lot of kindness and support to help you.
Arnt u lucky ...loosing weight ..the less I eat the fatter I get !!
Seriously ..I do not have any medical advice for you and its important you chat to your oncologist if you are worried about weight loss which you can't explain ....
You might be able to find some old threads about weight loss if you do a search which might help .
Hugs xxxx
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Hi Jeanette
Yes ..no brownie points for being absent but its that time of year to be busy .
I've got house ful so no cleaning for me today ..I'm cooking too ..don't like the commercial mothers day thing eating out either.
I've got loads of stuff ..chocs flowers and even from granchildren so being spoilt .
So happy mother's day to everyone ...
That cute photo of Jamal has certainly activated this thread !!
Xxx
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Morning ladies, sorry I'm also guilty for being absent for a few days. Busy doing up the bedrooms now our daughter has flown the nest!
How beautiful is this weather, it's been like a summers day here 🌞🌝I have yet another wash load on as I post!
Aww loving Jamal he's gorgeous!
Happy Mother's day all hope you all have a lovely day! I've just received some flowers from the delivery man, got son and daughter here for dinner today (think I got that wrong some how! ) hahaha, they did offer to take me out but I don't enjoy going out on mother's day it's like a production factory and rushed, I'd rather just relax at home with my babies!
Hugs Janette xxx
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Hi 

 

Jamal is so cute .My love to him.

 

 

I am new to this group.

 

Had bone met from primary invasive ductal cancer diagnosed in 2014. I am on hormone therapy and zoledronic acid  for 9 months. I have a loss of appetite and no taste, Is this normal side effect ? Can anything improve this becuse I am loosing weight.  

 

srilata03