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Bone mets - please join in

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Re: Bone mets - please join in

Hi Carolyn

Sounds like treatment is going OK apart from trots. It is a bit of a pain having to go to chemo unit more regularly. Everolimus can cause raised sugar levels and high cholesterol so they should check for that. as well. Fortunately it not affect my levels.

As I mentioned before I used to take tablets in the evening whether that makes any difference not sure.

Wish weather would Improve so I can get out for a walk or do abit gardening. Have not cut grass yet this year.

Linda
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Re: Bone mets - please join in

Good morning ladies

Up early today ..new pills gave me the early morning trots so here I am bright and early.( tmi)
The new E and E regime has changed my routine now as every 4 weeks I have to go to the chemo unit to collect them and have the bone juice.
BUT: I get a little mot first ...bloods, pressure, heart temperature and I get weighed ...now this is like Weight watchers / fat club in reverse as if u loose a pound ..nurse says "oh dearie me" and u don't get a sticky gold star but asked if u are eating ok !!

Anyway have a good day might try a bit more zzzzzz
☺☺☺
Community Champion

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Go Linda and Nicky! Love hearing those amazing numbers! 

 

Easter Bunny sprinkled snow on us on his way out! 

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Well done ladies ..an inspiration to us all that live with the fear factor !!
Hot cross bun or easter Egg? Decisions decisions ....maybe both !!

Hugs xxx🐰
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Congrats Linda
J xx
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Well done Nicky and Linda, you both give us hope, encouragement and inspiration.

Bon xx

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Hi again Nicky

Congratulations on 10th anniversary since your mets diagnosis . It will be 9 years on 17 August for me. Breast and bone mets at same time. Can't believe it has been that long.

Linda
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Hi Nicky, lovely to hear from you, and what better news too, 10 year since your dx!!!!! Love when I read posts like this, it gives us all hope and confidence for the future! I’m just over the 4 year mark 🤞🏻🤞🏻 And am so grateful to still be around, go back 4 years and I didn’t think I would see the year out!! My little girl gets married next Oct and cannot wait to see that day.
Well its a totally rubbish day here today lots of wind and rain so a lazy day ahead me thinks!
Hugs Janette xx
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We had an Easter egg hunt yesterday. It's surprising how quickly the slugs get there but the eggs were well wrapped up. My son gave me an egg but I didn't feel like eating it. My son and daughter in law are expecting their first child so we all sat swapping childbirth stories. Nothing too offputting though.

Bon xx

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Hiya nicky

On April 1st 2004 ..I went into hospital for my lumpectomy for primary bc. Family thought it hilarious. .only in my world but I'm still here.

Hope everyone has had a good easter day ...I'm chomping Rennie tablets as made a pig of myself with easter eggs ..got to live up to my reputation.

Hugs xx🐰🐰🐰🐰
Community Champion

Re: Bone mets - please join in

Hi ladies

A Happy Easter from me as well 🐰😊🍫enjoy your chocolates or whatever else you fancy - a guilt free day and ditch any diets. Im not a great chocoholicbut enjoy a few Wispa bits so eldest daughter got me a bag of those and hubby bought me a few small things from Hotel Chocolat which I do like but I had to let him down gently about the Flakes he got me. As we’ve had numerous discussions on here before they are not the same any more, never mind he did his best.

So a special day for me as it is 10 years ago that I was dx with mets and I’m still here which is such a bonus. Lots of ups and downs on the way but still able to get on and live my life pretty much as well as I can. Spent the day with family including our baby grandson which is another bonus.

Welcome to all newbies, a lot of activity on here recently with the return of our very own chocolate lover Carolyn 😊 apologies for not having the time to read over the last few days worth of postings but welcome to all and Hi to all tthe ‘old hands’

Nicky x

 

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Tatiana, Haha yes I am old enough to remember the Malteser ad, and I agree chocolate calories don’t count over easter!!
Carolyn that’s exactly what I did last night, broke up half a shell and “hid” the other half from myself until today......within half an hour first half was eaten and I was into the second shell, to be fair hubby did help me and I haven’t eaten the chocolate bunnies that came with it......until later!!!
J xxx
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Ha ha ..isn't it strange but the minute you smash the actual egg ...the battle is lost ..you can try wrapping up half back in foil for another day but sods law ..you reach for it within an hour and finish it ....then spend the rest of the day sucking Rennie tablets !!
I don't like crisps or sweets either especially those haribos. .ugh .

🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰
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Re: Bone mets - please join in

Happy Easter everyone! Janette, are you old enough to remember the days when they advertised maltesers as the chocolates with the less fattening centre?? So you've nothing to worry about. And anyway, chocolate eaten on Easter Sunday or any time in the following week contains no calories. That's a well known scientific fact and you can't prove me wrong!
But I admit I don't have the appetite for chocs and desserts that I used to have, nor for fry-ups, lots of meat etc. I get cravings for green veg! Strange but true, and boy, does it make it easier to keep the weight off.
So chemo does have some benefits, girls...!
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Happy Easter everyone, I demolished a large Malteser egg last night so have had to dig to the back of my draw for those bigger knickers today!!
Chocolate is my absolute favourite, can take or leave crisps and sweets but chocolate is my downfall.
Hope everyone is keeping well.
Hugs Janette xx
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Happy Easter all and enjoy your chocs. It’s my birthday this week and my husband bought me a massive box of chocs which I keep resisting but have a feeling they will be gone by tomorrow 😄
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Cuddles and kisses yesterday from my granddaughter. Today is my daughter's birthday. First time it has been on Easter. The big footed bunny left some chocolate. I must say that this  1 1/2 years of dieting has changed me. I  bought the chocolates and couldn't wait for today to get them.Well, the day is here and I ate one piece and really looked at the rest of it and don't want any. Yesterday at my daughter's for dinner I had a small piece of ice cream cake. Really didn't want any of the other desserts. Loving this change! It will help me keep it off. Happy Easter all! Enjoy your families! FF

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Red riding hood

You have made a mistake ..I have TWO huge choc eggs on my lap right now !!

Yum ...bigger knickers for me !

Hugs xxx
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Just to say Happy Easter to everyone! Hoping you are all ok today, and enjoying a few choc eggs! I know dear carolyn will have one on her lap for sure!

 

mo               xxxxxxxxxxxxxxxx

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Hello ladies

Well happy easter to you all ..I'm just cuddling the twins. .5 months old now and gorgeous. .too young for eggs this year so bought them a puppet instead ...it's a puppet as Brian connelly used to say!

Well now on my E And E regime ...here's hoping no side effects ...devil pills someone called them.

Happy easter ..forget diet and chomp as much choc as you can ladies xxx🍫🍫🍫
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Hi Liz thanks for that lovely encouraging message which is just what me and my husband needed to hear today! So glad you are doing so well on the eribulin!
Have a very Happy Easter
Phoebe xx
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Hi Phoebe,

Sorry to hear your treatment isn’t working. Cape didn’t work for me at all. After 5 cycles they put me on Eribulin, that was July last year. I’m now on cycle 13. It has started to heal my bones and my liver mets are not reported on scans any more. One of my liver mets was 4 cm!

i have never had sickness, it’s the fatigue that is the worst for me but only on certain days. Just had another scan and it’s still ok. 

I didn’t loose my hair, it just thinned and now with special shampoo I have a full head of hair.

It is a very mild chemo compared to some I’ve had I’m hoping it keeps working.

You will be fine on it.

Take Care,

Liz

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Thanks Tatyana xx
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Great thanks Bon
Happy Easter to you xx
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Thanks Linda

Long may you continue with the cape!

Hugs x

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Renee!

Great to hear from you, have been thinking about you. Hope you get to see your family at Easter.

 

Bon x

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Re: Bone mets - please join in

Hi Phoebe

 

Here is a link to the eribulin thread:

https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Chemo-Buddy-Needed-Anyone-Cur...

 

I haven't been on it myself but there are some encouraging stories to be read there. Sorry cape has stopped working for you.

 

Hope you have a wonderful family celebration.

 

Bon x

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Re: Bone mets - please join in

Hi Phoebe

Sorry to hear cap has stopped working. There is a thread for eribulin under the title of Treatment and medical issues.

I have not been on the treatment you are to be on as I am still on cap at the moment.

Hope you can find that thread as there is loads of people are on it at the moment. Seems like it is a very torable chemo.

Linda
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Re: Bone mets - please join in

Phoebe, so sorry to hear that cape isn't working for you any more. I hope you get on ok with whatever they offer you next. Big hugs.

And Easter love and hugs to everyone. I hope everyone's taste buds are ok and you can enjoy the chocolate!🐰🐰
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Hi everyone

Just adjusting to the news that my liver cancer has grown, so now abandoning capecitibene, after 9 months of a good quality of life. I do have pretty advanced liver mets and things were looking very bleak this time last year. 8 sessions of taxel saved my life and then I have been kept stable on capecitibene.

 

Now they are doing various tests to see if I'm suitable for Eribulin. If so, I will start on 10th April. Managed to get a date after next weekend when we have a big family celebration for my son and husband's birthdays!

I remember seeing some posts from other ladies on eribulin but couldn't find them today.

 

Is anyone else still on this and how are you finding it? 

Thanks ladies

Phoebe xx

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Hiya Renee

Nice to hear from you ..how are you feeling today ? Hope u are well enough to try a few easter eggs !!

Xxx
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Hi Renee! Hang in there! Hope you have some weekend plans with family and friends. Hugs! FF

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Hi to all the lovely ladies on this site ,and a very happy weekendto everyone.

thinking of you all

Love R enee

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A Happy Easter/ long w/end to one and all!

 

love,

silver...xxxWoman HappyWoman Happy

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Lyndyloo, Thanks for the good wishes. No, the cataracts aren't from my treatments. They run in our family. My brothers had them in their 40's. My first cataract was done 7 years ago. This one was to the side of my eye back then and slowly worked its way across.

 

Crossing my fingers the E & E is still working.

 

Happy Easter! FF

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Oh remade. .that's very kind of you to say ...I'm sorry you are having the big guns stuff at the moment. .but hope you are coping ok with it all ...think warmer spring weather will help our bones as all this cold and damp stuff isn't good ..why don't NHS put a couple of months in Spain on our prescription to help us !!

Can't remember if I posted this before but I bought a electric hot water bottle online ( amazon /eBay sell them) best £12.99 I have ever spent ..it takes 10 minutes plugged in to heat up and stays warm for 6 hours ..I love it for my hip pain and even for a headache if I get one etc. ..also if u have hunt the vein and bruising ..it's lovely and soothing ...

Hugs xxxx
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Re: Bone mets - please join in

don't worry Carolyn, 5mg should be very doable,i found i was whereas i couldn't stay on 10mg because of side effects. it seems sensible your hospital have started you on lower dose,

hugs ramade xx

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Don't worry Carolyn, i found the 5mg very doable.

So glad you're back. the bone thread wasn't the same without you.

 

love ramade xx

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Well been hospital early this morning ( shock to the system to be up so early ) got my E and E tablets now to start tomorrow ...it's 5 mgs dose of everolimus ( cant spell it or say it) which I think is the lower dose but still scared of side effects ..but ignore me as a lot of you ladies are on big guns chemo and cope better than me !!

Hugs xx☺☺
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Morning Ramade

I was wondering how you were getting on with your new chemo. Sorry you seem to be having a really bad time of it at the moment . Hopefully once you have a CT scan it is working really well and you don't have to stay on it to long.

Have a good weekend.

Linda
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Morning Funnyface

Good luck with your scan results next week. I had my 3 monthly CT Wednesday. Unfortunately here it can take upto 5 weeks to get results.

Hope EE is still working for you. Was tiur cataract caused by the different treatments you have been on over the years?

Have a good weekend.

Linda
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Hi Carolyn, I just wanted to chip in and wish you luck for tomorrow, I think it's your first E/E? Hope it goes well. Also FF, good luck for your scan and results, you get a speedy service across the pond at least...having a CT scan next week also, I think it will be "goodbye trial" time. Have a very Happy Easter everyone and eat LOADS of chocolate!! xx

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Hi Ramade,

 

Chemo. is undeniably the pits!! Is this your 2nd. time around?

 

How much longer do u have? 

 

TGC......

silver...xx

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Bonariensis, Cataracts run in my family. I had my other eye done 7 hears ago. My brothers had theirs done in their mid forties. I can't wait to get it done. Glares are driving me crazy! Glad yours is working out good already! FF

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Hi Ff

Good luck with your scan and results next week. At least you get the results quite quickly. I had a cataract op yesterday can see much better today with no glasses. Closeup vision not so good though and old glasses don't work for new eye. Thinking of taking that lens out of my glasses. All the stuff we have to take doesn't do our eyes any good.

 

Bon xx

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Kay

How nice to hear from you as you have been very quiet lately ..how are you doing? I think I last read that you were changing to the big guns chemo so hope it's working but also you can still walk and look after your grandchildren.

Hugs xxx
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Remade

Sorry e and e didn't work for you and that u have had to face chemo again but at least it should give the little blighters a good fight. .

Take care xx
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Hi carolyn52
Sorry to hear you have had some progression after a good time on letrozole
At least you have got to try th e e combo I could not try that having had to many other treatments but wish you luck and hope you get some years on this one

Kayxx
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well done for the weightloss ff. also good idea about your bag of useful goodies.

e/e worked for 9 months only for me and i felt massively let down by my body. Now back on chemo and feeling decidedly ropey. i didn't use to swear but chemo can really bring out those 4 letter words i've noticed.

love to all

ramade xx

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LindyLoo, You did great with E &E. I have a scan next Tues. results Thurs. It will be a year in May for E & E. If it fails I know it's back to chemo. Not looking forward to scan results! 

 

Hi Ladies, Before each drug change I always make sure my "Counteracting Bag" is full of supplies. Luckily though we have a 24hr pharmacy about 15 mins down the road. I find water ice a wonderful thing to have on hand too! 

 

Too give you all a laugh. I've worked hard at losing this weight. I keep moving my goal. When I'm finished I will have lost 1/2 of what I started at. I went to the Dr yesterday for a pre- op approval for cataract surgery. The nurse looked at me and said, "You don't have a butt anymore!" Best words ever!