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Bone mets - please join in

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Re: Bone mets - please join in

Hiya funny face

Yes I thought it a bit selfish to keep the winds all to our selves in the UK so I thought I would share them with you !!!

I will do my sunshine dance for you tomorrow. ..

Hugs xxx
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Welcome Anne! I have lung mets plus lymph nodes in chest. I've had mets since November of 1995! As of today I'm doing well. (Scan results tomorrow) I live in the USA. I work PT. I pretty much just keep smiling and moving along! 

 

Carolyn did you send those winds across the pond! Sixty mph gusts today! Big tree branch down in front yard. Hoping no trees come down. Still longing for a sunny spring day! 

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Dear Nicky Thank you for your reply. I hope I’m now in the right place. It’s very reassuring that you and others manage to live so positively with bone mets. I am so glad I found this forum. Thank you Anne
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What a lovely thought - all calm here now. Really lovely. I need to get my mind in the same state as your garden!
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Wow. .what a wild and windy night we had ..I had my bedroom window open but the wind blew the curtain over my face ... which woke me up with a scare !!
Hubs had to secure garden furniture and canopy which was in danger of ending up in space !

All calm here now xxxx
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That is good Anne that things are in place, please keep us posted, take care.
Hugs Janette xx
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Thank you for replying. It’s easy to feel overwhelmed. Such a help to hear from people who understand
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Re: Bone mets - please join in

Anne

It looks like your oncologist is on the ball and going in heavy with chemo first ..everyone has a individual treatment plan which suits them ....I'm sure as you are so active and fit ..the chemo will be well tolerated by you ...and give the little blighters a good kicking.

Please keep in touch with us so we can support you ..we don't bite !!

Hugs xxx
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I’m not sure if my reply posted or not! I meet with the oncologist on Monday. Then I start chemo. It’s very hard to take all this in! It’s so helpful to hear from people who’ve been through this
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Thank you. I am seeing the oncologist on
Monday. Then I start chemo
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Thank you for replying. It’s hard not to see it as an immediate death sentence! It’s so helpful to hear from people who have coped and are coping
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Hi Anne

Yes, getting that diagnosis of 2ndry breast ca is devastating, I remember it well, it was Xmas 2016. I had a bit of pain which got a bit worse, had 1 dose radiotherapy and by July 2017 went back to work full time on my feet all day and have continued to work ful ltime. Can't run/won't run most people think I'm old and grumpy. It took me quite a few months to go a day without thinking about the diagnosis but I do now. With bone only disease some folk go on a long time ?18 years. Once I got sorted out in July last year I live pretty much the same as I always have except that most weeks I have a treat or two with the kids. This is actually a life improvement for me.

best wishes

Pippin

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Hi Anne, welcome to the forum but sorry you have had to join us, it’s still very early days for you, have you been given a treatment plan yet? As Carolyn has already said, once you know what treatment you are going to be on we can offer more advice.
I know it’s a very scary time for you and there is a lot to take in, please feel free to to ask away any questions, worries etc.
Hugs Janette x
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Hello Anne

Sorry you have had to join us ..it's a bit of a kick in the teeth when you get the dreaded dx of secondaries.

Obviously you are waiting for details of a treatment plan and until you know what ..we can't really offer much advice. If could be a hormone pill like letrozole or similar and a monthly bone injection called denosumab which is easy peasy to tolerate.
Most of us here are on it and cope well ..
Anyway ..please keep in touch and we are all here to offer a bit of daily banter, advice and support for you ....it all becomes the normal way of life as time goes on.

Hugs xx
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Hiya lyndyloo

Have pm you ..these tablets are a bit of a challenge now on day 5 ..
But I'm going to keep going and see if the side effects ease as time goes on.

Hubs has cabin fever ..dying to get out on his garden too ...sunshine out now here after a damp day.

Xx
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I have just been diagnosed with bone mets in the spine and pelvis and am so scared. I feel so well and have just walked five miles. No pain. Can’t believe I’m so ill. What will my life be like? Any thoughts welcome please x
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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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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
☺☺☺
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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🐰🐰🐰🐰
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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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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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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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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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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