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Bone mets - please join in

Anne30
Member

Re: Bone mets - please join in

Thank you for replying. It’s easy to feel overwhelmed. Such a help to hear from people who understand
Carolyn52
Member

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
Anne30
Member

Re: Bone mets - please join in

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
Anne30
Member

Re: Bone mets - please join in

Thank you. I am seeing the oncologist on
Monday. Then I start chemo
Anne30
Member

Re: Bone mets - please join in

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
Pippin
Member

Re: Bone mets - please join in

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

rosie53
Member

Re: Bone mets - please join in

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
Carolyn52
Member

Re: Bone mets - please join in

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
Carolyn52
Member

Re: Bone mets - please join in

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
Anne30
Member

Re: Bone mets - please join in

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
LYNDYLOO
Member

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

Carolyn52
Member

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
☺☺☺
funnyface
Community Champion

Re: Bone mets - please join in

Go Linda and Nicky! Love hearing those amazing numbers! 

 

Easter Bunny sprinkled snow on us on his way out! 

Carolyn52
Member

Re: Bone mets - please join in

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🐰
rosie53
Member

Re: Bone mets - please join in

Congrats Linda
J xx
bonariensis
Member

Re: Bone mets - please join in

Well done Nicky and Linda, you both give us hope, encouragement and inspiration.

Bon xx

LYNDYLOO
Member

Re: Bone mets - please join in

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

rosie53
Member

Re: Bone mets - please join in

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
bonariensis
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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🐰🐰🐰🐰
nicky08
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

 

rosie53
Member

Re: Bone mets - please join in

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
Carolyn52
Member

Re: Bone mets - please join in

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 .

🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰🐰
tatyana
Member

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...!
rosie53
Member

Re: Bone mets - please join in

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
Hayeswen
Member

Re: Bone mets - please join in

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 😄
funnyface
Community Champion

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
redridinghood
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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🍫🍫🍫
Phoebe4
Member

Re: Bone mets - please join in

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
Bousy
Member

Re: Bone mets - please join in

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

Phoebe4
Member

Re: Bone mets - please join in

Thanks Tatyana xx
Phoebe4
Member

Re: Bone mets - please join in

Great thanks Bon
Happy Easter to you xx
Phoebe4
Member

Re: Bone mets - please join in

Thanks Linda

Long may you continue with the cape!

Hugs x

bonariensis
Member

Re: Bone mets - please join in

Renee!

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

 

Bon x

bonariensis
Member

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

LYNDYLOO
Member

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

tatyana
Member

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!🐰🐰
Phoebe4
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

Hiya Renee

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

Xxx
funnyface
Community Champion

Re: Bone mets - please join in

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

jazmia
Member

Re: Bone mets - please join in

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

thinking of you all

Love R enee

silverlining
Member

Re: Bone mets - please join in

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

 

love,

silver...xxxWoman HappyWoman Happy

funnyface
Community Champion

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
ramade
Member

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

ramade
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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☺☺
LYNDYLOO
Member

Re: Bone mets - please join in

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