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Bone mets - please join in

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

LYNDYLOO
Member

Re: Bone mets - please join in

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

Stillhere
Member

Re: Bone mets - please join in

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

silverlining
Member

Re: Bone mets - please join in

Hi Ramade,

 

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

 

How much longer do u have? 

 

TGC......

silver...xx

funnyface
Community Champion

Re: Bone mets - please join in

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

bonariensis
Member

Re: Bone mets - please join in

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

Carolyn52
Member

Re: Bone mets - please join in

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
Carolyn52
Member

Re: Bone mets - please join in

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
pussy
Member

Re: Bone mets - please join in

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

ramade
Member

Re: Bone mets - please join in

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

funnyface
Community Champion

Re: Bone mets - please join in

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! 

Moijan
Member

Re: Bone mets - please join in

Hi Lindy, just to mention that my hospital call metastatic cancer ‘chronic cancer’ and I agree, that’s much nicer and actually it IS chronic, just like many other illnesses.

 

and so when travel insurance companies ask if one has ever been informed they are’terminal’ we can all say an emphatic NO.

 

hugs, Moijanx

LYNDYLOO
Member

Re: Bone mets - please join in

Hi silver lining

Sorry I forget you are quite new to the forum. It is Everolimus and exemestane. Took that for 3 years 8 months. Now on capecitabine since October which is a chemo tablet.

If you ever have any questions please feel free.
Linda

silverlining
Member

Re: Bone mets - please join in

Hi lyndy loo, What is EE?.....x
marleypop
Member

Re: Bone mets - please join in

Thank you Carolyn....and thank you Linda for the reassuring words. Just got back...nothing set in place yet as they want to take a biopsy first, which they have arranged for next week. Once done, then they have hit the information required to put a plan in place. The consultant was very reassuring, very confident and very positive.
Like you said Linda, the words chronic illness and live for years these days was said.
Think of that what you will, but did make me feel a bit better x
Hoping to get a good nights sleep tonight now...’Phew’...first step done 👍😁x
LYNDYLOO
Member

Re: Bone mets - please join in

Afternoon marleypop

Welcome to the forum. If have come to the right place for support. I found this forum by chance in 2009 when I was diagnosed with bone mets at same time. After chemo and Rads finished in April 2010 I was put on Letrozole and tablets for bone mets. Stayed on that treatment for 4 years. Then was changed to E/E.

They now class bone mets as a chronic illness. I was told at the time people live for years with this condition.

Linda

LYNDYLOO
Member

Re: Bone mets - please join in

Hi Carolyn

Starting on small sounds a good plan. Maximum dose is 10mg but there is also 5mg and 2mg. Don't know why the hospital I attend seem to start on the high and if you can't tolerate it reduce. Had same when I started higher dose first then reduced.

I am sure on the lower dose you will be fine. I took both tablets after having my evening meal. Never stuck to same time each day.

If you and hubby still go abroad on holiday you will be fine. I did sometimes twice a year.

Good luck.

Linda

redridinghood
Member

Re: Bone mets - please join in

Carolyn.....just noticed that  you are starting e/e on Thursday. I know nothing about it so why am I here? Well, the range of potential ses is always wide and one thing I learnt on my recent travels with docetaxel is to try and be prepared. So ask for anything they can give you for  your se box. II needed loperamide. So glad I had it in my box! But my most useful discovery.........after finishing with docetaxel because of allergic reaction returning....... was for mouth ulcers. They arrived  unexpectedly and lasted for a month. Thought they would last forever! Anyway my magic discovery was Iglu gel. I tried Difflam, given by chemo unit. No good for me. Bonjela no good. Something else from the chemo unit that came in sachets burned my mouth and throat! But........everyone different. It might be worth having a little tube of Iglu, or at least know about it to send out hub. It can be bought anywhere. It makes a gluey cover over each ulcer, relieves pain almost immediately and aids recovery because it stays put. No stinging at all.

 

Just a thought. And perhaps others struggling with mouth ulcers might find it worth a try. I know how individual we all are, but that is why we need to know the full range of possibilities. I would try anything at all at one point!! They eventually disappeared although my mouth is still sensitive, so I avoid crisps etc.

 

Well, I took a long time to say very little! Take care everyone, particularly those new to the thread. I haven't adapted to the new time of day yet..........springing forward on Saturday night!

 

mo              x

Carolyn52
Member

Re: Bone mets - please join in

Hiya silver

No your treatment is the first line regime and letrozole is doing it's magic for you by controlling the pelvic mets so enjoy just popping that little pill every day ..
Just to recap ...I was dx with primary bc 2004 ..did the lumpectomy, chemo and rads with tamoxifen etc.

Went 11 years clear. .well and healthy. .only saw gp twice in that time ( that was mosquito bites!! ) and then started getting hip pain .. ( thought it old age as moved house) doc dx sciatica / arthritis !
Scan showed mets in femur , hip , spine and pelvis Oct 2015 ...had a femur pin to support hip etc and then just letrozole and denosumab to now ..

Letrozole can work for years ..we have ladies here 7/8 years on just this little daily pill ...things have progressed for me but I have had a good long run with minimum problems but I'm 65 and retired so don't have the hassle of working these days ( I retired 3 years ago)
So enjoy life now ....I'm sure your daughters will be there for you if you need them but at the moment probably see you as fit and well so sort of forget things.
Thursday is the new treatment day ...aagh .

Hugs xxx
silverlining
Member

Re: Bone mets - please join in

Hi Carolyn,

 

Wow!!! Bingo!!! You've summed up exactly what its like wrt family & friends. I loathe the....But you look so well. My grown up daughters have switched off the whole shebang & sometimes, I'll not see them for up to 8 weeks. My eX has told them to really 'live' their lives and they are obliging & boyo does it hurt! I've tried everything to alter this state of affairs, but to no avail.My friends say they will regret in time but I don't want that for them, either,

 

3 years ago, stage 4 @ initial Dx...mets in pelvis, but now I'm coasting along on Denosumab injections & daily Letrozole. Is this bit unusual i only see my oncologist once every 6 months for a CT scan chest & abdo.? I actually feel like I've just been doing exactly as I've been told....

 

When do you start your new treatment......sending you ooodles of bravery/whatever u need....

 

silver xxx

Carolyn52
Member

Re: Bone mets - please join in

Hello MArley pop

Welcome to the threads ..wishing you all the best today with treatment plan ...it's a huge kick in the teeth when just as you think you have conquered it all ..it comes back but you will feel better when you know exactly what the regime is going to be.

Whatever it is. ..let's hope it kicks the little blighters .

Hugs xxc
Carolyn52
Member

Re: Bone mets - please join in

Hiya lyndyloo

Not sure of dosage yet but he did say start small and he could always increase it ..aagh.

Carolyn52
Member

Re: Bone mets - please join in

Hello silver lining

Cancer is a lonely journey as family and friends just think it's about taking a few pills / chemo and its gone like the flu !! People don't realise that most of our treatment is ongoing back to back stuff either.
What treatment are you on after 3 years of secondary?
marleypop
Member

Re: Bone mets - please join in

Hello ladies, never thought I’d be here again.. I had TNBC grade 3 in 2013...thought I’d cracked it. Just been told that cancer cells have been found to my chest bone. The nurse told me that this was treatable and I would have to take bone strengthening tablets. Have my appointment today to find out all the details.
I’ve had a read through of the messages, not all mind as there is ‘loads’ but it’s been real helpful as to what to expect and given me ideas as to what I need to ask. Amazing how you can read at 2am onwards. Nerves are definitely getting the better of me x will compare my treatment notes once I know...be grateful for any advice 💕xx
LYNDYLOO
Member

Re: Bone mets - please join in

Evening Carolyn

Do you know what dose of Everolimus you are going to be on? I was started on 10ng but changed 5mg after 3 months.

I was still working 31 hours when I started Everolimus. I had extreme fatigue on 10mg acne spots and itching skin everywhere. Once dose was changed all the side effects disappeared.

I really hope you do well on the treatment.

Linda

silverlining
Member

Re: Bone mets - please join in

Hi Carolyn,

 

Are these 2 'new' drugs to be taken in tablet form?

 

Sending you the very best of luck.....I've found the cancer journey to be very lonely & isolating. However, I now have a Macmillan befriender & it has helped me so very much.

 

What are your plans for over the Easter w/end? Are your new mets. hurting you daily?

 

Take extra special care....

 

silver.......no lining needed...he,he,he....hugggs

Jobey68
Member

Re: Bone mets - please join in

 Carolyn it's never our fault! In a moment of madness post diagnosis hubby said "whatever you want is yours" lord alone knows what he was thinking as he knows only too well I don't forget anything !! he blames the beer but I've held him to it ever since! 😜 And just for the record I have 3 hoovers...  all Dysons though ... only one house so even I can't explain why 😂😜