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Bone mets - please join in

Alexde
Member

Re: Bone mets - please join in

Hi everyone, A word on stats, it is better to be anecdotally alive than statistically dead. We only become a statistic when we die!! On this thread we are all very much alive. I have had bone mets for nearly 10 years now. I had a bit of progression last year and had to have rads and meds were changed. I am now well again, tumour markers are the lowest they have been for about five years. I have just moved into a wreck if a house which we are renovating so spend most days covered in dust from mortar, plaster and bricks and sometimes soot. Here’s hoping everyone has an enjoyable weekend😃
tatyana
Member

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Mets is short for metastases, which is when the cancer spreads to somewhere other than its original place.
SarahLousie105
Member

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It is when the tumor spreads from the breast to the bones. People can get mets in all different parts of the body, ie lungs, liver, skin. Hope this helps you

Sandi54
Member

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Can anyone tell me what bone Mets are please ?
Kate21
Member

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That’s more or less what I heard, plus that she’d had, or was having, treatment in Germany. I find her posts on this thread so interesting, especially her early ones...Thank you

Carolyn52
Member

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Finty opened this thread on 2010 ( 8 years ago) and she moved to the US website "inspire " ..she was quite active there for a while. One of the other members was trying to contact her but said her profile was now inactive. ..
That's about all I know but I have only been here since October 2015 myself.
Kate21
Member

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Does anyone keep in touch with Finty? I did hear she was having treatment in Germany and had posted on an American site. Thanks

Kate21
Member

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Dear Silver and Tatiana,

 

You’re both too kind, I’d say more stubborn, and not liking being told what to do! 

 

Love to you both, Kate x

silverlining
Member

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dear Kate,

 

What an inspiring attitude.....xx

tatyana
Member

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Kate, I love your attitude! "2-3 years! Huh! I'm not having that-- I'll show you!" Go girl!
Kate21
Member

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Love the hey ho! Agree stats are just stats, no more, and frankly the majority can be made to say whatever you care to twist them to say! When I started on Letrozole I remember my Oncologist saying she was very hopeful it would work for me, I asked for how long, her reply was, could be more or less but usually around 2-3 years on average. That statistic made me want to beat that time frame and gave me something to aim for, so very much a positive for me. Kxx

silverlining
Member

Re: Bone mets - please join in

Hi tatyana,

 

What an encouraging quote & you did made me giggle about one's changing attitudes to statistics...so very true xx he, he, he.....

 

tatyana
Member

Re: Bone mets - please join in

Hey ho Silver! I can't see what's wrong with posting anything you want! This thread is for people who already have a secondary diagnosis, of course stats are only stats, but some people like to have information, and this is a great place to share. I know I've learned a lot which I would never have learned if people felt they couldn't post anything gloomy!!
It's a different matter with other areas of the forum where people are still coming to terms with a primary diagnosis, I try to make sure anything I post there is reasonably optimistic!
But there's some amazing optimistic stuff here too. As for the stats: with my first ever diagnosis I was quoted 70%. I thought that sounded good. Many years later, I think 20% sounds good. It all depends where you are coming from!
Anne30
Member

Re: Bone mets - please join in

I certainly don’t think anyone should be told off for mentioning stats. I looked at them a lot when I was first diagnosed. I’m not sure it did me much good but people should do what suits them. However, I would say that for me the best thing has been to listen to what my oncologist says about me. We’re all different. If a patient wants to know what the future may hold the oncologist will have the best idea. Mine says she doesn’t know! Best wishes to all x
Kate21
Member

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Obviously within reason but I thought this was a free forum for all? Nobody should be made to feel like they’ve been ‘told off’ because they’ve posted a few stats! Reading them certainly doesn’t trouble me, they are what they are, like them or not and yes, before I’m told, I’m fully aware of their reliability and outside factors involved. There’s a lot posted on here that some of us disagree with, but are tolerant enough to respect others posts, whether we agree and believe in them or not.

feelthefear
Member

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I just want to say, I for one am not worried or upset by stats etc. I’m just not interested in them.
I understand some people are, and that’s their choice.
I’ve never been normal in my life and don’t plan on being normal now, so normal stats would be of no use at all to me. 😀

Tatyana, watching football in the village hall sounds lovely. I’m always a bit envious of those who live in villages where everyone gets together for events and celebrations. 😀
windflower
Member

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Windflower here again,

 

I hope I haven't worried anybody by repeating what the nurse said about length of time people live with secondaries.  I think she shouldn't have said that and in any case, the statistics she was quoting must have been out of date.  People live much longer with secondaries now and I certainly wouldn't ask anyone how long I've got.  We just have to carry on as normal, once the shock has worn off.  

 

I'm not a football fan, but still watched the match and was hoping England would win.  It's a shame they got so near to it.  We've been switching between tennis and football recently and I now know more about the scoring systems they use.  (Have never been able to hit a ball with a raquet(?), myself!)

silverlining
Member

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I'm obviously been told off here so I've removed the stats.

 

I had said that there are those of us who want the stats & those that don't....but I really was most certainly not trying to upset anyone! Far from it......

 

back down my rabbit hole......A big apology to those I've upset.....x

Moijan
Member

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Silver...most of us have learned not to look at stats...how can they possibly help you? They won’t give any reassurance  Posting them will possibly depress other people who would rather not know too.

 

 

bc is not 1 disease, but maybe hundreds. So they can’t compare like with like at all. And we don’t know what they ARE comparing....so they are complete ba*lls, sorry.xx

 

 

Moijan💚

tatyana
Member

Re: Bone mets - please join in

I watched it on the big screen at the village hall, great atmosphere, all the kids in the village were there. There's going to be some bleary eyes at school this morning! Quite glad it didn't go to penalties in the end, none of us could have stood that!

I have never asked my onc for a prediction as to how long I've got, I know they can't really tell at this stage and it's only statistics. My friend who has pancreatic cancer says her statistics are 8% survival, but she says somebody has to be in the 8% so why not her? Love it!

I try to live for today. I don't always succeed, but mostly I just get on with my life!
Love and hugs to everyone. 🌷🌷
MaggieB
Member

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feelthefear
Member

Re: Bone mets - please join in

I’ve had a gin and ginger beer, but it hasn’t given me the courage to watch anymore either Carolyn. 😀

I’ve only had ct scans tatyana. My oncologist says looking at the cts he doesn’t believe there’s cancer anywhere else.
To be honest, I’m still digesting this bad news so don’t think I’d cope every well with anymore at the minute so I’m happy to believe him.
If two years is the usual for mets, I wonder if that means I can cash in my life insurance in 12 months time. 🤔
If I’ve only got 12 months left they pay out early. That could buy me a lot of radical treatments.
Always have to look on the bright side. 😀
silverlining
Member

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I guess there are some of us who want surety and others who'd rather not know

 

For myself, I've decided very much to live each and everyday...for that's the only way I know how to cope.I really do not think about it, most days.....

 

I guess we all have to figure out what is best for us. Its not an easy journey, by a long shot!

 

Big waves to you all, 

silver..xWoman Happy

ann-m
Community Champion

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😬😬😬...come on!!!

I'm on the wine...

Carolyn52
Member

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Come on England ..make us proud and get to the final ..

I can't bear to watch. .so having my sneaky gin and tonic in the garden!

tatyana
Member

Re: Bone mets - please join in

Windflower, what an amazing story! Maybe you've already been living with secondaries for 23 years (and counting!), you just didn't know. Keep it up, it's so encouraging!
It's interesting to hear how different people's experiences are when it comes to scans. I've only had CT scans, never an MRI or a bone scan, so I can't possibly know if I have bone Mets. Some people seem to be given every scan in the book as soon as they are diagnosed, others get the bare minimum. I wonder, is it money, or medical differences of opinion?
windflower
Member

Re: Bone mets - please join in

Hi everybody,

I am a bit puzzled by how long secondaries have been present as they must have been there before they are found.  My primary breast cancer was in 1995 and I had a lumpectomy, "mild" chemotherapy |(including Methotrexate) in tablet form, radiotherapy and then five years of Tamoxifen.  I had a bone scan which was OK.  I didn't have any CT scans - I don't know if they did them then.  Then 15 years after stopping Tamoxifen and being discharged and 20 years after my primary (I don't know what kind of breast cancer it was, I wasn't told, but it must have been hormone related) I was taken ill and it was found that I had secondary breast cancer in my peritoneum and I had to have an ileostomy.  I had FEC chemotherapy and then Anastrozole, which I still take more than three years later.  Whilst having the FEC a scan revealed that I had multiple bony metastasis that had presumably been there for some time, so I was put on Denosumab injections.  So, I don't know how long I've had secondaries.  Obviously the little b's were circulating in my blood stream, but does this count as secondaries?  I have no soft tissue involvement.  I'm not sure if it is still in my peritoneum and it isn't mentioned on scan reports.  Apparently peritoneal mets are quite hard to see on CT scans.  So, it is over 23 years since my initial diagnosis and over 3 years since I found out I have secondaries.  Since then I have been told my disease is "stable", so people can live for a considerable time with secondaries.  When I first found out about my bony metastasis  I mentioned a friend who had lived about two years after secondaries were found and the nurse said, "Oh yes, two to three years is the average time for people with secondaries."  After coming on this forum I realise that I am by no means unusual to be living with cancer, so long after original diagnosis.

Windflower

silverlining
Member

Re: Bone mets - please join in

G'morning & hello to nicky, anne30, f-the-f & tatyana,

 

Thanks most sincerely for sharing your 'Ca stories'. I'm learning such a great deal & I appreciate this. This disease can be very isolating.

 

Your other comments have given me 'hope'...such a vital commodity for us all. The uncertainty is sometimes hard to bear but my primary weapon is humour.....its the only way to keep my emotional head above water.....

 

Thanks for your kindness ....

 

I'm just silver...xxx.....

Anne30
Member

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Just to add a little to the ten year comment - the nurses at the hospital I go to and the MacMillan nurses have told me about many ladies with secondaries who have lived with secondaries for more than ten years and are still well. Obviously that’s not everyone’s story but the nurses don’t make things up. It’s best to be realistic but live in hope (I think!)
tatyana
Member

Re: Bone mets - please join in

Hi Silverlining,
I probably didn't make it very clear, but actually it just isn't very clear!! After my initial lumpectomy, axillary clearance and rads in 2002, I was symptom-free for 15 years, with a total of 10 years hormone treatments as a precaution. During this time I had no scans except for mammograms, which I had no faith in as they never showed my primary tumour even when I told them where it was!
So as far as anyone knew I had no nodes and no secondaries.
When I presented in 2017 with new symptoms in the same breast, the docs couldn't decide whether it was a new primary or a recurrence or a secondary. My original primary was ER+, the new one was triple negative. But apparently it's not unknown for them to change their characteristics. I guess we'll never know; in any case it didn't affect the treatment plan.
So I had fec-t and mastectomy, and it was my first post-surgery scan that revealed secondaries. And here I am!
It just showed how much they still have to learn about this wretched disease!
feelthefear
Member

Re: Bone mets - please join in

That’s interesting Nicky. I’ll certainly be asking my oncologist about ovary ablation.
I think I’m where I am now thanks to tamoxifen not working. My periods didn’t even stop until my 5th chemo and then started back up again a couple of months later. I told my oncologist at the time that this worried me, but he said it didn’t make a difference.

As for the longest anyone living with mets being 10 years, we know that’s not the case. And as others have said, there are so many new treatments now, who knows how long any of us will live. Only time will tell.

For me, I think believing in a positive outcome for myself will add to my good health and see me through even longer.
And there’s a race on to develop even more of these targeted therapies/ immunotherapies, so as far as treatments for secondaries is concerned, I would say that these are exciting times.
nicky08
Community Champion

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Hi, yes I find it very surprising that an oncologist has only heard of one other person living more than 10 years with mets! When I joined the forum, when my mets were diagnosed in 2008, there were quite a few ladies who had lived about 10 or even more years with mets and that was obviously before any of the newer more targeted treatments were available to them! One lady was on Capecitabine for 9 years and I have a friend who lives locally to me who has lived with bone mets for at least 15 years (she’s HER2+). Comments like theirs don’t really instil you with confidence do they? 

As to the post menopausal question I had zoladex and tamoxifen in 2003 after my primary dx and had awful menopausal symptoms but I was 41 so some years away from my natural menopause. When my mets were dx 5 years later (by which time I was still on Tamoxifen but only had zoladex for 2 years) my periods returned. I’m sure this surge in hormones was what brought my mets on sooner than they would have done. I decided to have an ovary ablation as a blood test post chemo showed me to be peri menopausal so I did not want more hormones being produced and didn’t want to have zoladex again. Chemo most often will push you into the menopause but it’s not a definite outcome so it’s best to have a blood test if you’re unsure.

Nicky x

Anne30
Member

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I am surprised to hear an oncologist saying he’s only heard of one person living ten years. My oncologist won’t promise anything but she does stress that each case is different and she treats everyone as an individual. She won’t promise ten years but won’t rule it out. My understanding is that there are a lot of new treatments and we should keep hopeful. However, I’ve only been on this journey for four months so other ladies will know much more. I wonder if anyone else finds the comment surprising? Everyone’s case is different x
silverlining
Member

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Hi tatyana,

 

I'm very sorry to hear of your triple negative diagnosis. Does this mean that you've had secondary cancer since 2002 and that the type of cancer has changed. Sorry...I'm a lil' confused. Are they now treating you with different types of chemo.?

silver...x

tatyana
Member

Re: Bone mets - please join in

I was perimenopausal at the time of my first diagnosis, in 2002. I started with zoladex for two years and tamoxifen for about 5 years, by which time I was post menopause good and proper. So they switched me to letrozole, which is better than tamoxifen if you are post menopause.

My second diagnosis, last year, was triple negative, in which case hormone treatments don't apply and your menopausal status is irrelevant!
silverlining
Member

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I'm amazed to hear that some of our number are at the 10 year mark. My oncologist said in all his years he's only known one patient get to that milestone.

 

Are there any here that are post-menopausal naturally? I believe the treatment is somewhat different.....

 

Wishing u all a good Monday! xx

feelthefear
Member

Re: Bone mets - please join in

Instant menopause sounds fantastic. Whatever the side effects, I’ll handle them. My oestrogen is trying to finish me off, so the quicker it works the better.

Yes, grandchildren and football. I’ll raise a glass to that. 🥂
tatyana
Member

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Angela, I had two years of zoladex back in the day, instant menopause, with all that that entails! But I honestly didn't find it too bad, and the big bonus was no more periods-- mine had also been very heavy, painful, and every three weeks, so I was well pleased to see the end of that!

I do hope you get the biopsy done in time so you're ok for your holiday. Aren't grandchildren the thing to Brighten up your life!

Grandchildren... and England winning at football!!!
feelthefear
Member

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Ahhh tatyana.
I know how you must feel finding your husband in a state. My heart breaks for mine. I know how strong he’s trying to be, but then I find him just staring into space. His dad died when he was 6 with pancreatic cancer so he’s really already had more of his share of this crap.

How rubbish that your nuets have let you down. And yes, hanging around on wards doing nothing just adds to the misery.
We don’t want to spend anymore time in hospitals than we need to.
I had to spend over an hour on the chemo ward yesterday just to have a zoladex injection. It wasn’t the best of days having to go back there so soon anyway. 🙁
I start letrozole in two weeks, then Palbociclib two weeks after that. Along with the monthly zoladex injection. Periods are really heavy so trying to shut my ovaries down.
My oncologist requested my biopsy last Monday and I’ve just had a letter today to say the pre op isn’t even until July 17 with no date for the actual biopsy yet. We’re due to take our grandson away on August 4 so it better be before then. He’s looking forward to it so much and so am I. He’s the tonic I need.

At least this good weather is set to continue so when you do make it to the lakes the sun should be shining for you.
I just got the choice hotels special offers for Keswick through the letterbox this morning.
Very tempting. 🤫
Well, at least we won the football. Miracles do happen. 😀 xxx
Xxx
tatyana
Member

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Angela, so glad that you now have some hope of surgery. What a great thing this website is for spreading the word! Have you got a definite treatment plan yet for the drugs, or are you waiting for any more tests?
I had one of those days yesterday that we all know about. All geared up for day 1 if my second cycle of gemcarbo. Turned up at 9.45 for a 10.00 appointment. Previous day's blood results had gone missing (second time in a row for me, it's because they"rationalised" by merging lab services with another trust). Long wait for a nurse to be free to take a second sample. Then 1 and 3/4 hours for that to come back. It turned up at 2.15. By which time I was pretty tired of hanging around in a hot stuffy ward or taking a long hike down corridors to a hot stuffy cafe. Still, the results are back, three cheers...oh no. My neuts are borderline. They had to call the oncologist. Who said, if it was the day 8 treatment (gemcitabine only) he'd say go ahead, but as it was Day 1 (the works) he had to say no. Go home, come back next week.

I know a lot of my buddies on here know exactly how that feels! What makes it worse is we'd just booked a week in the Lake District for my next "good" week, which won't be my good week after all, so we had to cancel! This morning I found my lovely hubby in tears because he'd been awake half the night desperately trying to think of ways to make life better for me. Bless him!
Grrr. Oh well, England are about to play a big match, so that'll cheer us up... won't it?
feelthefear
Member

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Thanks for the advice everyone. Nicky, it’s so great to hear you were able to be operated on and her2 neg. A top liver surgeon from the Christie’s told me this would be highly unusual. However, I’ve spoken to someone who was recommended by a lady on this site who I went through chemo with and he says it wouldn’t be a problem.
My oncologist says given where my lesions are (7 of them) surgery in the future could be an option. 👍
Most of them are very small, but there is a whopper of 2cm. 😳
It’s crazy that one of yours turned out to be triple neg. what a sneaky little **** this disease is.

Tatyana, I wish neither of us had to be here, but I can’t lie, its good to hear from someone I feel like I’ve been through so much with. Xxx
silverlining
Member

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Hello nicky,

 

Many thx for your in-depth reply. It means a gr8 deal to me. You give really good advice. I'm 3 years in from my secondary diagnosis....& yes,even then, I had absolutely no idea. There is a lovely companionship on this forum. Its ever so warming. You have done amazingly well; being 10 years on this road. I feel less alone when I pop in here. I live on my own & attend most appts. solo. In a way, this does make it harder.

 

Hello rosie53,

 

How lovely to hear from you....

 

Wondering how you are all coping with this incessant heat. I've wilted as I dont much like it over 21C!!! What a grumpy one.....I'm a spring & autumn gal.....

With love & thx to u all,

silver...xx

Carolyn52
Member

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Oh Bon


I remember that cream tea really well ..the cream was still frozen , the scones so hard that any cricket players would have welcomed them instead of a ball and the jam pips ..I was picking out my teeth for days ! But hey hoo it was a nice catch up and we could put the world to rights about our ailments.
Hope fran and I can join you soon again for a better cream tea !
🍰🍦🍧🍨
tatyana
Member

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Nicky and Millie, congrats on your Stable Mabels, that's great news!

Angela, it's horrible, but it's still good that you can be treated with hormone drugs like letrozole, it means there are a lot of options. Hang on in there, I know you're a fighter. Big hugs.xx
bonariensis
Member

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Hi Nicky

I was so pleased to read about your results. What a winding path you have trodden. what a tangled web cancer can be. Hope holiday was good too.

 

I have met Carolyn once or twice but never her accompanying spiders. Carolyn, Fran and I did however once have what must have been the worst cream tea in Devon.

 

Hi Ftf

I'm sorry you are having to join us so soon after primary. Nicky is always full of good advice. The only other thing i would say is don't Google, stick to reliable websites like this one, MacMillan and Cancer Research uk

 

love to all Bon x

nicky08
Community Champion

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Thanks ladies, believe me it was a big relief (slight underestimate!) to get the results and yes, after quite a few years of IV treatment and also oral chemo it’s nice just to deal with the SEs of hormone treatment! Even though it involves a quite painful injection into each buttock every 4 weeks and a very undignified stance. I just have to make sure I have my pretty knickers on instead of the big girl pants 👙

Just to say (to feelthefear) surgery is only done if the lesion/s are in an operable position.  I am HER2- so it didn’t matter what the receptor status is, that is useful to know to tailor the treatments rather than deciding if you can have surgery or not. I was lucky to that extent that the main rogue lesion that I wanted removed was in the right lobe and quite isolated so it could be got to. Also it depends on how many lesions you have, I was also lucky to have one of the UKs leading liver cancer surgeons operating out of my local hospital so I had complete faith in his ability. As it turns out this rogue lesion was a completely different receptor status than my other mets as it was triple negative! It explained a lot when I got the biopsy results s no wonder it used to shrink whilst I was on chemo but then grow when I went onto hormone treatments (whereas everything else remained stable, or shrinking, at all times)

Well done  Millie as well for getting Stable Mabel results, whoop, whoop - enjoy it, it’s a real weight off our shoulder - until the next set of scans and results of course - but they’re a few months away.

Nicky x

rosie53
Member

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Hey Nicky, welcome back to the Stable Mabel club!! fantastic news, I’m so pleased for you, glad you enjoyed your holiday too.
Silverlining, as others have already said, far too long between appts, I’m in the stable Mabel club and on hormone treatment with now vertually no pain but still scanned and seen every 3 months.
Feelthefear, that is not good from your onc, pain is the worst thing, apart from the fact it blo-dy hurts it’s also what it does to you mentally, for the “mind games” are the worst thing!
Oh Carolyn, you and spiders 🕷 haha, I must be the only one who isn’t fazed by them, I’d rather have them than flies I hate those dirty horrible things!!
Hugs Janette xx
Millie18
Member

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I'm also pleased to have the Stable Mabel label after getting good scan results after 3 rounds of palbociclib and letrozole for extensive bone mets. Such a relief. Long may it last.
Sarahlew
Member

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Great news nicky long may stable mable reign!!! Xx
feelthefear
Member

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Thanks for the replies ladies.

Nicky, I’ve been looking through your old posts and they’ve definitely given me hope.
How fantastic that your liver mets are now stable. Long may it continue.
I’ve heard that only her2 positive liver can be treated surgically, so it might sound absolutely ridiculous, but I’m kind of hoping they find it’s changed to that once they do my biopsy.

Angela