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Bone mets - please join in

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Re: Bone mets - please join in

Hi there, I’ve just been reading through old posts & see you were/are on Eribulin. How’s it going? 

shirley x

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Re: Bone mets - please join in

Hey guys how are you in this horrible weather today? At least we are not tempted to go out:) Due to the current Covid 19 situation I decided to stop my chemo of Docetaxolafter the 6th cycle so I am on nothing at the moment util they decide what pills to give me. While I was on chemo I only lost part of my hair on the top of my head and around the ears thanks to the scalp cooling. I had my last cycle on 6.03 and now is 28.04 my hairs is still falling when I am combing it. When is it going to stop????

 

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Re: Bone mets - please join in

Just dropping in to say Hi. Been ages since I was on the forum sorry - just not enough time, I have been busy with work and fun stuff, even with the lockdown! 

 

I was dx with secondaries March last year, was on Abembaciclib, letrozole and denosumab. Excellent response - complete remission after 6 months.  6 months later and I have recurrence in my pectoral muscle (I had a lump there last year - that was how they picked it up in my annual check-up). All three spots in my bones still looking good. Changed treatment yesterday to Fulvestrant but staying on the abemaciclib.

 

Trying not to feel to negative but its hard when you thought things were going well. I even started to dream I might make retirement one day. Now it is back to fretting about whether this treatment will even work. I know my NEAD status was always fragile and temporary, but this really brought it home.

 

And I can't even go visit my family or anything with this virus going on 😞

 

oh well I know I am still doing well all things considered there are a lot of people who have things much worse than me. Thinking of you all today.

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Re: Bone mets - please join in

Hi.  Just wondering if you had low back pain before they found the Mets?  

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Re: Bine mets please join in....

Hi mo

have seen your PM I’ll now get on and read it!

Nicky xx

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to nicky08........

Just throwing out a message to ask how you are, if you drop by here. I don’t come to the threads much any more. Won’t say why here. I suppose I should try sending you a PM and may try later. I’ve got out of the BCC habit! But I might give that a go this evening. We all have plenty of time on our hands now, so no excuses! But hoping you are ok. I’m still here!

 

mo.      xxxx

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Re: Bone mets - please join in

Hello ladies , Yorkie1 - just reading your post - have you had tests to rule out other Metabolic bone disorders like hypophophatasia if your Consultant is confused by your results and lack of symptoms  ? I don't want to give you false hope but sometimes it can be quite complex to ascertain that mets are what is being observed  on scans may be worth asking - it's a simple blood test (ALP ) to rule it out .

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Re: Bone mets - please join in

Hi Lollypop

I had a single met at L2 which caused a fracture so had to have surgery to pin it and shore up my spine.    I am ER PR plus HER2 minus.  I then had stereotactic radiotherapy to my spine (three sessions) and since October have been on Abemaciclib, Fulvestrant and Denosunab.  Recovery from surgery has been the toughest part and after an initial hiccup on Ribociclib which made me sick a lot I was switched to Abemaciclib.  The only problems I have with the meds is diarrhoea and upset stomachs and I have to be careful what I eat but apart from that I am fine.  My recent scans were stable.  It is surprising how quickly you get used to it all and can carry on more or less as normal.  Initially there were loads of hospital appointments which was really exhausting but now I only go once a month.  I struggled a lot at first and I used to sit on the sofa and cry a lot but gradually I started to feel better.  Good luck with your treatment plan xx

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BiRe: Bone mets - please join in

To yorkie, hi I am at the worst bit this week , worried losing my mind basically. See oncologist  Friday . Have a,lesion on pelvis I previously had secondary bc with lung mets all shrunk now and scan results excellent. Reading about your experience and others does take the edge off. How do we stop this terrible worrying , but deep down we must be much stronger than we think. Wishing you well , I am hopeless at doing posts on here so what I write is often incoherent.

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Re: Bone mets - please join in

Thanks to everyone for their replies and support. I find this forum a huge comfort.

 

I go to the hospital on Thursday ( all being well) to discuss my treatment plan. My Oncologist admitted he was a little confused as my bloods are all normal, tumour markers included and I have no symptoms whatsoever despite the extensive mets and significant bone damage. 

 

In terms of my appt on Thursday, are there some specific questions I should be asking? I'm ER/PR positive but HER negative. My primary was removed by single mastectomy in Feb. 

 

Thanks as always for your advice xx

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Re: Bone mets - please join in

Hi Yorkie1

 

I’ve also been told that I have “extensive but moderate” bone mets (whatever that means) which were only diagnosed 5 weeks ago.

 

Like you I was very very scared to start with but I’ve now begun treatment and have got my head around this “new” me. I can now talk about it without bursting into tears and I am able to laugh and feel happy. I figure it might not be the life I would have chosen but it’s the only one I’ve got. I have also found this forum to be a massive support - if only to realise you’re not alone.

 

I hope you can start treatment soon.

 

Daffodil 🌼 xxx

 

 

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Re: Bone mets - please join in

Sorry to.hear about your pain..I kept going back.to.the gp ..the pain was similar to bad arthritis in my case. So gp arranged the scan which is.where they saw the lesion.. Keep going to.gp...

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Re: Bone mets - please join in

Hi Biker

I had breast cancer and a mastectomy of my right breast last year. It was HR poss 8/8. No apparent spread to lymph nodes, so no chemo etc.

I've had a really sore aching right leg for a few months, I mentioned it my consultant and he said he thought it was mechanical rather mets but if it persisted he'd send me for a bone scan.

I've since had a mamoplasty on my left breast last week and due to see consultant again next week.

I still have the pain, my leg feels weak and it's bad when I'm in bed at night as well, so not just when I put weight on it.

I know it might be hard to describe, but can you tell me what your leg pain was like and how you managed to get scanned?

Thanks

Helen 😍

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Re: Bone mets - please join in

Thank you, all the best for your upcoming treatment. 

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Re: Bone mets - please join in

Oh biker I’m so sorry, although if they think your heart is suffering then it was for the best. I had a dodgy ecg last week it was 456 which is only 6 over but it’s still worried me. I’m nearly at the end of my first cycle of treatment so I will have my 7 day break soon. There will be treatment options for you so please don’t think there won’t be xx

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Re: Bone mets - please join in

I originally had breast cancer her pos 3 with lung mets , to cut short I was on kadcyla and was working very well, unfortunately it affected my heart function so they stopped treatment . This was away back in August but scans always came back with no more growth. Had an aching leg the  had a scan the they discovered the lesion. I keep saying was,that because I have been off treatment. A nightmare just trying to process all this. Thank you for listening feeling so out on a limb. 

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Re: Bone mets - please join in

Hi biker, 

sorry to hear about your diagnoses it totally sucks, I’m only about 6 weeks post diagnoses and feeling pretty crap most days but the girls on here will keep you going and are all so supportive and have positive stories. What’s your diagnosis? Sending you a big hug xx

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Re: Bone mets - please join in

Just found out I have a lesion on my pelvis so to read some positivity helps regarding treatments. See oncologist this Friday so hope to feel better to hear there will treatments available. Totally lost the plot thinking the worst.

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Re: Bone mets - please join in

hi catokitty, 

 

do mind me asking your diagnoses and treatment plan? I was only diagnosed with spine mets about 6 weeks ago and I’m still struggling xx

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Re: Bone mets - please join in

Hi Yorkie 1 I am sorry about your bad news but please remember there are lots of treatments for bone mets which can keep us going for a good number of years.  It is a horrible shock but hang in there and we are here for you 

Jane xx

 

 

 

 

 

 

 

 

 

 

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Re: Bone mets - please join in

Hi yorkie1, 

im so sorry about your diagnoses it’s allot to get your head around. I’m still not dealing with it well either, I’ve been told it does get easier with time and I’m hoping this is true. What is your treatment plan? Sending you a huge hug xx

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Re: Bone mets - please join in

Hi all,

 

Just had the results of my PET scan and its shown extensive mets throughout my skeleton. 

 

Feeling so scared

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Re: Bone mets - please join in

Oohh that is a lot of jabs in one day lollipop!! I’m off for the dreaded zoladex shortly!

were you advised to have a pneumonia jab? 
J xx

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Re: Bone mets - please join in

Hi Jennie60, 

I had my fluvestrant jabs yesterday and also my zoladex and an pneumonia jab!! Feeling pretty crappy today so it’s a sofa day for me. I think that’s to much in one day but hay ho. Hope your jabs go well xx

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Re: Bone mets - please join in

Thank you for your reply. I feel much better today. What a roller coaster it all is. I'm desperate to stay well. My daughter is expecting her second baby in September and for me my girls and grandaughter are my world. My husband has always said he knows he comes last 😂. Hopefully the bone pain is the Meds.  Off for my fulvestant jabs in a bit. At least when that hurts we know why. Lots of love jennie xx

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Re: Bone mets - please join in

I’ve also had back pain on Ribocliclib so I do think it’s normal xx

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Re: Bone mets - please join in

Hi Jennie, I’ve just finished my first cycle of Ribociclib, my mets are in hips, ribs and spine and recent progression to liver hence the reason for these new meds.

I haven’t had bone pain for a good while now but this week I have had lower back pain which mainly only comes through the night for some reason?? It does say on the side effects of Fulvestrant and Ribociclib bone pain so I’m thinking (hoping) it is down to the meds so I’m not particularly stressed about it but I will mention it next week when I see onc for next cycle.

Also she told me that the guide lines for Ribociclib are, ECG and bloods done fortnightly every 2 weeks for the first 6 weeks then bloods monthly and no need for ECG. My bloods 2 weeks ago were low but not too low that I had to stop but but a few weeks before that they were and had to have a week break, ECGs have been fine though,

hugs J xx

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Re: Bone mets - please join in

Hi lollipop. I haven't had Ecgs for ages. I just have my bloods checked and thankfully up to now all good. Hope the onchologist sorts it out and you can continue with meds. I'm happy with the meds and just want to know that they are working. It's a worry that I'm having this discomfort at the min though. Lots of love xx

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Re: Bone mets - please join in

Hi Pawsome

Started second cycle on monday.  Do you not get hair on brush and thin hairs falling on wash hair days?  I find i do

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Re: Bone mets - please join in

Thanks Jennie

My pain is on my left side which is the opposite side to my pleural effusion. I’m guessing that the rib or surrounding tissue must be inflamed which is why the steroids eased the pain (although what do I know?).

 

Hope your next scan allays some of your fears xxx

 

xxx

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Re: Bone mets - please join in

Hi jennie60,

 

i saw on your last post that your also on ribociclib and fluvestrant jabs, I started my treatment nearly 2 weeks ago and had an initial ecg which was fine. I had another yesterday and it was 458, the nurse said they like it to be 450 or under so I’m borderline! She’s sent it off along with my bloods for the oncologist to look at to see if he thinks the ecg is ok and also my bloods. Have you had an ecg that’s slightly off? It’s really panicked me as I’m only new on these drugs xx

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Re: Bone mets - please join in

Hi yes I've been feeling some discomfort in my right ribs. Not pain exactly. My mets are liver and lung too with a hot spot in my lower spine. I'm on ribiciclib and fulvestant plus bone strengtheners each month. The discomfort comes and goes. I sleep well but knowing it's neareally my liver is a worry. I had a bone scan in November and a ct in January. My next scan is at the end of the month. Hope you feel better soon. I hate this disease xx

 

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Re: Bone mets - please join in

Hi Everyone

 

I’m after a bit of advice please.

 

I was diagnosed with mets in my bones, liver and lungs at the beginning of February. The reason I initially went to the GP was due to a pain in the lower left ribs (on the opposite side to the original diagnosis in 2010) and breathlessness.

 

The breathlessness was the result of a pleural effusion which has since been drained and seems to be ok but the rib pain is still present.

 

I started treatment 2 weeks ago (Docetaxel, Herceptin and Perjeta) and as soon as I started the steroids the rib pain got much better, however over the last 3 days it has been getting steadily worse again.

 

Has anyone else experienced this and if so did treatment ease the pain at all in the long term? The Oncologist has suggested they might give me bone strengthers as well but I don’t know if this will also ease the pain.

Best Wishes xxx

 

 

 

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Re: Bone mets - please join in

Hi yorkie1, 

sorry you’ve had a bad day I have lots of those to  unfortunately. Do you have good friends and family around you to help? I’ve had a rubbish day with one thing or another and I’m feeling very fed up. Let’s hope tomorrow is better for both of us. Massive hug xxx

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Re: Bone mets - please join in

I completely understand how you feel.

 

I'm 32 and a single mum of one. I've had an up and down day today. Feeling ok and then a few tears which isn't like me. I'm normally not a crier at all! 

 

Tomorrow will be better x

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Re: Bone mets - please join in

I had no symptoms at all and I still don’t now, they are fairly small lesions, it was picked up by chance on my first ct scan i had after I got my breast cancer diagnoses but they couldn’t confirm it as it was so small. I had 4 rounds of ec chemo and then had a scan and unfortunately the chemo highlighted the bone mets 😢 and more have shown up. It’s a rubbish hand we’ve been dealt. I’m only 35 with 2 boys of 10 and 14, I’m also a single parent xx

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Re: Bone mets - please join in

Lollypop84

 

That's good to know about ER+ thanks! Also great that you haven't had any side effects, really positive. Did you have lots of back pain before your diagnosis? 

 

I should find out next Thursday the 19th hopefully. X

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Re: Bone mets - please join in

Yorkie1

same as me but I’m grade 2..lots of treatment options for er+ ☺️ I’m on a combination of things I just hope they are working!! I’ve had zero side effects so far which is good, I know what you mean about bad news as I’ve had the same as you. Every appointment I’ve had I’ve been told bad news I just shut down and go into a daze if I’m honest, then come home and cry. When will you find out your treatment plan? Xx

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Re: Bone mets - please join in

Hi Lollypop84

 

Thanks for your reply and hug 🙂 

 

My cancer is breast cancer grade 3 ER positive but HER negative from what I can remember. Most of my appts have been a blur as I've recieved bad news at every one. 

 

There's lots of positive stories on here so I'm trying to focus on what treatment they can give and moving forward. I think speaking to people who are going through the same thing/feelings/emotions is really important. 

 

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Re: Bone mets - please join in

Hi yorkie1, 

 

firstly I’m sorry about your diagnoses and I can totally relate to how you feel, I am now 5 weeks on from secondary diagnoses and still struggling allot. I also have spine mets in a few places. What type of cancer do you have? I have been taken off chemo and put on hormone suppressant tablets and injections as my cancer feeds off oestrogen so the treatment I’m on halts that and the hope is to contain it. Sending you a big hug i feel you’re pain I really do xx

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Re: Bone mets - please join in

Hi all,

 

I've been reading through these forums for a couple of weeks now, working out when I'd be brave enough to post. Turns out, today is the day!

 

I was diagnosed with primary BC grade 3 in January and following an abdo/chest CT scan, it has shown that it has spread to most of my spine. 

I met my oncologist last week and he requested PET scan, pelvic CT and MRI scan, all which will take place this week before he decides my treatment plan. 

I feel like I'm in a dream most of the time or it's happening to someone else. Can anyone else relate? 

 

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Re: Bone mets - please join in

Today  started my second cycle of Ibrance.  I keep taking Letrozole.  Tumour markers were seen to have gone down last week in clinic.  PET will be performed on 30 April.  Hair issue still concerning me.  I have noticed more hair shedding especially when I wash my hair.  In your reply a few weeks back you mentioned you waited for side effects to come, do you mean by that  that you also did not experience shedding hair/hair loss/thinning?

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Re: Bone mets - please join in

Yep I’m with you totally, it’s so hard not to panic, I get aches all over and instantly fear the worst. Please let me know how you get on I will be thinking of you xx

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Re: Bone mets - please join in

Hi 

Thank you for your reply. 

Diagnosed 2016, had lumpectomy, chemo and rads. Currently on letrozole and zoladex.

Impossible not to assume the worst! And the more I think about it, it becomes more sore!

Having gone through bc before, I know this is the hardest part.... Tests and waiting. Just really struggling atm😢

Hugs xx

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Re: Bone mets - please join in

Hi sue, 

i don’t have rib mets but I have spine. We all think the worst i do that all the time as my journey so far has never gone my way..I have been told bone is best as it can be well controlled for a long time I hope! Try not to panic until you know for sure although I know that’s impossible, when was your original diagnoses? Sending you a big hug xxx

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Re: Bone mets - please join in

Hi Ladies

I hope you don't mind me popping in....

I've been having rib pain, so oncologist requested bone scan. This showed up as a hot spot. At the moment, they don't know what it is, so I'm also having a ct scan and bloods taken. Obviously I'm panicking, and assuming the worst. I was wondering if anyone has Mets in their ribs ?

Hugs xx

 

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Re: Bone mets - please join in

Nicky08, I'm so sorry, I've been meaning to reply to you since I got the diagnosis from my scans and to thank you again for your support. My CT scan was clear and my bone scan shows a small spot to my sternum from my lymph node-"a nibble" my onc said. Unfortunately this can't be operated on, so I'm no longer having a mastectomy as originally planned (not for the foreseeable future anyway) and I will be starting IV chemo, probably next week, although this is palliative chemo, rather than a cure. Received the onc's letter today and it is referred to on my letter as a loco-regional recurrance. My onc is hoping I can have a new chemo that has only just been approved, Atezolizumab and Nab Pacilitaxel if my tumour is PD-L1, although my onc said i've only got about a 40% chance of my tumour being this. If not, I will be having Carboplatin, but I don't know how many cycles, perhaps it depends on how I respond to it. 

I hope you are keeping well and side effects from your treatment are manageable and not causing you any problems  x

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Re: Bone mets - please join in


@Pawsome wrote:

Hi, I remember the same thing after starting palbociclib. I kept waiting for the side effects to start after hearing they could be quite bad. Tbh mine never did. I’ve had a few days where I’ve felt bad due to headache/nausea at the start of each cycle but things have settled down now I’m on cycle 4. My team said the goal was to make me feel like I’m not actually on treatment and they have lots of ladies on their books who feel like that. I originally thought they must be talking nonsense but actually after a few months and things settling down they were right. Most days I don’t feel like I’m on treatment and I’m able to have moments in the day now where I don’t think about the cancer. My hospital have around 20 ladies on palbociclib and they’re all dealt with by the same person so they’ve got quite a bit of knowledge about the drug and side effects - more so than my BCN - so I speak to them if I have any problems. But as it’s new to the NHS they are constantly learning about how it affects different people. I’ve got lung mets and bone mets (spine, rib, sternum and pelvis).  I’ve also spoken to lots of ladies on this combo and whilst it doesn’t suit everyone a lot of ladies are doing very well on it xx


Thanks so much for replying.  I have just taken 125 Ibrance (day 5) and still waiting for side effects just as you say. I am a bit obsessed with my hair though, and, even counting how many hairs I lose when I comb in the morning and at night and taking note of it.  I used cold cap 4.5 years ago during chemo and retained as much as 50 - 60 % of hair,  worked hard on it and would not like to lose my thick hair now.  The hair issue I sent just an addition to the anxiety of having been diagnosed with secondary bc. 

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Re: Bone mets - please join in

Hi, I remember the same thing after starting palbociclib. I kept waiting for the side effects to start after hearing they could be quite bad. Tbh mine never did. I’ve had a few days where I’ve felt bad due to headache/nausea at the start of each cycle but things have settled down now I’m on cycle 4. My team said the goal was to make me feel like I’m not actually on treatment and they have lots of ladies on their books who feel like that. I originally thought they must be talking nonsense but actually after a few months and things settling down they were right. Most days I don’t feel like I’m on treatment and I’m able to have moments in the day now where I don’t think about the cancer. My hospital have around 20 ladies on palbociclib and they’re all dealt with by the same person so they’ve got quite a bit of knowledge about the drug and side effects - more so than my BCN - so I speak to them if I have any problems. But as it’s new to the NHS they are constantly learning about how it affects different people. I’ve got lung mets and bone mets (spine, rib, sternum and pelvis).  I’ve also spoken to lots of ladies on this combo and whilst it doesn’t suit everyone a lot of ladies are doing very well on it xx

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Re: Bone mets - please join in


@Pawsome wrote:

Hi 4748- I’m on the same treatment as you and currently on my fourth cycle. My first scan shows the treatment is working and most of my mets have shrunk by 50% after being on treatment for just under three months. I also wanted to respond to your concerns about your hair thinning concerns - I know this is listed as a side effect and some ladies do experience this - but my hair hasn’t thinned at all. I have really thick hair and my hairdresser hasn’t noticed any difference in its thickness at all. The only think I have noticed is that is is growing a lot more slowly but that just means fewer hairdresser appointments. So it might be worth waiting and seeing what happens with your hair before getting it cut unless you wanted a change in hairstyle anyway? I’ve not done anything special with mine - still using exactly the same shampoo and conditioner and also blow drying and styling it everyday the same way I did before starting treatment xx


Many thanks for your reply.  I have a solitary bc mets in my T-9 (praying there will me no more since last scan and starting treatment 4 days ago with Ibrance and 11 day shift with Letrozole).  I was very close to spinal cord compression and had emergency x10 sessions of radiotherapy early Jan 20.  I am hoping to get SBRT in May but first need pet/ct done in May to review whether treatment is working.  The last few days I have picked up a little emotionally but still finding the diagnosis very hard.  Feels like a death sentence and now, as if this is not enough add on top of it the ‘hair issue’ as side effect.  I have very good hair too.  Had it cut yesterday shoulder and really missing my long hair but obsessed with checking hair loss.

I have tried looking online how soon after taking Ibrance one should expect to experience side effects such as vomiting, not feeling well, hair loss etc but cannot find anything online.  I asked one of the breast care nurses but there does not seem to be much knowledge on the drug - she actually thought it would be straight away - not sure about that.