Bone mets - please join in

[Law36]

Hi iMac my mum was in very bad pain in her hips pelvis and spine due to mets ... They kept giving her medication that didn't ease and I had to watch her in so much pain and not being able to get around at all ... When the oncologist app came he said he would only offer rads If there was pain !!! I explained how much pain she was in day and night and he eventually said yes .. She had rads to the whole of her pelvis and within 2 weeks was in no pain at all ..... That was 2 years ago and she is driving , walking Ect fantastic with no pain sluggr ache sometimes but no pain like it was she said it was the best decision she made 😉

[belinda]

Pain wears you down so. Don't know if it's helpful but a few years ago, with bone mets, I was needing some heavy duty meds to get me through the day. Morphine, Amitriptylin. Now, at time of writing this I take a couple of paracetamol in the evening only. Not every day. So just wanted to say things can improve, for a while, the usual roller coaster that is living with BC.

[Marie123]

Hi Imac and all those having a difficult time, sending lots of hugs and positive vibes . This illness really stinks , but hopefully tomorrow will be a better day . M xxx

[rosie53]

Aww stay strong Imac.....Sending you a cyber hug (((())))

Hugs Janette xxxxxxx 

[imac55]

Thanks Belinda. These comments go to prove no one persons experience is then same. Been such a hard day. I've been so positive, but hit an all time low. Sore eyes from crying.

[belinda]

When I've had mets pain it's been constant, it can be so confusing though, hormonals can cause joint pain, chemo can cause joint, muscle pain and healing bone mets can themselves be painful. Think an MRI is the route I would choose.

[imac55]

Yes Natalie 1. I read this can happen on net. But worrying her saying that. She's lovely and supportive, but if she said an untruth to make me feel better, I'm very concerned. Added to issues with oncologist. Jeeze. Thanks

[rosie53]

Hi Immac, do you mean pain coming and going?? If so I do, like I said in my earlier post I can go for months with hardly any pain then sometimes I do experience some pain for a week or so but it's not agonising pain just more achey and uncomfortable pain that's controlled by naproxen and paracetamol.

Hope this helps Hugs Janette xxxxxxx 

[imac55]

Nurse mentioned rads today, and suggested ways to manage pain. Thanks for comments. Very useful. Can I ask if anyone has experienced pain from mets coming and going? Nurse said this doesn't happen with mets.

[imac55]

Nurse mentioned rads today, and suggested ways to manage pain

[imac55]

Thanks. My bc nurse suggested a bone scan 1st. I think it's worth asking for an mri instead or as well. Had a pet scan in June, but gp said not always accurate.

[imac55]

Thankyou, I'm happy you mentioned it. Sometimes I get the feeling my team think I'm wishing the worst on myself! Good to here what you use to control pain too thanks.

[Cookie17]

Glad to hear Belinda that the rads helped the pain. I have had to have 3 sessions of radiotherapy for different bone pain due to my metastases of the spine. I hope things stay well for you.

[belinda]

Should add, had some rads, pain gone and has not returned.

[belinda]

Hi Imac, I had a quickly arranged MRI scan a couple of years ago after developing a pain running down my leg from hip. Was up at 4am etc, walking round the house trying to ease pain. CT had showed nothing, MRI showed a tumour was squashing nerves running through hip. Your pain may be BC related and it may not but an MRI would pin point the cause. Best Wishes.

[rosie53]

Imac, i have just read my post back, i wasnt suggesting that the pain in your hip was mets, it could be coming from your pelvis mets?? my dx was March last year and on tamoxifen, denosumab and zoladex
Janette x x

[rosie53]

Hi Immac, sorry to hear you are struggling, i would get back on to the hospital and demand that second opinion asap! You should not have to be struggling with pain. My dx with mets was last March and before that i was being treated for sciatica as had terrible pain in my hip that went down my leg, since my treatment plan though i don't get no where that much pain, some months i can go without hardly an ache and others i do some (which i have now) but i only need to use naproxen and paracetamol.
Hope you get some answers soon.....keep pushing them!!
hugs Janette x x

[imac55]

Morning all. Hoping for some advice on here as I'm really struggling with pain control. I have recently been diagnosed with secondary breast cancer in my lung and pelvis bone. Primary was in 2006. Locum oncologist rather blaze re my diagnosis, and his letter to my GP contained many errors. I have asked for a 2nd opinion, still waiting for that. Told him re general pain which is down to exemestane, he suggested paracetamol. No alternative to exemestane other than chemo, which came as a shock. My main concern now though is that on top of the general aches, and dull pain from tumour site on right, I have developed a searing pain in my left hip. Been to Gp. He did a test for sciatica. It's not that. He was very straight with me, he thought poss mets in that area too. Gave me a drug used for epilepsy to help with nerve pain. And was contacting my oncologist. This was a week ago. Drug didn't work pain gradually worsening and is excruciating at times. Worse when sitting and during night when laying. Last 2 nights have taken strong codeine doses as had some left from my recent biopsy ops, and he had offered these, but they make me feel dopey so refused. Very very worried that it has spread, and strong pain killers not touching it. Should I contact my oncologist direct? Very scared that my future is going to be so debilitating from pain. I had some living to do before I expected the pain to increase. Sorry long post.

[rosie53]

Hi Nicky, thanks for your reply, that's really interesting re: markers I had no idea they could differ depending on the lab they went to, will have to wait and see what my onc says tomorrow.

Hope your enjoying your trip away, have a nice glass of red for me 😉

Hugs Janette xxxxxxx 

[nicky08]

Hi Janette

i don't have TMs done but my understanding is that they will be different if a different laboratory measures them. Sometimes by a considerable amount and by that I mean 100s! I read about it ages ago when someone explained what they were but can't point you in any particular direction for more info.

Sorry I've been absent for so long, what with a house move, still no wifi at home and resorting to using the hotel wifi whilst we are away for a short break in Bordeaux.

Keep well ladies, will catch up soon once I'm back in the land of internet access, grrrrrrr.

Nicky x

[rosie53]

Morning ladies, hope you're all keeping well.

Just a quick question about that old chestnut......tumour markers!!! Last month I had them done at Tameside my local hospital and because they take so long to get results from there and I was having more pain than usual my onc said I could go and get them done at the Christie where results come back quicker, which i did the following day. Anyway the Christie result come back at 114 and this was a drop from the 150 so happy days. I have just spoken to my bcn regarding my next bone scan and out of curiosity I asked her what the results of my markers were that were done at Tameside and they were 165!!! How can they be 114 one day and 165 the next????? Has anyone experienced this?? My onc doesn't work Mondays but my bcn is emailing her today to see where we go from here. I prob wouldn't be so mithered about it but I am getting a lot more pain in my hip and spine and for the last 4/5 days have felt really sick and very tired. Oh I hate this blasted disease and the uncertainty it brings!!

Hugs Janette xxxxxxx 

[hopefulholly]

Hi Julie and Stresshead, thank you so much for taking the time to read and respond to my post, I really do appreciate it. Just a quick update. My oncologist team are taking it seriously, I could tell that they were concerned about the symptoms and the delay of 4 years between mammograms. They have acted quickly and arranged for me to have a CT scan of my head tomorrow, hoping to get the results in time to meet with my onc on Wednesday - at least I don't have too long to wait. I did start my radiotherapy as planned on Tuesday.

Although I'm a worrier, I'm usually a positive person but I'm finding it increasingly difficult and feel more nervous over this development than my initial bc diagnosis. On the outside I'm carrying on as normal but my insides are doing somersaults. I've not told my sons, not even mentioned Paget's as they are likely to Google that and find links to bone cancer and I don't want them upset until I know the outcome. 

I'll let you know the outcome. Wishing you well and thank you again, it really does make a difference to know that you guys know how it feels to be in this position xx

[Glo]

I finished 12 treatments of weekly taxol about 5 weeks ago. I did the cold cap so haven't lost my hair although it has thinned more since treatment finished than during it! My bloods stayed good all the way thru treatment, not affected at all! I did have a good response. What I have found is that I can't believe how long it's taking to get my energy back, still shattered!
Good luck Glo xx

[belinda]

Hi, I was the same, it took a couple more further treatments for me to lose my hair so I'm sure it will happen soon. Ditto the bloods and I needed a transfusion. Hope it works well on your skin mets, take care. X

[stresshead]

Hi all and welcome to the 'newbies' sorry yo've had to join us. This forum is the best palce to come on 'dark days'..everyone knows exactly how you feel and will spport you through youur rants raves cries and screams as well as offering brilliant advice.

Was wondering if anyone can help...i have posted on the 'taxol' thread but wondered if any of you have had weekly taxol in the past and can remember when your hair fell out, I was told this was a harsh chemo which wold affect my bloods badly and i would lose my hair. I have had  1 cycle (3 treatments) and so far my bloods have been fine and i still have all my hair. Beginning to think now that if my good cells are intact then its not tkilling the bad ones. This is my third chemo for skin mets and nothing is working. I'm very scared..even my onc seems to have written me off. Any advice wold be greatflly appreciated. Hope yon are al;l as well as can be expected. xx

[Emerald1959]

Hi Kezza

I am quite new myself diagnosed in August with bone and possible liver mets following finding a lump in July so rapid progression for me

Dack days are the norm so do not beat yourselve up about having them try to live for the good days

Is the wheel chair a permanant thing for you? or are you hoping to get rid of it when fracture heals?

This is a very supportive board with plenty of good advise form those ladies that have been dealing with this crap for years

Take care

Huggs a plenty

[rosie53]

Hi Kezza, sorry you have had to join us and i echo what Belinda has said, be kind to yourself and know met ladies are always here to lean on. The uncertainty of the disease is one of the worst parts isn't it. I have my down days but for the most time I chose to box my fears and worry and put it to the back of my head and "try" to live a normal as possible.

Hugs Janette xxxxxxx 

[belinda]

Hi kezza, sorry you have to join us. I think we must all get dark days, I certainly do and I've been living with mets for a long time. Be kind to yourself, go with the flow, it's so hard to live with the uncertainty. I was diagnosed after my hip fractured and was able to have the hip replaced. Is this an option for you? Take care.

[kezzatherebel]

Hi everyone... I am new to the site. Have mets, tumour in my liver, one on my hip and one in my spine. had lumpectomy and lymph node removal in January. currently 2 thirds through chemo, which is shrinking the tumours 🙂 the tumour on my hip caused a fracture, so now I have to use a wheelchair.. to say cancer has changed my life is an understatement.. However, I try to stay positive, I have a great support network, my son of 23 is a godsend. I take supplements, have registered for clinical trials, and try to draw inspiration from reading survival stories. Feeling very desolate for the past few days, keep crying, which is unlike me. Does everyone else get days like this? how do you cope with the dark days? Any advice will be gratefully received xx

[Helen_12]

Thankyou ladies for the replies ,I think what shook me was that Jackie Collins appeared on loose women 9 days before she died and no one knew she was ill ,and she certainly didn't look that poorly ,that's what I can't get my head around, thanks for listening and will keep reading your posts ,just wish I was able to give more input into thread but afraid I don't have much knowledge to help anyone Sending huge hugs to all ladies here on thread going through our own worries and stresses ,it's lovely to be able to post here and know that you have same understanding .love Helen xx

[Marirose]

Thankyou Belinda

I do hope some of you that are worried about life expectancy will read some of the stories they are really inspirational and may give you a positive outlook.

Stresshead I am so sorry you are feeling the way you do as you know I've been in the dark tunnel with skin mets and rash all mine seem to be ulcerating now I have to wait 9 more days to find out what the next step is going to be. I wish I could be there with you to wrap my arms around you but I will send Cyber hugs

All the best to everyone xxx

[Red]

Hi Stresshead. I had my primary in 2005 and had FEC chemo and radiotherapy + 1 yr of herceptin. In 2008 I glad recurrence in neck node treated with Taxotere, radiotherapy and am now on ongoing herceptin. I now have a mets in my acromion, which is part of the scapula. Vinorelbine 1st dose wasn't too bad but day 8 dose knocked me for 6 although not as bad as the Tax or FEC. My onc called it chemo light. I just hope it works. Hope this helps. Red x

[stresshead]

Hi Hopefullyholly...i cant really offer much advice or answer any of your questions but just nted you to know we are all here for you. Please keep us up to date with any decsions that are made. Try and stay strong....easier said than done i know. x

Helen etc..its so lovely to know thaqt i'm not alone in worrying about my own mortality, which is especially hard when someone 'in the limelight' dies. I do try to take encouragement from the stories of people living for years but the uncertainty is awful, as is the strain of putting on a brave face for everyone else. I very often wish i could just crawl away but then  think about my daughter and know i have to keep fighting. So so har though and i wouldnt be able to do it without this form...thank you all.xx

[stresshead]

Hi Red, can you help me? I have been having treatments for skin mets and everyone is filing quickly. I am literally going through the list throwing every name I cn at my onc. When I mentioned vinorelbine he said it would be no use as it is a very mild weak chemo. Can you tell me what mets you have and any other treatments you've had before that one. From what you say it doesn't sound that mild to me!! If any one else has any info please post. MAny thanks.

[stresshead]

Thanks Chocolates for the 'hugs'..really needed them. Hope you are doing ok. x

[belinda]

Hi Marirose, glad you found the links useful. 

There are two online booklets, this is the newer one, 

https://www.bcna.org.au/sites/default/files/hh_messageofhope.pdf

and here's the older one, 

https://www.bcna.org.au/sites/default/files/messages_advanced_cancer_0.pdf

[Marirose]

Hi all haven't posted on this site for a while.

Hello to all Newbies sorry you have had to join us but you will find this thread very informative and many Ladies who have had simular experience's as yourselves and living many years one is Belinda who posted on Inspiring Secondary Stories page 3 wish I knew how to copy and paste the web site she used. Belinda if you are reading this I found the stories of long livers in Australia and it was very encouraging. Julie and Janette also give good advice.

Being positive and being strong keeps us all going but hiccups do come along A good place to go to is the Cyber Cafe where it is cancer free and you can be as stupied as you like. xxx

t

[Red]

Hi Emerald 1959.  I've had bone scans and I was allowed to leave the dept after injection but had to avoid close contact with children and pregnant women. Red

[Emerald1959]

Morning All

Mmm I have have to admit I was shocked at Jackie Collins death has made it seem real if that makes sense? I was only diagnosed middle of last month so still trying to get my head round things trying to remain positive but admitting to occasional slips and feeling of doom! Have a friend coming for lunch today he is an ex pyche nurse and is going to teach me some mindful exersises

Of to have my first bone scan tomorrow does any one one know if they let you out of the dept after you have had the injection? or do you have to sit there till they do the scan 2 hours later?

Good thoughts to all

Cathy

[rosie53]

Morning ladies,

Helen, I totally get what you say and you are not being selfish, I'm sure all us met ladies (and people living with other cancer's) all feel the same at some points I certainly do and when you hear news about someone passing it always brings those scary cancer gremlins to the surface, I was devastated when I read about Rio Ferdinand ' wife dying earlier this year I just could not shake it off!!

Like most I keep a "happy brave face" on things for the most time and try to keep my fears locked away in a little box in the back of my head 😓 it's my way of not letting the bugger beat me!!!

Red, thanks for the website you mentioned I'm going to have a look at that.

Hugs Janette xxxxxxx 

[JulieD]

Hi hopefulholly,

I am sorry you are having such a worrying time and hope that you can get some answers soon, it's horrible being in limbo and weekends are particularly hard.

In answer to your question about staging and mets, it would seem logical that the higher the stage the more likely to get mets but the reality is not necessarily the case. Cancer is an unpredictable disease and even women with grade 1 cannot be guaranteed a life cure, so I don't think you can read too much into staging and future prognosis.

The decision about radiotherapy to your breast will need to be made by your team but it won't necessarally need to be put off whilst you are being 'investigated' I think it will depend on what they think will be the most important....

Sorry I've not been much help but I wanted you to know your post had been seen and your situation recognised. I really hope things  move quickly and you get answers soon and know what options about treatment are available. Please let us know how you get on when you can. Good luck

[Red]

Hi Helen. Yes I was shocked to hear about Jackie Collins and it does make anyone in our situation panic. I have found some comfort from Metastatic Breast Cancer Network website as there is a section there about people who have lived and are continuing to live with mets for over 10 years and one lady is still living 17 years after diagnosis. I too try to pretend everything is normal to protect my children because I don't want them to have to live with my worries and why should they. What annoys me is all the cancer adverts on tv when I'm in the middle of watching a lovely programme with my children. I can't get away from it!! Red x

[Helen_12]

Hi ladies ,again I'm sorry but don't post very often,I do keep up by reading the posts and sad that tree are so many new ladies having s rough time!.So sad that Jackie Collins has passed away and when I read that she had had stage 4 for 6 years Aprox just get so anxious ! I've had sec bone cancer for 3 years 5 years since primary and panic about own mortality which I know sounds really selfish ,for which I am sorry! I am lucky as don't have too much pain at present and pretty much get on with normal day to day living ,!with young family I just pretend that all is ok ,but certain times like this I just feel like I'm in panic mode and get so scared that I feel like I'm going to explode.As you brave ladies know we get so used to putting on a front ,does anyone else feel like this ? sorry to just pop up and moan but it's s lonely old place this cancer and I this is such a relief to come here and let it out
Thanks Helen 12

[hopefulholly]

I hope you don't mind me coming in to your thread. I haven't been diagnosed with bone mets but I have concerns about skull mets. My story in brief: diagnosed with stage 2 slow growing invasive ductal cancer in April; had WLE with clear margins but spread to 1 lymph node and 2 illegible nodes, extracapsular spread and focal vascular spread;  had all lymph nodes removed followed by 3 FEC but 3 T cancelled due to complications (blood clot caused by picc, infection and kidneys struggling). Due to start radiotherapy on Tuesday.

Routine appt with GP on Fri and I mentioned changes to the shape of my skull - the bone in the front of my head, from the hairline is raised and painful (like the clingons in Star Trek!), my skull is also raised on the left side.  Because I noticed this about a year ago before my BC diagnosis my GP said it's 'unlikely' to be skull mets and could be a condition called Paget's Disease which is a thickening of bones. She sent me for an xray to check for Paget's and 'exclude' skull mets but the radiographer refused to xray and said I will need a scan to check for / rule out either or both.

I know it seems odd that I didn't get this checked out before but tbh, it seemed a bit silly to talk about my skull changing shape, then I had family bereavement then the B.C. diagnosis so my focus was on that. 

I'm worried because a) the mammogram that detected my BC was a year late (that's another long story),  b) I've looked up Paget's Disease and skull mets and the symptoms for both are very similar, as is the treatment, bisphosphonates? and 3), if it is skull mets, should the radiotherapy on my breast be postponed until I know for sure?

I was unable to get hold of my oncologist or BCN on Friday so have spent the weekend getting increasingly worried. I am trying to be positive and keep an open mind until I have the scan but I think it's too much of a coincidence to have a primary cancer and a condition that mimics skull mets.

If it is skull mets, the cancer had already spread before my BC was diagnosed but then there was a 4 year gap between my 1st and 2nd mammogram. Does the staging of BC determine the chances of it metastising? Mine was Stage 2.

I'm sorry for such a long post with so many questions. I just wanted to make sure I explained my situation as fully as I could and could do with talking to others who have experienced waiting for results for mets.

Wishing you all the very best and thank you for reading xx

[edwina64]

Hi everyone hope you are all doing ok. Lovely weather at the moment ,went to the beach today as it is near where I live bit tiring though walking back up the cliff! I am on my third week of cape so no tablets still wondering how long for side effects to kick in feel a bit tired but still suffering from my tooth extraction so could be that. I expect the se to get worse but woild be great if they stayed the same ...and it worked! Watched andy murray play tennis for the davies cup and didn't think about cancer for a few hours result!

havexa good week everyone xxx

[Red]

Hi All. Yes it has been a bit quiet on here lately. I've been feeling a bit rough since day 8 of Vinorelbine but am now looking forward to my week off and some kind of normality. So glad you had a lovely time in Cyprus Janette. Red x

[rosie53]

Morning ladies.

Hope everyone is doing okay, sorry I'm one of the guilty ones who have been absent for a few weeks, just got back from Cyprus, had a wonderful time the weather, people and hotel were all amazing.....Already looking at prices for next year!!! 😉

Hi to all the newbies, you are all in good hands on here, everyone is so kind, caring and knowledgeable on living with this horrible disease. 

Off to get all that holiday washing done now!!

Take care hugs Janette xxxx 

[JulieD]

Marie,

Well done! It is hard to see complaints through , so stressful but so worth it when it has an impact. I'm pleased you got an apology it's the least they could do. It's really good that you've made a difference and the new procedures should now prevent others having to go through the same.

Now give yourself time to relax in the knowledge you have made a difference.

Chocs you are right, it is quiet here, hopefully people are busy doing nice things. Take care and lots of love to all my lovely friends here xx

[Chocolates]

Marie, I'm so pleased. This is so important and like you say, no one else going to your hospital should have to suffer the same as you did. I'd like to think they've given you some financial assistance as well but I'm sure that's just going too far.

Hope you manage a decent weekend.  Seems very quiet on here at the moment.

huge hugs everyone

hxx

[Marie123]

Good evening lovely ladies,

Welcome to newbies and hello to old friends. Just a little update . To those who may remember my disastrous start to all this , I have had an answer to my formal complaint. A full and complete apology from all those concerned, Also and this is the important part, new proceedures are now in place. This is what I wanted an apology and hopefully the new ladies having to face this at my hospital will have a better start. I know it is very difficult for all of us, but if we can improve sevices, raise money and help each other we are really giving cancer  the bully what it truly deserves..

Take care everyone and to all rugby widows good luck for the next six weeks.

Love Marie xxx