Bone mets - please join in

[mand67]

Thank you Dawn. I think I was probably asking a question that, in retrospect, was not the best 'introductory' post 😊.
I am writing this at 5am as my discomfort has woken me up now the codeine has worn off and I can't get back to sleep. I am not being negative, more realistic I think, in feeling that this isn't right. I have a strong feeling I may be here to stay but hearing that you have been living with Mets for 13 years is so encouraging. I really can't imagine how you dealt with the initial diagnosis - especially knowing they were in your skull! You give such a positive message to those of us possibly beginning our second 'journey'. Thank you for giving me strength to face what I feel is ahead.

[dawnhc]

Hi mand67, I'm sorry you haven't had many replies yet. I think yours is a difficult question to answer as possibly most will not know their ALP results. Probably the first they know is, like you they have pain and their onc investigates with scans etc. I have been looking back at my blood results around the time I was dx with bone mets and my ALP is all over the place. Most of the time it was within normal range despite the fact that the bone mets were so extensive but a couple of blood tests were way over the normal range. I think in the early stages pain comes and goes and is generally worse at night. Mine was sneaky and didn't give me much warning at all pain-wise. The first noticeable symptom was when I got really severe sciatica and it was only after dx and looking back that I recall finding it very difficult at night to get comfortable - my head felt sore and I couldnt lie comfortably on my pillow. I experimented with all sorts of pillows - and that can get expensive!! Later after seeing my bone scan the answer was clear to see - I had a lot of bone mets in my skull! I think most people with bone mets find their first warnings are pain in the spine and hips and we all know lots of  other things can cause those pains. I think anyone with a history of breast cancer needs to have this sort of pain investigated - far too many leave it too late because GPs don't always take this seriously enough in my opinion. Sorry, I need to get off my soap box. Have you got a date yet for your bone scan? If not I would be inclined to chase it up. In the nicest possible way I hope we don't see you posting here regularly 🙂 but do let us know how you get on.

Dawn

xx

edit: forgot to mention in case you do end up staying with us - like some of the others here living with bone mets - we've been doing it for a long time! 🙂 My bone mets were found 13 years ago.

[mand67]

Julie thank you so much for your reply. Being five years stable on your first line of treatment is really positive for me to hear. I think I have actually began to prepare myself for the worst news without realising. It's sort of a defense mechanism I guess. I really didn't want my bloods to come back with raised calcium but they did. Yes I know it could be other things but my back and rib pain is constant and getting worse. As I type this I am so uncomfortable. I see the breast specialist tomorrow as it is the procedure I guess that they need to rule out my non BC breast causing trouble before looking further into my rib/ back pain. I just wish I had been referred for a scan first but I understand there is a format to follow by GPs.
Thank you for making me feel less alone. I have very few ppl to talk to as I am on my own (hubby left me during my chemo 11 yrs ago) and I dont want to worry my children.
I will keep you posted and if I do join the club at least I know I can reach out you all of the wonderful ladies here.
P.s. it wasn't a sob story about my husband! It made me stronger! 😃

[JulieD]

Hi Mand67,

I'm sorry you are having a worrying time and hope that you will get some answers soon.

Although this is the bone thread lot of people drop by it's a knd of general meeting place so don't worry too much about posting in the wrong place. You might like to post elsewhere too to see if you get more response, maybe one of the threds under symptoms?

I don't know the answer to your question though I suspect it may be possible because although blood tests can give you a picture it's combination of tests that give a more acurate results. A bone scan would pick up any hot spots so is a better diagnostic tool.

I know it's hard not to worry but worrying won't alter the outcome so try to stay positive whilst accepting that results might not be as you wish. It's difficult but I try to hope for the best and prepare for the worst!

I hope the bone scan is soon and you will know where you stand. Please let us know how you get on. Also. just to try to take some of the terror away I have been living with bone mets for over 5 years now and my first line of treatment is still keeping me stable. I hope you do not join our club, but if you do please remember that though we can't be cured we can be treated an often for many years. xx

[nicky08]

Hi pleasant1i also changed receptor status to HER 2+ from HER2- and had the same treatment as you are going to have. I've been absent for a while due to no wifi but I'll find the thread about Pertuzamab that you may find helpful.

Goid luck with the treatment and hi to all other mets ladies.

Nicky x

[mand67]

P.s. I really think I'm posting to the wrong thread but can't find one about 'worrying you may have SBC'.

[mand67]

I'm sorry if I'm posting in the wrong place! Just wondering whether it was likely/ possible to have bone Mets with a normal alkaline phosphatase result .I am waiting for a bone scan for spine and rib pain which is getting progressively worse over past month but was just a niggle for the preceding 9 months .Need codeine every night now! Only blood test slightly out of range was serum calcium of 2.64 .Is this a n indication that I am probably worrying about nothing?
My history is IDC 2004 ER+ HER- 4/14 nodes .
Thank you in advance for any advice. I feel so alone worrying

[JulieD]

BLH, so pleased you found the Seond Hope site interesting. As I said it's only just launched so will grow over the coming months/years. Thanks for signing petition too, it's important we try to get our voices heard.

Dull and raining here today after a nice bright weekend. Hope the rain clears later. Good luck to anyone with results, scans appointments etc this week. xx

[BJH]

Thank you Julie for recommending the site secondhope.org.uk.  Well worth a look.  There's also a petition re. a new drug to sign and share (which I've done).

[Glo]

Hi Pleasant1,
Sorry you've had progression, it's a bummer isn't it!! Good that you've had the change of HER2 status identified though as I believe the treatment for that works well! Regarding hair why don't you go for the cold cap? I've recently had 12 sessions of weekly paclitaxol and used the cold cap. I did get a bald patch on top but can hide it, my hair has thinned more since chemo finished 6 weeks ago but I still have plenty, and eyebrows and eyelashes didn't go until about 3 weeks after the end of chemo. They are now growing back slowly and bald patch is starting to fill in! Def recommend cold cap, just looking " normal" makes you feel better!
Good luck with your treatment
Glo xxx

[Pleasant1]

Morning all

Hope you're all somehow managing your secondary world today.

Many apologies for not thanking so many of you for your support at the end of August. natalie1, marirose, Lynnq, edwina64, stresshead – and any others I may have missed. I dipped out for a while as schools went back and life became too hectic. I've finally caught up on reading seven/eight pages between then and now.

Marie123 I totally agree. What can we do about it? Nothing much as we feel very alone and there's not even any secondary groups meeting around here. There are monthly meetings in Bristol but it's such a trek to get to and fitting in with a busy family life and hospital appointments makes it near impossible. Is there anything we could organise ourselves regarding any kind of get together? No doubt we're scattered all over the UK! I'm half-an-hour or so from Bath if anyone wants to PM me.

Regarding my latest **bleep**, my ct showed signs of cancer spread so the last couple of months of treatment with Letrozole and the injections combo is obviously not working. Yet another shock I'd not prepared for as other than my breathlessness I'd imagined it was working. I'm due back at hospital next week to have a chemo planning meeting and a PICC line fitted in preparation for doses on two consecutive days the week after. Bye, bye hair again. It's taken four years for my eyebrows to sprout so I may never get to see them again at this rate. The dread of going through it all again is totally hideous. My nose is even bleeding now and I never get nose bleeds!

Anyway it's changed from ER+HER2- to ER+HER2+ Going on Herceptin (trastuzumab), Pertucumab on day one and Docetaxel (Taxotere) on day two. Got to have six of the latter, not sure how many of the first two. I requested a PICC but perhaps I should have asked for a Portacath? Although that would then take longer as I should request a general to have it fitted by the sounds of it!

So FED UP with it all but must somehow muster my inner forces to get through the coming winter of total discontent. It's truly a worse fear to have to face it all again when you know what you're in for and how badly you do not ever want to go back there. :((((( xxxxx

[Marirose]

Hi I am in agreement with you all there is little publication on SBC/MBC I knew nothing about it until it was thrust upon me. It's about time more information was published about it  and more money is needed for research and drugs with this awful desease xxx 

[Marirose]

Hi I am in agreement with you all there is little publication on SBC/MBC I knew nothing about it until it was thrust upon me. It's about time more information was published about it  and more money is needed for research and drugs. 

[rosie53]

Belinda, Marie and Julie, I agree with everything you have all said. People in the know like to bury their heads in the sand and sweep us mbc/sbc ladies...and men under the carpet and concentrate on primary fluffy pink!!!! It makes me so mad 😠it's because of this that I for one had know idea what mbc was and that there was a good chance that I could go on to develop this horrible disease.

Rant over......hugs Janette xxxx 

[JulieD]

Don't apologize Marie, you are right, it's all pink and fluffy and happy smiles with no realism about the small but significant number who go on to get mets and what that means and what it's like for us.

You might be interested ladies in a new charity which has just been launched and is specifically aimed at SBC. It aims to raise awareness and also raise money for research into SBC/MBC. If you'd like a look you'll find it at  secondhope.org.uk

Hope those who have been and and struggling are feeling a bit better. Hold on to hope lovely ladies xx

[belinda]

Hi Marie and all. Yes I agree, a 1,000 invisible women die each month in the UK. It makes me feel both sad and angry.

X

[Marie123]

Hello friends, I apologise for what I am about to say as I do not want to annoy or upset anyone. But I have read so many bc stories in magazines and newspapers recently  of women successfully beating bc. Of course I am very pleased for these women and I wish them well and free from cancer. BUT why is there NEVER an article about sbc. I feel as if we are a secret that the press doesn't want to acknowedge. Sorry about this I am a bit achy at the moment so maybe that is making me a bit negative.  Best wishes to all M xxx

[imac55]

Thanks Jeanette. Yes doing that now, was doing same as you. Still not enough at times. Went for a walk today without my stick, and meds were nearly due. Big mistake. Hobbled back. That's a lesson learnt

[rosie53]

Hi Imac, hope you have a lovely break at the caravan, glad you have managed to get your appt brought forward.  Remember to take your pain relief at regular intervals, I made the mistake of only taking it when I was struggling, and was told by my bcn you need to take them regularly to keep it at bay.

Hugs Janette xxxxxxx 

[imac55]

Thankyou ladies for your continued support. I have an earlier appointment to see my oncologist next week. In the meantime I'm managing the pain a bit better, but getting breakthrough pain still as paracetamol, ibuprofen and codeine not strong enough. I don't want the heavy opiates, so sooner I get amother scan and further diagnosis of this 2nd hip, the sooner I can have rads. Going away in caravan for a few days as weather been glorious and have a whole week with no appointments planned. Thanks again x

[Janijan]

I have lung liver and bone mets in pelvis around my sacro iliac joint. I started with bone pain in May mainly when weight bearing like walking.  I had radiotherapy on it at the end of June which hasn't helped at all.  I won't take morphine because of the side effects but I now have fentanyl patches, naproxen and paracetamol every day with few side effects meaning I can think clearly and oxy codone when it's really bad.  Day to day I use a stick and a wheelchair for longer trips eg legoland!  

The pain relief was sorted partly by pestering my GP and then by a referral to the local hospice who are experienced in pain management. I'm going to request more rads to see if that can sort it.  

Dont give up keep pestering until you find a solution you can live with, it's your life, not theirs.

[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