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.
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.
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
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.
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
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).
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
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
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.
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
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
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.
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
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
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.
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.
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
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.
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
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
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.
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
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
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
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
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
Huggs a plenty
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