Thank you Nicky......I think I have only come across 1 lady on this forum who had SIRT. Will post when I have had it done. I have caught a rotten head and chest cold (from Hubby.......although I wld like to say wish it was from James McEvoy......will bring him to the cafe!!) so it explains the headaches etc. Love to all you lovely ladies xx
Morning ladies, sorry for my absence, just needed some time away to gather my thoughts and totally relax. Feeling a lot better now and ready for the last two weeks before going back to work - the time goes so quickly. Welcome to all the newbie's, sorry you've had to join us but what a marvellous group we are, even if we are a bit mad at times. I know yu will find the support you need here, there's always someone who will be able to help you.
Off out visiting this morning but will be checking in now on a regular basis to catch up with you all.
huge hugs to everyone,
Hi everyone....well I had my wisdom tooth out at last yesterday bit sore today though and still have numb lip and chin. At least it's done now as waiting to go on to cape but can't have it till tooth has healed. Hosp dentist was really good but waiting for it to go numb left my knees knocking! Took it out really easily so on the mend now I hope. Xx
You can send a PM (private message) by going to the 'Messages' tab alongside the 'Sign In' button at the top of the screen. You just have to put the person's name ie nicky08 to then write a messsage that no one else can see as it goes directly into their inbox, hope this helps!
It's good that you had your receptors status checked as it makes such a difference to whether you are on the right treatrment ot not. I've not heard of the chemo you are on, probably be because it isn't used normally for SBC. However I have heard of SIRT which I think is the radioactive beads that ablate the liver lesions. I hope both treatments are very successful for you and you don't have too many side effects. Do let us know how you get on and if any of us can offer support although I don't know of anyone who has had those treatments.
Hi Nicky I am never quite sure how to send a message to you so replying to your post! Hope you are well? I just wanted to let you know that after you said about the receptor status changing, I have had some fluid drained from my pleural effusion and my status has changed from ER+ to triple neg. Was hoping for HER2+ but at least I know where I am at! No wonder none of the treatments have worked this year. It's a good job I took your advice.....thank you. I am currently having Folfox chemo (usually for bowel cancer) because apparently it works with SIRT which I am having on 25 Aug. I have headaches and coughing up a little blood so worrying about that but hopefully it's side effects. Had scan 8 weeks ago and all was ok apart from the liver mets had grown, hence having the SIRT. Take care xx
Podry try not to worry too much ( easier said than done ) the terrible pain I had in my shoulder turned out to be a rotator cuff injury, I was convinced my mets had spread to my shoulder!! My onc said I know it's a bit drastic but go to A&E and tell them your in agony with your shoulder and because of the fact I have mets they will do an MRI and you will get the results straight away which I did and they gave me a cortisone injection.
She said even if she requested an urgent MRI it would take 2 wk, it was a long day sat in A&E but worth it as at least I got peace of mind. Hope this helps, I know your mind will be in a whirl at the moment and you won't be able to think of anything else until you have some answers but please try to carry on with your life as normal as possible.
Hugs Janette xxxxxxx
Hi podry I had a shoulder prob but after bone scan was told bone mets straight away....if you have arthritis or similar maybe thats not so easy to tell. After your mri you could ask your onc to see you a few days later . I had scan (ct though) and got result in 2 days Waiting is the killer your mind works overtime fingers crossed for you lets all hope all is ok xx
Hi everyone, thank you so mich for the warm welcome; to recap I was told on Tuesday evening this week that It was very likely that I had a bone met in my shoulder. There was to be a discussion with the oncology MDT yesterday... Well call from GP says the out come from that was 'it is not difinitive' and I have now to go for an MRI to further establish what is going on. They do know I have an extensive rotator cuff problem with calcification etc which is what is causing the pain? Rheumatology appointb18th Aug, hopes of steroid injection to alleviate pain and get me back into action.
On the one hand; I am delighted to be offered a ray of hope - on the other (two hands actually); I am 1) worried that the bone scan is inconclusive because the nurse did not seem to inject the full contrast nuclear liquid before the scan, I'm sure there was some left in the syringe...am I being paranoid? And 2) since yesterday mid morning I have developed a really painful lower back; a 'drawing/pulling sensation down my spine and around my sacral area, particularly when I need to move my legs while sitting or getting down to sit or rising from sitting also at its worst is bed trying to change position. My mind is working overtime now - do I have soft tissue secondaries causing pressure on my spine etc etc... Did that nurse mess up the scan by not using all the contrast material? Am I really just going off my head!?
I am worried it is a secondary, I am worried it is a secondary and its being missed, I am worried there is soft tissue involvement not identified...I am essentially just, well worried 😥 about everything.
MRI scan in 2 weeks a likely further week for results, meantime I am still off work and I have applied and been successful in a new job application, one which I want to take but I had to come clean about what is happening - to be fair they didn't dismiss it out of hand so it may go ahead, watch this space.
Suffice to say, lots going on, lots of worry and distress - sigh. Welcome back Audrey to BC world. 😫
Thanks Nikki, today's eighteenth went relatively well although she was a little sh*t at one point and I had to decide to react or let it go... It should be all about her but she was being kinda mean and I am feeling vulnerable. My Mum instincts won and I let it go 😊 felt proud of myself. Sh eseems to have had a wonderful day 💖 so pleased. See me new post - I will post after responding to other's messages to me.
I know what you mean about every ache and especially when it's in an area that you know you have bone mets. Sometimes my back is so achey but I've realised this can be down to what I've been doing recently and also if I've had a change in the brand of hormone tablet. I'm currently on letrozole and some brands cause extra side effects whereas others just have the expected ones. I wonder if that's the same with tamoxifen, which I've not had since 2003 after my primary and at which time there were no generic brands.
Ive seen you mention your TMs a number of times and that they are slowly going up. I'm sure your onc is keeping a close eye on them and with a scan coming up soon hope fully your mind can be put at rest. If you are really anxious can you get the scan brought forward a week or so?
Sorry I can't offer anything more than this, other than a hug and hope you get some good answers soon.
Ladywolf ring your GP for advice and see if they have your blood results there before stopping. It was my GP that advised me when I asked for a repeat prescription and we had a chat xxJanetxx
Morning ladies on this very wet and miserable day!!
Nicky I want to ask your advice on something because you seem to be quite wise and clued up on this rubbish disease! When I was first dx with mets last year it was because I had pain in my hip for months that wouldn't go, after dx and when my treatment plan was put in place and some radio on it it really settled down but since earlier this week it has started up exactly same and I am starting to get really worried again 😣 my TMs have been slowly rising but scans stable and my onc asked me to go and get them done again in 3 wks which I did yesterday but it's going to be 3 wk til I get results from that!! She did say that she may change my tamoxifen to letrozole if they are still rising, I'm just worried that my scans are either not being read properly or that they are just missing something, sorry for the ramble just getting in a bit of a tiswas about it.
Hugs Janette xxxxxxx
Hi C, for the life of me I can't remember your previous login name!
i hate the big AdCal chewable tablets and they used to make me feel nauseous. There are two options, you can get dispersible ones ie they dissolve in water for a fizzy drink or you can get caplets that you swallow just like a paracetamol. Both of which should/will be available free on prescription either from the hospital pharmacy or your GPs. Alternatively don't take them at all! I don't and my calcium levels are always in the normal range. There can be dramatic changes to your calcium levels but as I get blood tests every 3 weeks I am closely monitored.
hope this helps.
Hi C I have never had a reaction to my calcium tablets I take 1 twice a day so I take one in the morning first thing and one at night last thing. The tablets are Adcal-D3 chewable fruit flavoured. My sister-in-law found she couldn't take them because they made her feel sick so she now buys hers from Boots where she swallows them instead of chewing them. Maybe you could have a word with your BCN they may have a solution for you. Best of luck with it. xx
Hi podry is is difficult with family....my husband says if you worry about tomorrow you spoil today wise words but hard to do feel guilty for feeling down, my daughter 39 calls lots of times every day and tries to second guess everything but she does support me and her son 2 yr old Ben takes my mind off things he is a delight. .My son is 43 and he tries to support me but really just panics but they do get sort of used to it, itviscearly days for you xx
Edwina, how annoying, I'm sorry to hear about the mess up with your scan, I truly hope it is all ok but like me you will have to endure the waiting! You have all been so welcoming, thank you. I will update once I eventually get to speak to the doctors. Oncology specialists.
Edwina pleased you've got part good news don't know why they just do one thing when they've got you there. Apart from the worry it's a waste of nhs money too. Fingers crossed you're not too much longer and it'll be positive result and you can say goodbye to that awful toothache xxJanetxx
Hi podry I was diagnosed with breast cancer with mets to the bone together sept 2013. Now after e/e combo have mets to the lungs as well but as yet this hasn't caused any breathing difficulties . I am supposed to be going on cape but have had toothache for 2 and a half months now , stopped denosemub and have to wait to get tooth out. I developed numb cnin syndrome and had to have a scan to see if ache was cancer spread . After lots of worry I finally got scan on Monday but the only scanned my jaw and not the whole head!
Apparently organised by the dentist. Went for the results today and was feeling v scared, onc said not in the jaw hurrah! but sorry should have had a brain scan to see if the ncs is caused by spread to the brain....so back in the mire again! Can't have cape till the tooth is out and healed so even the onc was worried how long it has been with no treatment. Anyway getting the toot out and hoping it will heal soon and can then going on cape whatever the scan shows. Has anyone had ncs from brain mets? Worrying about this now. Feel a bit more hopeful that it might be due to the tooth...hope,so. Sorry rambling on again but you get built up for scan results.
Sorry to welcome you on the SBC threads - we are a friendly bunch & feel free to ask any questions you may have. I see Nicky08 has already replied to you so you have some good advice already! I was diagnosed with primary bc & secondary (bone mets) together in Dec 2012 followed by liver mets in Sep 2014. I get along pretty well at the moment, the first few weeks are the worst and then once you have a treatment plan everything becomes more the 'norm'. Like Nicky my receptors changed & I became HER2+ so could have herceptin. I've been on tamoxofen, letrazole & now on exemestane, with herceptin, zoladex & denosumab - all of which I find quite tolerable at the moment. Also had 6 cycles of docetaxol to shrink the liver mets which it did!
There is always lots of help and support on here, I don't post very often but always try & read as many posts as possible.
Take care, love Helen x
Hi Helen, thanks for that, I also have mets in my ribs so maybe that's what is causing it, I'm pretty sure I will be seeing my onc in the next few weeks re: my markers results so if it is still happening I will mention it to her.
Thanks Janette xx
Hi ladies, just want to pick your brain?? Been feeling a bit tight around my chest/throat area for about 4 or 5 wks now, it's a bit hard to explain really, I wouldn't say I was breathless it's more a dry tight feeling with a bit of a cough. Don't want to get paranoid that I may have progression to my lungs 😦just wondering if anyone could shed any light on it?? Had CT about 6 wks ago and it was stable although markers have been rising slowly and have got to have them re-done tomorrow, I think I remember reading something about denosumab causing breathlessness and was wondering if it was maybe that?
Hugs Janette xxxx
yes, it's completely under the skin so you can do anything you'd like including swimming etc. it also doesn't need flushing unless it's not used at all for more than 3 weeks in which case they just run some saline and small amount of a blood thinning drug through it to prevent blood clots. If it's not used at all, or won't be after IV treatment has finished they can remove it. Some ladies with primary BC have them but not usually as they aren't needed after the initial chemo part of treatment. Definitely worth considering /asking about, also the nurses prefer them as they are quick to use.
Please feel free to ask any other questions about this or anything else, especially once you know what the treatment plan is. I think all of us, as has been said already, did find it easier to cope once we knew what we were facing or dealing with.
Hugs to your daughter for her 18th on Friday, my YD had her 18th about 10 months after my SBC diagnosis and she had quite a melt down so be prepared, it's horrible what they have to go through, which is the thing that's gets to all us Mums.
Hi Nikki and thanks, yeah, I need to know all that I can. Not taking it all in yet and it will be weeks before I will be up to speed! Thanks for the explanations much appreciated. Loving the idea of non IV type treatments. I had a hickman line before and got infections in it...twice! Hoping ther is an alternative if necessary as it was rather unpleasant having it fitted. It foes into you jugular and the tube is then brought under your skin and out onto the chest wall. The whole 'dont breath again till I tell you you an' is awful probably only seconds but really scary! Showering etc was always a pain the butt. Can you bathe, shower, use saunas etc with yours in - thinking quality of life here too! Lol
Hi podry, you sound like me, needing to know everything so you can understand. This forum has been so good at educating me about SBC when I was initially diagnosed in 2008 with mets and since then. I would not have known about receptor status changes if I'd not read it on here and I would therefore be having the wrong treatment. It has helped me challenge some of my oncology teams decisions or views at times and I'm sure I'm seen as a pain in the @rse but who cares, I've only got one life and I'll fight as much as I can to get the right treatment.
Regarding zometa it's one of the bisphosphonates group of bone strengtheners and some ladies are on it as it is working well for them. Others, like me where I had progression in my bones, have been switched to Denosumab which is the latest type of bone strengthener, but not a bisphosphonate. It is given as a subcutaneous injection every 4 weeks so doesn't involve hunt the vein. If you do need to have a form of IV treatment consider a portacath which is a device implanted under the skin, usually in the chest wall, through which the IV treatment can be given, also bloods can be taken from it but normally only by trained ie chemo nurses. I had one fitted about a year ago and it's no problem at all plus it's completely sealed so there's no risk of infection from going about your day to day activities. - which is something we all need to get on with.
hope you get some answers soon and they are better than you are probably already imagining!
Hopefully it is anemia that is causing your breathlessness Helen_12. I'm just new to this situation but I am a nurse (mental health and health visiting) I also know that it is a possibility with bone mets. Hope you feel better soon. X
Hi Podry Sorry you're here but as everyone else has said once you get your head round it and a plan things will settle down. I have mets in spine was diagnosed after unrelated pain in knee and bone scan found it 2 years ago. Had nearly reached my 5 years from first diagnosis. This forum helps you realise there are lots and lots of treatments and someone can usually help. I'm just having a blip at the mo am on letrozole and zometa but wasn't drinking enough so developed high calcium. Am now slowly on the mend again and just visiting the group even when I don't feel like joining in I know I'm still supported. Good luck xxJanetxx
Yeah, I have been on hormone treatment since my chemo ended first time, never had radio so that's an option. I already had Herceptin 1st time around too also after chemo so I am aware of that (I had to pay £5k for my first two treatments as it was new and very expensive so NHS wouldnt pay for it even though my oncology consultant wanted me to have it - I won my fight and they paide the rest - didnt pay back what we spent thoug. I suspect that is why I have had 10yrs cancer free) also had 2 yrs of Zoladex (chemical hormone ablation). Mine was, well, is; Er+Ve, PR+ve & Her2+ve. I also have had my ovaries removed voluntarily when having a hysterectomy due to massive fibroids caused by Tamoxifen... It's a real bam pot this disease isn't it? Good to hear herceptin is no longer IV 👍 since I have no veins left 😱 any IV needs to be done through a hickman line. Pertuzamab is new ro me will so have a search to learn more abput that. Just this awful waiting for the next step... A call fromGP or hospital abput the next step - an appointment with oncology to discuss treatment and confirm the diagnosis and discuss the way forward.
It is so encouraging to hear people with positive stories, I am sorry to hear though of so many people in this awful position. Thanks tomeveryone for kind thoughts and support. Much needed. 😊
Hi podry and welcome to the place none of us want to be in! However you have alrwady had excellent advice from some of us and I'm sure more will be along soon, it's a bit quiet on here at the moment with possible holidays and /or family times. I'm a bit absent at the moment due to a pending house move - why I need that additional stress I do not know!
The forum is a bit difficult to navigate, quite different to when you used it before and this is only a recent change which, for me, is causing loads of typing issues as I use an iPad and it doesn't seem to like those, so don't worry about any mistakes etc, we'll know what you mean.
i have been living with bone mets for over 7 years now, diagnosed nearly 5 years after primary for which I had an excellent prognosis - so there's no telling when it might rear its ugly head again. I have done very well In those 7 years with no pains and have been on bone strengtheners all the timers well as hormone treatments and sometimes chemo. Two years ago I was also diagnosed with liver mets and found that I had changed from being HER2- to HER2+. This has opened up a new angle for treatment some of which wasn't even being used when you had your primary. I'd say for definite you will have Herceptin, possibly with another drug, Pertuzamab, which is very new. Herceptin on its own is now given as a subcutaneous injection so none of the IV palaver but if you have Pertuzamab as well, like me, you do have to have the IV palaver! Hopefully you will get a treatment plan soon and I would imagine you would have a CT or similar scan to determine if the one bone met is the only sign of SBC. Come back at any time to ask questions, there's usually someone who has had the same experience and can offer advice and all of us offer support.
Thanks Natalie, still trying to figure out how to navigate the site, it is very different feom it was 10 years ago! Have spoken to all my immediate family except Dad who I will be able to see today, I had not talked to him at all about the possibility somits gonna be a bolt put the blue for him, feel bad and wish I'd told him something sooner. I will keep in touch - these forums reallynhelped me in myndarkest places at the startbof my journey 10+ years ago. I amglad to find they remain and are still supportive. Thanks x
Hi Podry, glad we could be of help, we all understand that thick fog you are in when first dx....I had never heard of mets before last year!! To answer your question about scans, I have a bone scan every 6 months and CT every 3 months but every oncologist works different so this doesn't necessarily mean the same will happen with you, my mets are to my hips ribs and spine.
Good luck with everything and keep us posted on how you get on.
Hugs Janette xxxx
I was diagnosed with multiple bone mets 6 months ago 16 years after my primary and I do understand your feelings of shock and dispair. However.....these days bone mets are much easier to control with hormone meds and bone strengthners as Natalie said. Ladies with bone mets are living for a long time and many working full time, travelling, socialising as before. Also with one bone met only your prognosis should be very good I think it may be called oligometastases when there is only one met to one organ and carries a favourable prognosis.
Be kind to yourself
Hi Podry, sorry to hear you have had some rubbish news today. I was dx with bone mets in March last year 7yrs after my primary and to say it was a shock is an under statement!! Give yourself time to absorb it and jot things down that you might want to ask your oncologist when your appt comes as I'm sure your head is in a whirl at the moment. I was put on tamoxifen last year and I also have denosumab injections (bone strengthers) which also help with pain and I have zoladex injections to put me into menopause (I'm 47), touch wood I have been stable since my treatment plan started and I am living a relatively happy normal life, I also had a rotator cuff injury a few months ago so understand exactly what you mean about excruciating pain it was horrible they gave me a cortisone injection and that did the trick.
Take care hugs Janette xxxx
Hi folk, head in a spin, just taken a call from my GP regarding some bone scans done on Friday. Not 100% yet but likley to be a very early 7mm bone met on my shoulder, a coincidental finding following xray to explore the cause of unexplained excruciating pain in that shoulder - Which now appears to have been entirely unrelated as likley due to a rotator cuff problem which was also identified on the scan.
I have to go back into 'the system' oncology etc to further explore the images to confirm for sure and discuss treatment.
I was dx with primary bc 10 years ago in April '05 aged 39 years, ductal with lymphatic and vascular invasion within the breast, radical mastectomy, no lymph node involvement, no radiotherapy EpiCMF chemo for 7 mths, 1 yr herceptin, 5 yrs tamoxifen and was about to complete a further 5 years of Extamestane - Arimadase inhibitor.
i am in a state of shock and not quite getting my head around it, sounded like GP was gently bringing me to the realisation that this is a met...only one and small. I have so many questions - mainly how long will I get?
i turned 40 during treatment and seems I will turn 50 in Nov doing the same thing.
sorry just seem to be rambling - trying to process my thoughts and situation. Id welcome others thoughts and relevant experiences of how quickly this progresses.
Thanks for listening.
Hi Lynq it's great to hear you are stable and doing well no guilt allowed it bucks us all up hearing good news.Ncs means numb chin syndrome....very wierd half my lip and chin are numb. Enjoy your wedding and also funny face glad you sorted some of your problems. Put sbc out of you minds for the day and have FUN!