Glad you have found this site everyone is so kind and helpful. Thought I would say hi as we are on the same treatment. My primary was 17 years ago then 12 months ago found I have multiple bone mets. I had vertroplasty to mend a vertebrae and then radiotherapy on my spine. I am hormone positive so on exemestane and denosumab. Following 12 months on the meds I had an MRI on my spine. The report said some mets were less and others stable showing that the treatment I am on is most favourable. So I am really happy with that and you will find others on here who can be on a hormone treatment for years before needing to change. There are many hormonals to go through and hopefully new treatments on the horizon. These dark days/nights you are having will lessen and life will take on a more normal state especially if you are in minimum pain/duscomfort. Stay strong my friend x
Hello ladies, happy new year to you all.
Janette, that is really good news. So pleased for you. I really hope markers continue to fall and you manage well - lots of people speak positively about the drug so fingers crossed.
edwina - such lovely news. Congratulations - and yes an aim for you now to focus on. Hope the pregnancy is smooth and before you know it you'll be holding your new grandchild.
Sameelee - welcome to the thread. I'm so sorry you've had to join us but we are a lovely bunch who laugh, rant, rave and support each other through everything. Nothing is off limits but beware the moderator if you use inappropriate language!! There is also a live chat on a Tuesday night which you would be most welcome to join - we talk in real time to each other as well as a bcn there to answer any medical concerns you may have.
ladies, I hope you are doing as well as you can. Turning cold down here now - I think winter is finally coming. I love snow, but equally don't want it as I don't want to slip over. It's so embarrassing when 80 year olds are walking quicker than me as I'm scared to fall. But fresh snow is so pretty and makes everything so sparkly. Oh well, let's see what happens.
huge hugs to you all.
Yeyy, just spoke to my bcn and my markers are on their way down after starting on letrozole at the end of Oct, they were 167 then and now 127, really pleased with that as I have been really unsure on how I am responding to letrozole, so hoping the increased aches and pains are a side effect rather than progression! !
Hugs Janette xxxxxxx
Thanks, Nicky, Janette and Marirose, for your kind welcome and reassurance; it was just what I needed. After a day of meltdown yesterday when I was practically planning my funeral, I feel better today and am not letting my head go to those dark places. It is certainly good to know that some of the ladies on here are going strong years after dx, albeit on all kinds of meds. You are right, it is a different reality in the land of secondaries and I am taking time to adjust. I'm part of a forum group from chemo in 2012 and some of us still keep in touch. They are lovely and very supportive, but I'm the first one ( maybe the only one, who knows? ) to have recurrence and I'm in a different place now, sometimes, and I don't want to drag them there with me.
I will be popping back and keeping in touch... thanks again,
Welcome to our Bone Met thread sorry you have had to join us but you have come into the right place there are so many knowledgeable ladies who help when help is needed as Nicky and Janette have said you will find this site helpful when you need it. As for spending nights awake at around 3 a.m you will not be on your own I don't think it will be exemestane give it chance to work but don't worry there are so many treatments that will be offered to you remember we are all in it together. Please keep posting
Love to all xxx
Hi sameelee, you're definitely not alone, even if it feels like it at 3 in the morning! Don't worry, I think we've all been there, those sleepless nights, full of worry. As natalie has said it doesn't mean we aren't there now, just maybe not so often and I'm sure that is what you will find over time. It is early days, as natalie has said, it it does take us all time to adjust to this new normal and we don't know how long each one of us takes to get there. This forum is a source of 'real' experiences which is what I have found so comforting and helpful over the past 8 years I have been part of it. So, although it can make scary reading at times I have found it far less so than some of the general cancer/breast cancer sites that are commonly searched online. We can answer most questions, obviously from our own experience point of view but I have learnt so much from here, and in particular the right to question your oncologist! This hasn't gone down too well at times (after all they are the experts 😉) but it has got me the right treatment. As to hormone treatments not working, well, they do, as I can vouch for as I was held stable for my bone mets with arimidex (anastrozole) for nearly 5 years. However we don't know how we respond to a particular type of treatment until we have tried it which is where you are right now and, again, I think we have all been there. I think it's not until you have your first stable scan result that you can relax a bit so we do understand what this is like. I can't say what is the best way to cope, maybe you would like to speak to someone on a professional level about your anxieties? Or maybe just giving yourself time to adjust? Do keep coming on here though for support and advice. It is a place where you know everyone understands as you will find many, if not all, of your family and friends really have no concept of what secondary BC is.
Hi sameelee3, sorry you have had to join us but welcome.
Your fears, worries and concerns are all understandable and it's certainly not self-pity! It's still very early days for you yet and it is all so scary and overwhelming and a lot to take in. I'm almost 2yrs into my dx in although for the most of the time I am quite positive but every so often the reality of this horrible disease jumps up and taps you on the shoulder!!! Please feel free to rant, moan and off load to us ladies on here, we really all so understand how you are feeling, I would have been lost without my cyber friends on here they have a lifeline for me, always there to help answer any questions or worries I have.
Take care hugs Janette xxxx
To everyone on this thread, Hi.... I'm a new poster! It is 4 30 am and I've been awake since 3..... not sure whether it is he Exemestane keeping me awake or just the worry. Probably both. I've been browsing through the posts here and am finding it all reassuring and scary in equal measure, as was only dx with secondary bc to my spine in November. I had 5 radiotherapy blasts and am on Exemestane and Denosumab, and I've been happy with the improvement in pain levels in my spine, but I keep imagining all sorts of horrible things going on in my body now.... keep wondering if it's already wending its way through the rest of me and then I read that Exemestane hasn't worked for someone..... It is so, so hard..... when I read what some of you are going through...all the various chemos, etc, it takes me straight back to the days when the primary bc was diagnosed.....and I truly truly hated the chemo..... but this time the harsh reality is that there's no happy, optimistic ending, and reading your posts just confirms that this is my future and I am frightened. That's what I'm struggling with, even though I know all the stuff about not planning ahead, one day at a time etc.... I can't help feeling so sad that my family will have to go through the process of watching me deal with this horrible disease, unable to do anything about it. My son is only 23 and worried about his life plans becuse he has no idea how long I'm going to be around. I honestly don't know how you are all managing to sound so incredibly positive. Maybe this is just middle of the night blues? Sorry for the self-pity... not like me normally! xxx
Elily, I did vinorelbine for 5 years. It was by infusion. They don't seem to give it by pill form in US. Also at the time my insurance wouldn't have paid for pill form. I kept my hair and had very few side effects after I adjusted to it.
Edwina, How exciting a new grandchild on the way! I hope I get one some day!
Yes, that is lovely news Edwina. What a great start to the new year and something to look forward to.
Wishing everyone on the bone mets thread, and all those with secondary BC, a happy and healthier 2016.
Lovely news for the new year Edwina. There is nothing like having something to look forward to and focus on. Does she live near you? I have enjoyed the pleasures of having grandchildren over these last 5 years when I never expected to be around. My daughter first had a son and he will be 6 this year and the twins will be 4.
Oh Edwina that's fantastic news, really happy for you. ....congratulations.
Hugs Janette xxxxxxx
Hi everyone, happy new year to you all hope 2016 ix good to us all. Just had good news that my daughter is pregnant with her 2nd child due Sept...hope all goes well and will be around to meet my new grandchild....certainly gives you somethong to live for !
Happy New year ladies, hope it's a good one and him upstairs is kind to us all!
Take care huge hugs Janette xxxxxxx
Happy New Year to everyone on here - I hope that it is a good one for you xx
Thankyou, you too!
Happy New Year all, lets hope for a good one xx
Just to wish everyone here a Happy New Year..........hopefully a good & healthy 2016 for us all! Thanks for all your posts........I visit this thread every day.
Hi I have just started weekly taxol 3 infusions now. Hair just starting to fall out. Been tired but not too bad. My primary breast lump is still with me as diagnosed secondaries from the start 2 yrs ago..it seems smaller already hope that's not just wishful thinking! Good luck with your new treatment x
Just found out that my latest chemo isn't very effective (Epirubicin) so may move on to Vinorelbine, Taxol and/ or Carboplatin (singly or in a combo) in the New Year. Any others who have been on any of these? Consultant says he will try anything currently available before going onto experimental drugs.
I feel pretty well - current chemo has had few SEs - and work almost full time though have now reached retirement age. I lead a pretty normal life and Consultant has always tried to ensure quality of life over gruelling treatment so not looking forward to having to go through a harsh treatment unless some sort of remission is more likely!
Hi stress head, thanks for your info, having pain in my enlarged lymp node and from liver mets so taxol not stopped that although not a week yet. I had four cycles of cape and those pains stopped but skin mets appeared so onc said cape not working although I thought it was, maybe with luck it might be the other way around, i think it's not working and it is....trying to be positive but so down at the mo, maybe the steriods?? My 2 yr old granddson came around today, he said hope doctor makes you better nanny, bless so do I. He did make me smile today with his antics. Just can't see a future at the moment I suppose we all feel a bit like that sometimes. Hubby says positive thinking and live for today , he is a treasure x
Hi Marirose and Marie, thank you for your replies, feeling a little better now. Don't know what come over me I just could not stop the tears!!!
My hubby phoned my oncologist 's secretary Monday and left a message for my onc (she doesn't work Mondays) and explained my worries and about the pain.......well as yet still no call back from her!
Maire I'm glad your feeling better now xx
Edwina, sorry to read that you are struggling at the moment, hope you can get things sorted soon.
Hugs Janette xxxxxxx
hi Edwina, sorry to hear you are feeling down..i know exactly as you feel, as we all do. I have had skin mets since Jan 14 but misdiagnosed and left untreated til August. i have had docetaxol/capecitabine and was told i was in remission and the marks i had left were scar tissue. They were in fact mets which started up again with a rash and then lumps. I now have them covering my abdomen, chest (now ulcerating) and back...nothing seems to be working. I have since had eribulin and weekly taxol, none of which have done any good. My Onc has put me back onto capecitabine but having no effect. I only had about 3 cycles of each before it was clear they wernt working. No one seems to know much about skin mets and, having changed from ER+ to ER-, i dont have many options left. I realise this hasn't helped ypu much or given you any peace of mind. i'm sorry to sound so negative but it doesnt mean that you will be the same. I pray that one of the treatments works for you. x
Hi all, well I had an appointment with my onc and showed her some lumps that have developed on my breast. I still have my primary cancer which has grown enormously because I had to stop treatment whilst sorting out my wisdom tooth problem for about 5 mths , anyway these lumps are peas sized and look like spots but she said skin mets. A bit devastated because for about a year now have not had any good news, now have oung, liver, bone and skin mets and feel that this is the end. I have started weekly taxol and had a pic line inserted. I have only had one dose and yhe pic line wouldnt work cos it had a clot which had to be desolved . It took all,day but still didn't work so had to back the next day (Friday ) to get chemo. The pic line worked after free it up with some prescription . Yesterday went back to see onc and have blood test. Same thing , pic did not work so 8 hours later they took it out. Had to sit there waiting feeling anxious but they said they would fit a port in the new year. Sorry for going on because what i really wanted to ask is that onc asked if i had noticed any change and i hadn't but it had only been 4 days since treatment. She said I should notice something by next week. Now feeling it's not working and she said skin mets worse, all this in a week. Can anyone let me know how long it took to show changes on taxol, feeling so down in the dumps!
I have terrible trouble with leg and hip pain sometimes the right leg suffers from the MS but both legs are playing up. I have arthritis in both hips the right being the worse nothing was said about this when I had my bone scan results. I have now got new mets in both femurs and left tibia also left pelvis. I too don't like taking pain killers I feel when the time comes when I really need the strong stuff I will get relief. Now I use paracetamol with codien when it's really bad but that is usually during the night when the pain wakes me up. I know I can go 4 hours between dozes but I wake either 2 or 3 o'clock and thats all I need normally I stick to paracetamol. Oh and for some reason my right tibia has been hurting when that is clear work that out.
My walking is getting worse and I do need the aid of my walking stick and rollator I do have a wheelchair and scooter but I prefer to walk if I can you know the saying 'if you don't use it you lose it'
I do hope this helps you and don't worry about ranting or moaning we can do it here because we are amongst friends who understand. So wishing everyone a pain free night. xxx R
Hi ladies, hope you're all keeping well. really sorry to jump on and have a moan as I know there's quite a few ladies struggling at the moment.
I have had a major melt down this weekend, still struggling with pain in my hip/leg it never really goes but some days are worse than others and it is really dragging me down now, I'm usually quite upbeat and positive with regards to this horrible disease but I feel it's getting the better of me at the moment, and I am soooo fed up of people saying that I need to take stronger pain relief. I don't want to do that and mask the pain I want the new treatment to work start working so I'm not going to get the pain!!!!
Sorry for the rant but I know you all understand me
Hugs Janette xxxxxxx
Redpark "Just in reply to someone who reported that there onc said that a biospy of a tumor in the bone hurt too much to make it worth doing."
I think that may have been me. I was a little surprised when the Oncologist told me this as I think my son had a bone marrow biopsy (he has a form of leukaemia) and then went shopping in the sales straight afterwards! I can only suppose that the Oncologist didn't think it was necessary for me to have the test at the moment whilst there was a chance that my current treatment (Epirubicin) was working.
Hello ladies, havent posted on this thread for quite a while but do read all of your posts.
I wonder if any of you can help. I have skin mets and so far docetaxol/capecitebine, eriblinand weekly taxol have failed. I had discussed having the latter along with avastin but then was told i couldnt because the CDF say its only for 1st or 2nd line treatment. My onc has now ptme back on capecitebine. I woild like to know if any of you have had this in combination with anything else apart from docetaxol. My Onc said there was nothing but i'm sure i have read about it somewhere. Hoping you can help. Many thanks x
Just in reply to someone who reported that there onc said that a biospy of a tumor in the bone hurt too much to make it worth doing. Well I had a biospy in my spine and they gave me lots of local and I just felt mainly pushing. I took some paracetmol for about 24 hours afterwards and just had mild pain.
HOpe that helps anyone thinking of having a biospy. My status had not changes, but at least I was reasured that it had not.
I agree with Julie maybe now you will be able to move on lets celebrate your new found strengh at the Cafe with a bottle of bubbly.
Janette I was on Letrozole and found it easy but after a year I had to come off it because it stopped working. I do get quite alot of hip and leg pain and resort to paracetamol and if it got really bad a codine as well. Until I started with this dreaded decease I never rated paracetamol but it's been a good help but needs to be taken regular. Take care I hope you get some relief.
Waffles I am on my second cycle of cape and it seems to be going ok (touch wood) I do hope you go on alright.
I do hope everyone is well and ready for Christmas I must admit I am having difficulty getting in the mood I am sure it will get better. Best wishes xxx
Hi ladies, just been reading through the recent posts,Edwina, waffles, Law, Paula(mum and mother in law) sorry to hear you are struggling at the moment it always seems to feel worse at this time of the year too doesn't it.
Edwina I can totally understand what you mean about losing your hair, I know in the grand scheme of things we shouldn't worry about that but it is a woman's crowning glory isn't it, this is something I've always dreaded, but there are fantastic wigs these days we can get, good luck with your treatment.
My worries seems trivial really and don't want to drone on but I'm still struggling with letrozole, I'm now on my 7th week and hip and leg pain no better and also getting more hot like stabs in my ribs. I spoke to my bcn about it last week and she spoke to my onc who said she would like me give things a bit more time, all they seem to talk about is stronger pain killers but I don't want to just mask the pain I want it to go away! I love this time of the year but can't seem to get motivated as i just feel so tired and achey all the time.
Take care ladies Hugs Janette xxxxxxx
I am on one of the trials using cabazitaxel (think there are a couple currently running - what's the name of the trial?) and have had good results so far.... Let me know if I can help further.
Marie, I'm so pleased to hear you found the strength to phone the hospital and to see your GP, well done. It sounds as though it was worth it and everything crossed this has now sorted out the problems. You are bound to be feeling rsther drained and terful, it's all extra stress we can do without but hopefully your next appt will go smoothly and you can start to relax. Thanks for letting us know, be gentle with yourself and here's a big hug for you xx
Hello , to all my lovely friends , just want to update the wonderful ladies who helped me on live chat last night.
I phoned the hospital and wait for it ..... an apology . Things are going to change , I have been given an appointment and promises of changes. Went to GP , who was wonderful and is going to keep an eye on things. Feeling drained and very tearful , but hopefully things are going in the right direction. Apologies to everyone else , this probably isn't making sense , it is a long story.
However, thank you BCC for being there for us and thank you everyone , I really don't know what I would do without my cyber friends.
Just wanted to say two things:
I I've been on Cape for several months twice over and found it a relatively easy regime apart from the foot/hand problem which required industrial amounts of cream! I was worried when I first started it as it was chemo, but I managed to live and work normally whilst on it.
2. Why don't more people with SBC get offered the opportunity to have a Portacath fitted as a matter of course? I've had mine for two and a half years without problems and it is so easy for nurses (provided they have had the training) to use for chemo, blood tests and blood transfusions. Leaves both hands free when you are having treatment too! I would have hated to have put up with "trying to find a vein" every time I went in for a test and I'm sure that the initial cost of a very minor op to insert it is outweighed by the immense time savings for nursing staff.
Firstly, Law36, I hope that your Mum does get some answers and that the new Cape regime she has started also treats this area in her jaw. There's no reason to assume it won't as any chemo is systemic ie goes through the whole body, rather than targets one specific area (other than brain). Good luck and hope she is able to pick up strength by getting back to eating.
Waffles, sorry to hear you now have liver mets. I also developed liver mets after having bones mets for a number of years. One thing I learnt from this forum that helped with my treatment is that my receptor status had changed from HER2- to HER2+ and this has meant I am on different treatments now than I would have been if I had stayed just hormone positive. This change can be in up to 20% of BC, 1 in 5, so it's not as uncommon as people, including oncologist's, think. I'd ask for a liver biopsy to be done if possible as this will determine the current receptor status of your BC. I had one done once I had started Capecitabine so it doesn't need to have been done beforehand. It's an uncomfortable experience, I won't lie, but well worth it to make sure you're on the right track treatment wise. I found Cape quite doable once my body adjusted to it, which took a couple of cycles, and stayed on it for 18months until I needed to change to Herceptin.
Paula's DIL, you sound like such a great support and I'm sure you're MIL appreciates everything you have done for her. I can't help you with the trial drug and you may not get much of a response from others on here as its obviously very new however you could always start a new thread with the drug name in the title and someone might pick it up rather than read about it in the bone mets thread? Also if your MIL's veins are rubbish, like mine are, she could have a picc line or even a portacath fitted if she is up to it. These make the administration of infusions a lot easier.
Paula liked the freedom of having tablets rather than the IV as veins are pretty much shot....
Sorry meant tio say law 36....always was useless with numbers!
Hi everyone thanks for your info it is much appreciated. I had my pic line fitted today, much more of an op tban I realised, then I got my wig which I must say was sooo much better than I thought it woukd be. It was nhs sorted out by macmillon. I skyped my sister and after a while I asked what she thought of the wig...she was so surprised she said wow I didn't notice any difference , silly to worry about your hair as it is the least of our worries but I did feel a bit better. So start dreaded chemo thurs.....watch this space. Hi law34 I has issues with my wisdom tooth whilst on denosemub and had to stop whld I had my tooth out. I then got a numb lip and chin which I was told could be a cancer spread so had to have lots of scans before the tooth extraction. Thet said it wasn't cancer but one onc said it still could be a it is sometimes subtle? whilst I had this I heard from a lady in Australia on this forum who said she had a tumour in her mouth which gave her a numb lip and chin like me and chemo had sorted it out and after nine months she was a lot better. It's not that common but there is treatment so don't despair, Its all a roller coaster but give your mum a hug from us hope she gets treatment soon it always feels better when your treatment starts xxx
I am posting on behalf of my mother in law Paula. Paula was first diagnosed in April 2009 with breast cancer involving several nodes. After 6 cycles of FEC, a lumpectomy showed unclaer margins so ended up having a masectomy. This was followed by radiotherapy. It took a long time to come to terms with the diagnosis, and had counselling and hypnotherpay to deal with it. All seemed well and Paula decided to have a reconstruction. Chamapagne was popped into the fridge and off they went to hospital. Excitment was cut short when the surgeon found further breast cancer high up in the armpit area and the operation was abandoned. Taxotere this time for 6 cycles, and a new wig. Hair was just starting to finally grow long enough to go without a wig when rountine scan showed recurrence, and so back on further taxotere x 6. A scan at the end of treatment showed everything to be all as it should be but there issues with pain in the ribcage area. Lots of talk about possible osteoparosis due to all the chemo, but after pushing the consultant, a bone scan showed mets in ribs, and lower on the spine as well as high up by the neck. This thread is what gave us all hope and I have come back often to see how everyone has got on and reported back to Paula! There have been lots of issues for Paula whilst on cap and has had to take several breaks. It seems to affect her magnesium levels, and has had to go in weekly for some magnesium via IV. Also problems with fluctuating temperatures, at one stage she was put in an isolation ward as suspected TB (still awaiting results). It was getting to the stage where she was very poorly so decision was made to stop the cap, as was having problems with vision, headaches, and weakness on one side, along with loss of speech. Updated scans have shown spots of breast cancer in liver, bowel, lungs and now meninges. Oncologist had given weeks, but due to excellent response to steroids, has suggested a new drug trail called cabazitaxel. Does anyone know of anybody else trying this or had a similar prognosis and been able to turn it around? We are all on such a roller coaster... big hugs to all, youare all so amazing and compassionate. I wish Paula would log on but she prefers to leave it to me to read out posts to her that I think she would be interested in x
Hi Waffles, sorry to hear you have progression, good luck with the cape, I have no experience of it so can't really advice you but will be keeping my fingers crossed for you.
Hugs Janette xxxx