Hi Finty, I still have slugs and snails in my tiny garden but the hedgehogs have certainly reduced the numbers of them! I don't feed them cat food every night so that they go hunting for them. I am a bird lover too and right now I have goldfinches, coal tits and a robin at the feeders. It costs me a fortune in bird food though as I buy the best for them from the RSBP visitors centre in Fife. But it does attract a wider variety of birds and they keep coming every day to see what is on the menu....I even buy currants just for my blackbirds and robins! Good to see you doing so well. LOve Val
Welcome dgw - glad you've decided to join us on the thread.
Oh Val I'm very jealous of you having hedgehogs in your garden - not least for their capacity to munch through slugs and snails. But with two rather fierce terriers patrolling our borders, we don't get many wildlife visitors (not twice, anyway!).
Hello deadgirlwalking, Welcome to this thread and the site. When I was diagnosed there was no site like this and I felt quite alone at times. Family and friends are all very well but sometimes you need to express your fears or communicate with people who are going through something similar. I didn't "post" anything for a long time and it took me ages to know how the site worked but I did read the posts that caught my eye. Now I am on here most days and drop in and out and read my "saved discussions" first to see how everyone is doing.
I see you live in Scotland. I don't know where you are but I live in Edinburgh. There are a group of young ladies your age who meet up regularly and you are welcome to join us if you care to. There is also a group who meet up in Glasgow and also join in the one here too! Send me a private message if you want at any time and if you want to know how to meet up with anyone.. I am so pleased to read that you have found some comfort in my posts. I was 39 when I was first diagnosed and I remember thinking that I would never see my daughters grow up as they were only 7 and 14 at the time. They are now 28 and 35!
It does give you a different attitude to life. As for stopping to smell the flowers...I was doing that in the wee small hours....watching 2 hedgehogs in my garden tipping up a saucer filled with cat food and even licking the plate! Then a fox visited and cleaned up the bird food I had put out for the ground feeding birds. Now I couldn't do that when I was working. I gave up work when I got bone mets. Do you know you can apply for Disability Living Allowance (DLA) now that you have secondaries? PLease join us on this thread and let us know how you are doing.
Everyone deals with their cancer differently. I am very open and if anyone asks me how I am I just tell them the truth and explain that secondaries do not go away. I am glad you have found us, but sorry you have had to join us, if you know what I mean. Much love to everyone on this thread. Sun shining where I am. I hope it is where ever you are. Val
deadgirlwalking - you sound as if you have the same attitude as I do! A ticking timebomb is how I describe my mets but, like you, I do make the most of everyday and 'don't sweat the small stuff' anymore. Good luck with your current treatment, I too am on similar although had my ovaries ablated 18 months ago so I didn't have to stay on Zoladex. And good luck with the party - may you have many more celebrations 🙂
Sarah - I too had FEC when I had my secondary dx and know how you must be feeling. I had very good results with it and this definitely helped me cope with all the cr@p that chemo sends us! I hope you pick up in a few days (I found that I usually did after day 5 or so) and you can make the most of your 'good' days in between sessions.
And thanks again Val for giving us all hope and inspiration when you have lived with secondary BC for so long x
Hi Sarah - it's good to hear from you, I was wondering how you were getting on - 2 down 4 to go. Hope the FEC se's won't be too bad for you, and you'll soon start to feel that lump reducing. Rollercoaster is exactly what it is - I found about day 4 or 5 on FEC I would get very tearful, and then the next day I would be fine - maybe the steroids, who knows, but it can be frightening to have so little control over your emotions. Take care - hope you get some sleep tonight.
This is my first post on this site. Just wanted to say hello. I am in my (v late!) thirties and live in Scotland. Found out i had breast cancer last summer - breast lumps i'd had a good few years but had been told were most likely fibroademomas. Nobody seemed concerned at all about them and so i wasn't either - up until the point they started to distort the shape of my breast. even then i thought it was more a cosmetic thing. By the time i was diagnosed properly it had already spread to my pelvis. I am on tamoxifen and bondronat and zoladex. Had a mastectomy and radiotherapy earlier this year. It's weird looking and feeling fine but knowing i have this ticking timebomb in side of me. Sometimes i forget i have cancer - but it's always there in the back of my mind, shuffling along behind me like some doom-laden, unwelcome guest! Upside of all this? it has made me appreciate life more. worries and insecurities that plagued me before seem insignificant now. I have cancelleed my pension and don't worry too much about expensive anti-wrinkle creams now! I am trying not to be stresssed and trying not to sweat the small stuff - (easier said than done though) and am determined to make the most of the life i have left. I have pretty much worked full time since my diagnosis - apart from the 6 weeks after my op but feel like my days are flying by too fast and work fills too much time and the weekends are far too short - even more so than they were before! . I want to take some time out to "stop and smell the flowers"!
I am hopeful my cancer is slow growing so i take comfort in stories like that of Scottishlass- People who have lived years with the disease. They are the cases i focus on!! I am planning my 40th birthday soon and am determined to have an even better 50th! People hear so much about those who 'beat the disease' or are 'cancer surviors' or are 'cured'. it's hard to know what to say when that dosen't apply to you anymore! It's difficult when people ask how you are or assume that because you seem back to old self things are going well. I've still not quite worked out what to say, if anything, but at least here i can say what's on my mind and know there are other people out there who know what i'm going through. I have sort of accepted i am a 'Dead girl walking' but i am proud to be walking in such amazing company. xx
Hello Sarlou, Jane and Helen and everyone else on this page.
I remember the fear when I was first diagnosed with BC in 1989, 21 years ago. I worked for 10 years but in 1999 I was devastated to learn that the cancer had spread to my bones. Not only in my ribs but my spine, thorax and pelvis too. I was very ill by this time and the shock of it all really pulled me down and I looked awful. I did ask about my prognosis and eventually was told I probably had a 50% chance of surviving 2 years. However 21 years on ( or 11 since bone mets found) I am feeling better than I did in 1999. I do have to take lots of medicines including morphine for the pain but I have managed to get on with my life quite well. I do have days when I am not so good I will admit. But I never thought I would still be here and new drugs are helping to make my life better. Yes I do have to listen to my body and rest when I need to do so. If I can help in any way please just ask. It has been difficult at times but I am still here enjoying life. Feel free to send me a private message or ask if you have any questions or worries. Love to you all, Val
I would like to say a big thankyou to Finty for all her support. I am feeling ok, bit of a rollercoaster! Just had FEC 2 and am glad to be home. I hope that in a few days time I can be up and at 'em and don't get too tired. Will just have to go with the flow.
Alison - I don't have counselling (yet) but other than that I could have written the post above - I agree with every word. I'm just a year post dx and can't believe how much easier it has got over the last few months. We never know what is round the corner, but living well with cancer is possible.
Dear Sarlou and Janet,
I'm so sorry that you find yourselves in this situation. I was diagnosed with liver and bone mets in January this year. To say that it came as a shock would be the understatement of the year. When I pressed my oncologist, she did give me a prognosis - albeit reluctantly - but no-one really knows for definite what will happen. The early stages of diagnosis are terribly frightening - it's all-consuming - but gradually one adapts to the new 'normal'. This may take some time but the mind and body are powerful and it's amazing how one can eventually process the bad news and then get on to the more positive outlook of'living with cancer'. I have good days and bad days, but mostly good. I've been on loads of little holidays this year and try to fill my time doing interesting things and visiting new places. There are all sorts of treatment for our various conditions and, as we are all unique, some things work, some things don't but there is usually an alternative. I did feel really quite poorly at the beginning of my diagnosis but now, apart from a bit of fatigue now and then, I feel well and strong. I've found these forums invaluable - I don't always post but I love to follow people's stories and there is always someone who will answer a specific question for you from their own experience and perspective. October 13th is Secondary Breast Cancer Day, so there will probably be more information around than usual. By this I mean that there will be inspiring stories from people who are living and embracing life with this condition. It's a long and often rocky road but when I compare myself now to how I was in the first few months of the news, it is incredible how far I've come. I do have counselling at my hospital with a psychologist who specialises in cancer patients. This is 'my' time and I use the sessions to express my fears and concerns. It can be a bit draining at times but it frees up the rest of my time to be me. Although it is a part of me, my cancer doesn't define me. Please take care of yourselves and don't hesitate to PM me or read or post on any of the forums that have relevance to you.
Hi Jane and Sarlou,
Sarlou, I just want to reiterate everything all the other ladies have said. I'm stunned that they gave your daughter a poor prognosis like that, but without knowing all the details, it's not possible to make any comment really. I wish you both well and please feel free to come on here anytime. My friend m1yu who has written to you already has had a really hard time. She is a very young woman and has been incredibly brave coping with all of this. However, she is now doing marvellously well and we're all thrilled and delighted for her. So I guess what I'm trying to say is please don't give up hope and think that it's all over, because there are loads of different treatments available nowadays. I wish you and your daughter the very very best of luck.
Jane, I'm 62 years old and was dx'd nearly 19 years ago with bc. Had a mastectomy, chemo, rads and Tamoxifen. It came back this January in my liver and when I went for all the scans etc. I was told it is also in my spine. I had absolutely no idea about the spine as I had no symptoms whatsoever. I did know there was a problem with my liver because of the pain. I've since had chemo (Taxotere) which didn't help particularly, but I'm now on Arimidex tablets for the liver and Bondronat tablets for the bones. These seem to be working very well as my tumour markers have dropped dramatically and I feel well apart from the aching muscles etc., which are a side effect of the Arimidex. I know that the websites are very scary and I put off going on any of them for a long time. I also didn't know what to do about making plans. I wouldn't even order anything from an Avon lady just in case I died!! That will wear off honestly. I went to Rhodes in June and I came back two weeks ago from a fortnights cruise round the med. I got my insurance from Mia Online (although you have to phone them!!!) I researched a lot of Companies and I have all their contact details if you want them.
I can honestly say that I'm not frightened at all now, I just assume I'm going to live for years and I absolutely refuse to let it get me down - this disease takes so much away from us, it's certainly not going to take my sense of humour, my optimism and the rest of my life away. If I don't live for years, well, it's because my number's up and I won't be doing anything that everyone in the world won't be doing at some point. I have an unshakeable belief in the afterlife which is not a new thing, it's something I've always had.
Well, I think I've probably rabbitted on for long enough, you'll probably think I'm a nut case!!!! Take good care of yourself and feel free to pm me if you wish.
Hope everyone else is well today and that you all had a great weekend. Lotsa love, Dianne x x x x
Thank you for replying I feel that we are not alone anymore but so sorry and sad for you all. I am trying to get my daughter to come on line to meet you. You are a very courageous lady and we wish you well. Sara has secondary spots on her spine pelvis and hip but also both breasts have various lumps with other in her lymph nodes nuder arm and collar bone. apparently the cancer has benn there for a long time but due to her breast feeding up until July the lumps were hidden - she saw 5 different Drs with the pain with no success until a lady doctor gave her a thorough exanination and sent her for scans - the cancer was so well hidden and still is. We have a lovely book called mummys lump toread to my grandchildren.
Take care and thankyou x
Hi Sarlow & Jane,
Welcome to the forum/this thread, but sorry you are here.
Sarlou, I agree what has been said already, it's really inappropriate to talk about life span at this stage. No wander she is scared! It's only a few days since you've got the news, it will take some time for the news to sink in and all of you to come to terms with the situation and diagnosis... we all went through the some process. My bone secondaries (mets) was suspected initially with primary, but was later confirmed during my chemo and zometa was add in due time and it has been doing a pretty good job in controlling it.
Jane, good to know you have a network of supportive friends, it's important that they support you and help you out when you need those. I have both bone and liver mets, too. So, anything you'd like to ask, just do.
I had two 2 kinds of chemo, Tamoxifen in between, which failed. Now on Zoladex and Arimidex (hormonal treatment). I was very very frightened when I was first diagnosed (still is, just not as much). The latest PET scan showed that no active cancer in neither bone nor liver, which was an amazing result. In June last year, when I was first diagnosed, I'd never ever imagined myself in the position today to feel so well and planning to go back to work! Starting 5-weeks radiotherapy a week on Mon, hopefully that'll kill off all those stray cancer cells in my lymph node.
Jane, I hope your AC chemo and Zolandronic acid work for you and you continue to tolerate the side effects. And sarlou, I hope your daughter's treatment will be effective and both of you will get over the initial shock. I also hope that your daughter will prove her consultant wrong. Yes, getting a 2nd opinion sounds like a good ideal.
Take care xx
I'm New to this but here is my story. I'm 58 years old diagnosed with primary BC 6 1/2 years ago. Been extremely well (hiking, horse riding with a full time job) until earlier this year when started to get the some aches and pains i thought associated with age.. imagine to my horror after having a scan I was told I was terminally ill with Bone and liver mets. Bone mets is in the femoral head, ribs, sternum and pelvis. Currently had 2nd out of 6 AC chemo and Zolandronic acid. Tolerating it quite well part from acid reflux and that 'plastic/metalic smell' which seems to follow you around everywhere.I don't know anyone in my situation and most websites have frightened the hell out of me. I just don't know what to expect for the future and whether or not to make any plans (like a holiday..and what about insurance)or how I should be feeling. To say i'm frightened is an understatement...my husband won't talk about it and I don't have any other family. I do however, have a great network of supportive friends, but none has experience of this.....so although they are sympathetic they don't really understand... I'd really like someone out there to share experiences with.....
Hi Sarlou - I won't repeat what nicky and finty have already said. It is sad that doctors give information of the sort your daughter has been given. I have had breast cancer now for 20 years and was diagnosed with bone mets in 2002. At that time it had already got a hold and spread to my skull, ribs, collarbone, all of spine, hips & pelvis. I had no warning really - no pain initially. I was put on bisphosphonates (pamidronate first, then switched to zometa) which has been very effective. Sometimes if the pain is quite bad they can give 2-5 sessions of radiotherapy to the painful areas. I think some years back to be diagnosed with bone secondaries was seen as a death sentence but nowadays there are drugs that are so effective and enable us to lead pretty normal lives. I hope you find it helps to come here and share with us.
I'm so sorry you and your daughter are having such a dreadful time. Yes, I'm afraid if the cancer has spread to her bones it is what we call mets (distant metastases). But please be assured there are people here who have bone mets that have been around a lot longer than 5 years. Of course everyone is different and breast cancer comes in many forms and without knowing any details of your daughter's cancer it is hard to comment, but when I was diagnosed a year ago I was told my bone mets weren't curable but were very treatable, and my oncologist expected me to be around for many years yet. At the moment I am leading a perfectly normal life, after 9 months of treatment. There are very good drugs (bisphosphates) that are relatively new and are very good at stabilising bone mets, with few side effects. These can be given alongside chemo, so I would expect your daughter to be given these asap.
You are all no doubt in a state of deep shock, and it is very scary reading up about a secondary diagnosis. But secondaries in the bones are in many ways more manageable than elsewhere - they can develop slowly, and be successfully managed with radiation and drugs. And some secondaries will just stay in the bones, and not move to the organs. And of course, the rather scary survival statistics don't include the newer drugs that are proving so useful.
I'm sorry that your daughter's oncologist gave such a pessimistic prognosis. I think in her position I might consider asking for a second opinion, if nothing else to make sure that my doctor is going to give everything a go. Maybe a referral to the Marsden? It is extraordinarily difficult at this early stage, but I would encourage your daughter to try and be as involved as possible in the discussions of her treatment. For myself, after the initial shock I found the more I knew and the more in control I felt, the more confident I became - and it enabled me to be more positive in facing things. I've gone on to embrace many lifestyle changes that I hope will improve my chances.
I am fairly new to bone mets, but there are many more experienced ladies here who I am sure will be along shortly to offer advice.
What a lovely Mum you are to find out as much as possible to help your daughter and I'm so sorry she has been given a mets (yes, that is the right 'expression') diagnosis. Sometimes secondary BC is there right from the beginning when a primary is diagnosed and there are several women on here that have had that happen. I'm not sure from what you've said whether this is this case with your daughter or if the secondaries have been found during the course of chemo? However there are many treatments available and this will depend on the type of BC your daughter has either hormone receptive, herceptin receptive or triple negative and she will know this from her primary diagnosis. Chemotherapy can be the same to treat both primary and secondary but if one type isn't showing to work she may be switched to another. After chemo she may well be on hormone therapy eg Tamoxifen or possible Herceptin and almost certainly she will be given bisphosphonates which strengthen the bones (this may start during chemo or asap). I have bone mets which were diagnosed a couple of years ago and, since finishing chemo, I have pretty much got on with life as before. And whilst secondary BC is incurable it is not untreatable. It does depend on the type of BC that your daughter has but it is difficult to say what her lifespan will be, ladies on here with bone mets were diagnosed 7+ years ago - something that I pin my hopes on!
I wish you both well, it must be a terrible shock to you and your family - I know my Mum and Dad were very upset when I had to tell them the bad news. Please come back if you need any answers and hopefully some other ladies will also be along soon to help you. If you need specific questions answered it may be worth starting a new thread as sometimes they get a bit lost in a generic one like this.
Welcome to the Breast Cancer Care discussion forums, I'm sure your fellow forum users will be along shortly to give you some much needed support.
In the meantime I have posted for you below links to some of our publications that you and your daughter may find helpful. Please do also use the helpline here if there's anything you need to talk to someone about. Calls to the helpline are free 0808 800 6000 open M-F 9-5 and Sat 9-2. Could I also suggest that if your daughter hasn't already joined the forums here it might be a good idea for her to join as she'll get some good support here from people going through the same thing as herself, and also give her access to other areas of support BCC offer. Here's the links to some of the publications:
Secondary BC in the bone: http://www.breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTe...
Support for people with secondary BC:
This one for your daughter - secondary resource pack:
Hope this helps. Take care,
My daughter has breast cancer and is currently having chemo but she was called to see her consultant on 1st October and told she has secondary cancer in her bones - hip, spine, pelvis she was then told her life span = 1-5 years. Can anyone tell me if they are experiencing similiar and is this called mets that you are talking about. my daughter is too scared to talk about it so I need to help her come to terms with what is happening to her body. I am so sad for you all but you seem to bring comfort to each other.
Thanks for your welcome and questions. There is so much to tell that it is hard to start. I am on oxycontin foe pain, along with gabapentin, diclofenac, oxynorm for breakthrough and I use a tens machine and am get ng acupuncture from physio. My main problem is fatigue and drowsiness, enough to make driving a danger!
As a result, my gp has reduced my doses and it is helping, except now pain breaking through!!
I didn't think you could have radiotherapy to same place either, but my onc thought I needed it again. I have been quite down recently and tearful, but I have had a better day today which is really good. It is wonderful to have contact with others in similar situations, although under terrible circumstances. Who is the famous brother then??!!
OK, well that makes more sense. Glad you've managed to find an onc with fluent English, at least that's one less thing to worry about. I think it's possible your x-ray results will be inconclusive, in which case you might want to push to have a scan to be on the safe side (bone or MRI).
Hi Thanks, I think I have to wait so long as I live in Spain, My oncologist travels from another hospital to come to ours only on the 21 day cycle, I don´t have a BC Nurse, just him, Also the language barrier, at least he speaks fluent English
I will keep you informed, Love teresa x
I didn't get any pain either - just found my spine met at dx during standard bone scan. I'm quite shocked that you have to wait 21 days for the results of an x-ray - I wonder if there is any way of short circuiting the process?
Don't mind you butting in at all :). I think it is good you have told your oncologist about your rib. So often people go to their GP and they don't consider the bc history. With apologies to any GPs reading here - you obviously are better informed. Fractured ribs can happen if you have had a bad cough or impact from something. They don't alway show up on xrays though. But at least your onc will be making sure it isn't bone mets as well. If it is a fractured rib I read somewhere that it is important to cough or take the deepest breath you can at least once an hour, lol can't remember why!
I actually didn't know I had bone mets - I had been having investigations for a number of lymph node lumps all around my neck & collarbone. During one of the attempts to do a biopsy I was held for some time in an uncomfortable position and the next day I had really bad sciatica. When I told the onc, they had me in for xrays & bone scans and found it had already spread quite extensively - without me being in any pain. It is 8 years now since my bone mets was diagnosed and they have responded really well to bisphosphonates and because I am her2 positive - herceptin as well.
I do hope yours isn't anything more siniser but do let us know how you get on. Sorry it is such a long wait till you see the onc again.
Hi, hope you don´t mind me butting in, need some advice, For the past 3 weeks ivé had pain in my rib cage, no bruising, same side as my operation which was last Dec... Dx grade 3 HR3 16 nodes infected,
I told my Oncologist yesterday, he examined me and found a small lump on my rib, I am awaiting a xray, he also said it could be fractured, surely I would know if I had done this... Or this the start of something sinister lurking!
How did you find out you have bone mets....
Sorry to ask but I wont get the results for another 21 days when I see my onc again...
Thanks Love Teresa x
Hi Val, Dawn and all
Val, glad to hear your hubby has the plaster cast off and that you are planning a holiday - you can't have too many of them.
Dawn, pleased to hear you are starting to get some relief from your pain, let's hope you can get rid of much more of it.
I have started on 25mg of steroids per day yesterday for at least 2 weeks as prescribed by the Dermatologist in an effort to see of this vasculitis that has been troubling me since January!!!! I am just wondering when I will need to start shaving my beard and resembling a German shot putter!! I will keep you posted.
Have a good weekend.
Hi Dawn, I am glad that the new drug is working for you too. As for tumour markers mine are currently CEA 72 and CA125 760. But they have been much much higher so it is all relative to the individual. I know my Oncologist has drummed it into me that we cannot go by my markers alone and there are lots of other things to take into consideration.... how I am feeling at the time for example. I know that I am not ready for chemo yet but as I said before I see it lurking on the horizon....but I am putting that to the back of my mind for the moment. Richard got his plaster cast off today but he was quite surprised that his leg was very weak. His shoe has been made higher but I don't know why they didn't do both shoes because it must feel like walking on a stiletto and a flat sandal ( haha)....but suppose the experts know best.... Do keep in touch as love to see how you are doing. Love Val
Hi Linda & Val,
I started off on Gabapentin 3 wks ago and as advised am taking it very slowly. I increased it from 3x100 to one extra 100 i.e. 4x100 and the doctor told me today to increase it again by another 100 i.e. now 500 a day. She doesnt mind how I do it so am taking the extra around 4p.m. when I usually notice pain increasing. I am finding I get some periods in the day without pain which is fantastic 🙂 but not enough yet. At the same time I have reduced the oxycontin from 80mgs twice a day down to 60mgs but am finding some days I need to then top up with oxynorm. I do find the pain issue is very restricting and tends to tie me to the house now. But then we do have our own business and I can be quite involved in the nursery work without physically doing too much.
I think Linda with your 200mgs x 3 a day that there is still scope to increase it according to my mac doc 🙂 so if it isnt quite doing it for you it is worth asking your GP.
Val I hope when your hubby gets his plaster cast of tomorrow that things are healing well for him My tumour markers don't really tell much about what is going on in my body - they are very steady around 19-25 ish.
Hi Linda (BoneyL),
I was on a lower dose of Gabepentin for a year but now I take 600 mg twice a day. My pain specialist doctor said I could have 600mg 3 times a day but I am managing without pain now with just taking it morning and night. I did it slowly over many weeks but I don't feel any side effects with it and I think it is a marvellous drug. Good luck and let us know how you get on. I am sure the GP will let you increase it like my doctor did. Wishing you pain free days ahead. Love Val
I've had some rads for bone mets at the NCCC Freeman last week, (it hasn't made any difference yet, but hope it does very soon 'cos just like you the pain is getting me down,(by the way do you know who the Consultant Radiologist's famous brother is?). I didn't know you could have Rads in the same place twice, that's interesting to know. I tried Capcetabine recently and found it very doable, just a bit of diahreah and very slight nausea, so hope its the same for you and that it does the trick and heals those bones. Sorry to hear about the marital breakdown, this is a hell of lot to deal with at once. Best of luck with the bone scan.
Hi Dawn, I've been on Gaberpentin for a several weeks now, i've had my dosage uped to 200 mgs x 3 daily but am still getting plenty of pain, what dosage are you on? I don't get any side effects so I'm thinking of asking my GP to up the dosage some more if possible.
Hi Dawn, That made me laugh too. Are you sure that they haven't sneaked in a pacemaker without you noticing! Really gives one confidence in the powers that be! How is the Gabapentin going with you Dawn? Have you managed to increase it any more yet? My tumour markers are on the rise again but no need to start chemo just yet. Hoping to sneak in a holiday of some sorts before that! My husband goes to get his plaster cast off tomorrow so hoping that his Achillies tendon is healing now.....another month without plaster than physiotherapy for him... Hope you are keeping better now that you are on these new painkillers. Love Val
Hi specially to Helen. Sorry to hear you have been having such a rotten time with 2ndary dx and the breakdown of your marriage so soon after the dx. What are you trying to control the pain? I know I have really struggled in this are to control pain and tried a lot of different meds. Am hoping the most recent change is beginning to improve things and hope higher dose will do more. Mine is not hormone driven so I dont know much about those treatments. Are you taken any of the bisphosphonates?
I had a good laugh at my latest report on the scans which goes out to my GP & Macmillan doctor. The observation is made that "Bilateral mastectomies and a pacemaker are seen in situ....." You may well ask what is so funny in that but I don't have a pacemaker!!!! I do have a portacath high on my left side just below my collarbone - is that where pacemakers would be positioned?
Thanks to all who are contributing to this thread. It is good to keep it live so that others newly diagnosed can find us.
Welcome Helen, I am sorry that your are having a tough time of it and you too have been diagnosed with bone mets. I am sorry too that you have had to join us.
I have had radiotherapy on 2 or 3 occasions over the past 10 years and I have been on Capecitabine ( I am never sure of exact spellings either!) and found it did help me and is a quite do-able chemotherapy. I have been on Femara since the beginning of the year and I was on Aromasin before this. If I can answer any questions for you about treatments feel free to ask as I look up the site almost every day. I am sorry that you have had the added problem of a marital breakdown. Please join in and feel free to have a moan any time. Val XX
I have been lurking around for a while reading this thread. I was diagnosed with bc in aug 2007, then bone mets in April 2010. I am just having a third treatment of radiotherapy. The first in May was to my right shoulder, then in July to my hip and spine, now I am just having another course to my right shoulder again.
It would seem Letrozole is not working and after a bone scan this Friday, I go back to see my consultant at the Freeman NCCC Newcastle, and start on Capecetabin (?sp).
It is all very new and I have been quite down and underpar all the summer with pain. The situation is complicated by marital breakdown after my secondaries diagnosis.
It has been very helpful reading the posts on this thread, and I thought maybe I should join in.
Glad to see your news, was thinking about you yesterday and pleased results were positive.It is weird isn't it, of course we're glad there's no progress but the knowledge that we've still got mets means we don't 'feel happy' even when we get news that is a relief!
Have a good day now the stress of waiting is over, love Julie x
Hi Everyone, delighted to hear all your good news, it's so wonderful when scans come back clear and I'm delighted that the Gabapentin is working for you Dawn. Long may it last. My spine mets don't seem to be bothering me at all at the moment, so hopefully the bondronat is working.
m1yu, you already know that I'm delighted for you.
Thinking of you all, have a good day. Lots of love, Dianne x x x
Hi ladies - what great news for all three of you 🙂 I'm so pleased and thanks for sharing it with us - what a boost - especially from Dawn who has been dealing with mets for so long - my inspiration! I hope all the continuing medication for either pain or 'stability' keeps working for all of you (and the rest of us)
Another one with good news - and am pleased for you. I know what you mean about feel nothing. I found with my scans I was prepared for bad news - with some sort of resignation. When I heard yesterday that it was not bad news at all I am not sure what my feelings were. I suppose we all know the seriousness of this disease we have and bar a miracle we still have metastatic bc. What are we like LOL.
Had results of mri's today.
Mets in spine are unchanged and stable. Nothing new. Brain mri clear.
Good news although feel nothing (as usual).
I do recognise it is good news and know I am blessed compared to others.
Isn't it great to be able to share good news. I'm glad for you that it was good - let's hope the rads well & truly finishes them off.
Hello m1yu, What great news for you. I am so pleased that the results were better than you thought they might be. Good luck with the rads and I hope they completely zap the b*gg*rs. Love Val
So happy for you. Hope your pain will be sorted soon.
Can I add to your good news? Just got PET scan results and both liver + bone have no activity at all!!! ONLY 3 hot spots (1 on neck + 2 in underarm area) need further attention. Max 4 weeks of Rads will sort all of them out.
Hi Dawn, I am so pleased that you have found some good pain relief at last, after all you have been through you deserve that at least, and great news about the scan results. lots of love Rozxxx
So very glad to hear your news! Hope the pain starts to improve very quickly now it seems to have started working.
Lots of love Julie x
So pleased your scan results were good, such a relief for you. Now lets hope the pain eases with a larger dose, at least now you are not thinking the pain could be something sinister the scans can put your mind at rest.
Hi Dawn brilliant news on your scans, you must feel relieved to have those results behind you, just get the bloomin pain sorted now,
take care AnnB x
So very pleased you had good scan results..what a relief!!! Great that the Gabapentin is relieving your pain,hoping you don't have to increase it, but good to know you have the option!
Lots of love Mary xxx
Hi Dawn, I am glad that the Gabapentin is working for you. It has made such a huge difference to my own pain control. Don't hesitate about increasing it but do it gradually. Glad the scans did not throw up anything nasty. Keep well. Love Val XX