I spoke Val later Saturday evening and she wanted me to let you know that she's been having a rough time. She told me she thought that this maybe it and she's taking each day as it comes. Val said that she made of sterner stuff and she's hanging on in there.
Val told me that her GP has taken over all her care at present and has taken her off most of the medication she was on.. He has reduce her pain killers and nerve meds too. She feels that she was 'toxic' with all the medication and chemo's shes been on and has felt better since. Val said she has a real connection to the GP and he reminds her of her husband mannerism. He has organised all equipment Val needs a hosptial bed with ripple mattress which she says is very comfort and other aids. Val said she very unsteady on her feet at the moment. (Her husband's a real gem and through Val's post/chats sounds a star) What is rare is he's been visiting Val every day; something that doesnt happen in this neck of the woods,
Val has her daughter's with her and they sound amazing girls and have really been looking after their lovely mum. She feels well supported and loved by her girls and her husband.
Val wanted me to let you all know that she is thinking of you all and sends her love. I think I only managed to get through because one of the girls picked up my message. She said she hasn't used her phone much and the battery has run down.
I feel very privileged talking to Val, we had a giggle and in all the years we've been 'chatting' it was the first time we spoken.
A massive wrap around hug for you lovely ladies.
Val, so sorry to hear you're struggling at the moment. You have been such a light to me from my first postings on this site, your wisdom, warmth and honesty have helped me come to terms with this bloody crap disease.
I've just been told the BC is now in my bone marrow, had blood transfusion on Friday and start new oral chemo tomorrow. Through your posts I'm determined to keep going, doing all the things I've always done and living - you've taught me that and to never to give up - make life difficult for the nasty little BC sods!
Much love to you and Chris.
So glad you were able to talk to Chris and let her know just how tough a time you have been going through Val. Your GP sounds like he? is one of the old school - how things used to be when GPs had time to really show how much they cared for their patients. Let's just hope that he is getting it right and more importantly getting you back on your feet again. You are one heck of a lady - and been a friend to so many here over the years - now it's time to take it easy and let us all give back. Take care sweetie and be a good girl LOL.
Hi Val - you were an inspiration to me when I joined the forum three years ago so you are in my thoughts and I do hope you soon feel a little stronger. xx
Hi Val. Sorry to hear things have been so tough....but glad to hear they are a little better...and that both you and hubby have the support of your daughter. You have been an inspiration to many hundreds of ladies on this forum........over so many years!!! Thank you so much for updating us ....we can now support you by holding you in our thoughts and prayers. Many hugs.....Pamx
Hi Val, read an update from Chris. Good to hear you are being well looked after. Hope you get some energy back. Take care.
too tired to type but thought my days were up. Spoke to Chris and hopefully you will hear updates somewhere. Just popping in to say I am still alive....just!! Val xx
Buffy, didn't realise who you were! Was nice to meet you the other weekend and makes me even happier to read your news Enjoy the lovely sunnt wekend xx
Great news Buffy! So pleased you are managing and enjoying work. Such stories give hope particularly to the newer ladies s thanks for sharing.
I'm actually early retired and it suits me. I think the important thing is to know that life dies go on after a secondary dx. At the time we feel scared and can see no future but there are lots of treatments out there and more of us living real lives with SBC.
Looks like it will be a good weekend weather wise so hope you'll all be able to enjoy it in some way xx
I noticed on the options you can send an e-mail. Would you not need my e-mail address for me to get a message. Anyway hows had your week gone? Got grand kids today so better not stay on here too long. Take care keep in touch. Linda
Not been on for a couple of days. Doing OKon E/E not had any side effect yet appetite and everything just the same. I wonder how long it takes before you start getting any as it is over a week now. Reading your reply your treatment does appear to be working and everything is stable. Can I ask how often do they scan when you are chemo tablet to see whether it is working or not. Looking after the grand kids today as it is half term 10 and 6. So better not stay up here too long as they will be wondering where I am. Take cared I will be on again over the weekend. Linda
I'm very sorry about your mum and for what she and your family are going through.
If you go several pages back in this thread there are some wonderful ladies posting who are surviving
with bone mets.
I'm sure one of the lovely ladies who is more experienced than me will be along to give you support as we all know how dark it feels to be diagnosed, but there is still light.
Another place you might want to look (as someone mentioned earlier in this thread) is the Celebrate thread in the link below. You need to start at the bottom of the page and work your way backwards.
Hi there, My mum is just going through the diagnosis process. We didn't even know she had breast cancer, she had the biopsies yesterday and we have to wait another week at least for confirmation before they can discuss treatment. She has it in numerous places in her spine, shoulder, ribs and pelvis. We only founf out after she fractured a vertebra so on top of everything she needs a zimmer frame to get to the toilet, she's only 57. We're all feeling just like you, my mum is petrified, me and dad too. I'm supposed to get married in June and desperatley want her to see me have babies. I've read a couple of stories on here that seem to be a little bit positive, hope they're helping you too. xxxxx
I hope you don't mind me posting, it's about my mum not me. I know there's a family support page but I was hoping for some replies from people who've got BC and bone mets. My mum is just going through the diagnosis process, she had a breast biop yesterday so we have to wait a week for a firm diagnosis. We found out about all this as she's fractured her L4 vertebra on NYE. We thought it was just that, now we know she has bone mets in 2 ribs, multiple places in the spine, her shoulder and pelvis and they're pretty certain the primary is in her left breast. I'm scared to look up anything on the internet and was hoping for some positive stories on here. I'm getting married in June and I'm so scared she's not going to be there or see me have children. She's 57 and until NYE i would have said healthy for her age, this has turned our world upside down. The doctors wont speculate on how aggressive it is or a prognosis and as hard as I try to stay positive I'm scared. Any positive stories from someone who's gone through similar would be so so welcome. I just want to know there is hope. Thanks in advance xx
Congratulations on you wedding Julie and Im glad you had a lovely honeymoon feeling relaxed. You'll so right its like being on a enoromous roller a coaster than you can't get off. I was on capectibine for 15 months its very doable and there a fanastic thread on the treatment board on cap with lots of info on side effects and how to deal with them.
I'd like to ask you ladies a question please. I have spine mets T5/6 and L1 I have some localised pain in the lumber region but the T5/6 is cause me a lot of pain. I've had a one off blastin October and it was heaven for two weeks. I'm getting a lot of nerve pain and it feels almost numb in the area. My pain killers are helping a little but they don't seem to be as effective as there were. Have you got any thoughts/ideas as to what is going on. I also have lungs mets and my treatment is faslodex and denosumab, I'm having a CT scan tomorrow and see 0ncologist on the 6th.
Thanks in advance.
Thank you Lucinda, we had a lovely wedding and the holiday was relaxing and not thinking about all of this!!! I know this is a rollercoaster of emotions and I'm usually in control of everything and this I can't be!!! At the moment I do feel quite well even though I have the pain in my ribs, and it's that what i find hard to deal with as well!!! I'm not on biphosphonates/denosumab at the moment but the oncologist did say about prescribing this, so hopefully I will have this when I go for my chemo. Thank you for your support, it does really help to read everyones stories and to know that you have been and are going through the same emotions and treatments. I feel more positive since writing this.
Hi Madge congratulations on getting married and hope you managed to forget all this crap a bit whilst on holiday. I was dx in May 2009 with bc and bone mets at the same time- thought I had a bad back. I had rads for the pain in mine spine just after dx, and have had several zappings in other areas since, and it really helped with the pain. I was on letrezole until I had progression, changed to e/e which did not work and then started capecitabine. I am just starting cycle 10 and I have had good results. The latest scan showed that there was no more progression and disease was stable, plus my bone mets were improving. I also have denosumab injection every month and I think this has really helped with the bone mets. You don't mention you are on any bisphosphonates, they also help with the bone pain. I am pleased you went for a second opinion, it really puts your mind at rest. I actually have my treatment at the Royal Marsden, I went for a second opinion and decided to have my treatment there.
I am sure you will have lots of questions so please ask and someone will be able to help if they can. We all have one of those days, I have had plenty in the last 4+ years and have always been glad of the support on here.
I've not been on here for a couple of weeks, got married end of january and had a weeks holiday, but today feeling really emotional and tearful all day!!! Was diagnosed with primary end of november, then told had bone secondaries in december. I have been on letrozole for 9 weeks and saw oncologist last week and because of my symptoms of pain in ribs, swelling and pain under arm, tumour feels bigger he has advised radiotherapy (planning tomorrow) and capecitabine. I also went for a 2nd opinion at the marsden yesterday and they also said the same, which I was relieved and reassured that what my oncologist said was the right treatment, but alittle part of me is disappointed!!!! I know I'm being silly but I can't help myself!!! Trying to be brave and always put on a front for everyone but deep down this is tearing me apart!!! I do have good support from family and friends. Think I'm just having one of those days!!! X
Don't worry about it, it's a bit of a glitch (it seems) with this newest style of forum. Most days it takes you to the last post made, other times to the first one. Grrrrrr. Sometimes I think I'm losing my mind when I read something completely different to how a thread has been going!
However, it gave you a good opportunity to vent a bit so it has at least served a purpose No harm in that.
Regarding how they picked up my liver mets, it was down to a CT scan that I insisted I had as I'd been getting a bit of pain in my right leg where one of my bone mets is (well, the hip to be more exact) I was a bit worried and wanted it checked out although an Xray and MRI didn't show any trapped nerves etc. I think my Onc was more shocked than I was when the liver mets showed up, in fact I know he was. He had me down as a 'bone mets only, everything stable' type of patient which, when you look at my pathology, I can see why. BTW I also had myself down as that as well. I think the fact my recpeptor status had changed since the last biopsy (of a local recurrence in 2008) is why it spread as the hormone treatment obviously wasn't doing its job, not surprisingly. He was also surprised when my receptor status was now different. It was only from this forum that I learnt that up to 30% of secondary BC can change (although he quoted about 18%) and I had a biopsy done once I knew I had a soft tissue met that could be biopsied, as I think its quite difficult and painful to get a bone biopsy done. Since I started Capecitabine, and the new bone treatment Denosumab, I haven't had a repeat of that leg pain so it was probably all down to bone progression, which had happened since the previous CT scan.
Hope you are getting on OK with the e/e, early days and it may take a while for your body to get used to it all, mine certainly did with the Capecitabine.
Where will I find your PM with your location? It would be nice to meet people in the same boat at myself. I still work 4 days 31 hours although how I feel at the moment can't see me working for that much longer.
Take care keep in touch. Linda
From finishing my treatment in April 2010 I have had 3 monthly checkups with oncologist. With not getting regular checkups how did they pick up it had travelled to your liver. I hear what your saying about travel insurance. Until this has happened I was having 2 holidays taking out insurance with Mia which was only about £70 to cover my bone mets for a fortnight. With this happening I can't see us getting anywhere. Also upon reading the side effects I have got to protect myself with high level of sun tan which I have never had to do in the past. I have always looked to getting some sun on my legs so I don't have to wear false tan.I just feel I don't have time on my side to try different treatments and feeling rubbish at 61 years of age if I don't feel well all the time what is the point it really upsets hubby when I say those sort of things. Unless you are in that position yourself you do now know how a person feels. I know Belinda on here was on it for 4 years and she found it a very do able chemo. I wonder why I have been put on the e/e combination and not on Capecitabine. I must stop feeling sorry for myself and pull myself together at least there are treatments not everyone is quite as fortunate. Must reply to the other ladies on here. Bye for now and thank you very much for replyining. Linda
Sorry to hear you are anxious about starting the e/e combo - its dreadful going back into the unknown, I should know as I had the same thing last year starting on Capecitabine after 5 years of Arimidex. I had had no regular hospital appointments, no blood tests, none of the inconvenience but suddenly back with a bang. It has taken quite a while to adjust but I guess its what we have to put up with. I did settle down with Capecitabine after a few cycles and bear it fairly well but I had a lot of problems with my heart condition and this defitely put me off any travel last year. I really couldnt risk it the way I felt so hated the fact we couldnt go away as we had been doing for the past 5 years. Since being dx with bone mets it really hasn't stopped me travelling, both long haul and short, but I think now that getting travel insurance would be my biggest stumbling block, or at least the most espensive stumbling block. I think premiums and criteria have been tightened which is a real blow if you're feeling well enough to travel. However we are hoping to get away to Europe this year and make the most of all the lovely places on our doorstep. However, when I was on IV chemo in 2008 (and if I go back onto) I really wouldnt feel comfortable making travel plans to go abroad due to low immunity etc. Luckily Capecitabine certainly doesnt knock my wbc too much so my general immunity is fine, just being a bit careful, and I don't have to watch what I eat in terms of risk of infection, which I had to do on IV chemo. I hope that you find the e/e combo works well for you and you don't find the side effects too bad. My oncologist doesn't use tumour markers which is a bit frustrating as they can be an indication of further activity so I don't have that early warning but also don't have the anxiety I suppose.
I see you are getting some support on the e/e thread which must help but just to say I know exactly how you feel about what happens next etc. As to asking about anyone near you, try looking on the Meet Ups section in the secondaries bit or putting a post on there as there may be a regular group near you.
My oncolgist uses tumour markers as well as how you feel in yourself. Every time I get blood taken when the results come through I always ask what my tumour marker are. For 4 years they were always 15 then last year they started to rise 18 in April 25 in July 33 in October then 41. It was me who asked to see the onolgist on the 23 December at short notice when I found out when I was getting my injection on the 20 December at the chemo they informed me it was 41 and not to worry. I was not happy so I rang the ongolgist secretary on the Monday if I could posssibly see the oncolgist. From then I had CT scan and bone scan which showed up slight progression in left hip but with tumour markers raising they decided to change treatment. I have asked oncolgist since then if I had not brought this to their attention how high would they have let it go before doing something none commital saying they were keeping an eye. I will see how I get on tomorrow at work whether I will stick with working even though I do enjoy it. I am due for retirement next January anyway 62.5 can't believe it I live in the North East just wondering if any of you ladies live here?
Just thought let you know I have now started the E/E on Thursday night. Liz when you started this combo how soon afterwards did the side effects kick in. Only did side effect I have had so far is a strange taste in my mouth not the same same as the metal taste that I had when I had FEC?Taxertere. Still up to now it has not put me off my food. Hopefully it will stay with like that. I know when I went through chemo last time my appetite was good always wanted dinners and stodge. Belinda you know when you were on chemo last year then came off it. How do oncology decide when it is time to come off one treatment and then move onto the next. I know when I picked up my tablets they said I would stay on it as long as it keeps working which seems a long time to be feeling low and susceptical to picking up infections all that time. Can I ask you with you now being in your eleveth year were you able to go abroad the times you were on chemo. I feel much at this this moment in time I had a good 4 years and now I back to 2009 feeling rubbish with no future. Sorry to moan on.
Liz have they decided what treatment you are now going to be going on?