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Bone mets - please join in

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Re: Bone mets - please join in

Hi Val, your news does sound great. You have done so well after all it is just 6 weeks since the op as you say. How fantastic that he has said it will last your lifetime! Here's hoping you will feel like a new person once you are really ready to throw away the props Smiley Happy. What has your weather been like today for your 'day out'. Down here it is quite wet now.

I am envying some of you getting going on your knitting. I used to knit & crochet a lot but now if I try to do anything like that I suffer badly with my hands and fingers going into spasm. It's a shame 'cos I would have liked to have been knitting for the twins. Never mind I have really enjoyed myself buying up lots of goodies for them even though my daughter tells me off!

My latest buy has been a new mobility scooter so I can terrorise the neighbourhood. Do any of you use one of these? I don't need to use it all the time but it is so frustrating if I want to go to shopping malls or larger towns because I just can't manage that amount on my feet. It means that if OH & I want to go out for the day that I can do it without worrying about 'overdoing' it. I found a really lovely one that is quite small and lightweight but the battery life on full charge is good - about 12miles and as I am quite lightweight I should get the best out of it.

Debs I will send you pm to see if that comes through ok for you. Bear with the site a bit longer - they are having a lot of problems with it and hopefully in time things will get better even if we have to wait for them to totally change it again!!!

Another change of subject: Herceptin & Muga scans. How frequently do you all have muga scans? Mine have been 6-monthly for some time now but at my last clinic appointment I told the onc I really hate having them and what chance of extending the interval to a year. She went and had a word with the consultant and he has agreed to let me have them annually. It's always worth asking if you feel like I do about them Smiley Happy.

Dawn
xx

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I would just like to share something with you all. I attended my first secondary breast cancer group meeting in Sheffield Today. It was fabulous to be with people who know what this journey is like. The people were so welcoming and I learned such a lot from their experiences. In the afternoon we had a visit from some specialist palliative care nurses who talked about pain management. All in all a very good 4 hours. I shall be going again!
If you haven't been to one of these groups yet, I would suggest you find out where your nearest one is held (via Breast Cancer Care) and go along. It really did me the power of good and I hope it will help you too.

love to all the boney ladies on this thread. You are a real inspiration.
Suzanne.

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Evening all

Good to hear your news Val. Tomorrow sounds like a fantastic way to spend the day, would rather that than the walking. Cheerio boys, I'll see you in the pub. Marvelous Smiley Happy

I've decided to learn to knit too. Well, I ordered a kit but haven't quite gotten around to trying anything yet. In truth I don't understand the instructions so I may have to freestyle it. Or be sensible and youtube lessons.

Katie, I'm with you on Waterloo Road, always try and catch it. It has lost some of it's edge now though,
Oh, and no... no lint roller required yet. I wake up every morning and check for hair on my pillow, can't believe I'll get off this lightly.

Claire, I've recently visited work and am going to go back soon. Was dreading it but am so glad I went. Was such a tonic being back with people that care about me, talking about ordinary non cancer stuff. Loved it.

Debs, sorry I can't help re messages but perhaps you could ask the site admins for help.

Hope you all sleep well. Lots of love xxx
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Val - that is really great news! You are an inspiration. I can't believe how well you are doing only after 6 weeks! Enjoy tomorrow. I hope the rain stays away for you. What are you knitting? I am busy making loopy scarves - I find it theraputic. My aim is to try to follow a pattern one of these days and make something a bit more difficult.
Take care xxx

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Val - that is really great news! You are an inspiration. I can't believe how well you are doing only after 6 weeks! Enjoy tomorrow. I hope the rain stays away for you. What are you knitting? I am busy making loopy scarves - I find it theraputic. My aim is to try to follow a pattern one of these days and make something a bit more difficult.
Take care xxx

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Hello my boney friends...
I saw the Orthopaedic surgeon today and he had 4 medical students in with him and had explained my complicated recent hip replacement after the fractured titanium pin incident.
Wel he is really pleased with my progress and says I am much further on than he would have expected since it is only 6 weeks after the operation! he had me walking across the room without crutches and standing on each leg while he held on to my forearms to see how my muscles etc were doing. I told him I had started driving and he said he is fine with that as long as I am comfortable doing it. He is now arranging physiotherapy for me to strengthen my leg and to help withg the healing process. He did say it may take up to a year to be fully recovered from the op and for everything to be working normally. But he did say that this op should last a life time. Fingers crossed that he is right.
So my spirits are boosted and am am glad that the review went with a hitch. You just never know do you. My husband asked if the fractured top of the femur was healing but the surgeon told him the bone has complaetely gone and has been replaced with the new hip.
So a few days of freedom now. next hosp visit in 2 weeks for Zometa, more chemo pills and my CT scan the same day.
Tomorrow I am taking the men ( four including my OH) dowwn to Peebles where they will be dropped off to go a long walk and I will potter round the hsops, visiting a marverllous butcher, do some charity shops and then a cooffee and cake until I reach the other end of the town where I will wait for them in the pub with either my knitting or my kindle to keep me amused until they arrive for their well dererved pint. Hope the weather is good for them and I don't want to be out in the rain all day.
Much husg to you all, val

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Evening everyone,
This is my second time of writing this post as lost the first. Goodness knows what I pressed. Probably not paying 100 per cent to typing as Waterloo Road is on ( which happens to be my guilty pleasure TV). Although it isn't the same since it moved to Scotland. Hey ho, anyway..
Liz - I do hope you are feeling better x
Na7asha - you are doing brilliantly. How is the hair situation? Needed to use the lint roller yet?
Esha - Talking of hair - mine was ruffled again yesterday albeit from a girl I used to work with but still... Think we need to design a sign to wear ...'Keep off the hair'
Claire - I know where you are coming from. It is a great feeling to be back in the world after months of splendid isolation. I am just getting to grips with going out and about too. I finished chemo in June. Enjoy the festival. Good luck with returning to work. Hopefully I will be back in December although part of me is quite liking pottering about during the day.
Itiswell - how are you coping with the drains? I found them sooo inconvenient but as soon as they were out I felt tonnes better. The district nurse took it out and was so gentle. I didn't feel a thing.
I haven't much else to tell you all. Baggins the cat behaved for the vet which was a nice surprise. Apart from that I had a weird dream last night which involved me being in a bomb blast. The thing was it woke me up and the pain in my mx scar was awful. I remember physically feeling like I was thrown. My scar has been sore all day since. Very strange. I must have really twsited myself or something. I do have vivid dreams.
Anyway back to my knitting. Hope you are all ok and sleep well xxx

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Hello,
Can anyone tell me plz why it show's that I have 16 messages but when I go into it theirs nothing there......so im not ignoring anyone just cant get into them....
Its not that easy a site to understand as I seem to take forever to try and find my follow ups

Debxx

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Hello everyone,
Val, sorry your feeling flat. Strangely although everything was positive after chemo I to felt flat, it is lifting a bit but I suppose it's knowing treatment is going to be an ongoing process. I did enjoy Cornwall though, did too much walking and felt a bit faint, red blood cells still trying to get it together after chemo. I went to the theatre on Thursday, something I haven't been able to do since April. It was lovely to feel part of the world again. Where I live there is a literary festival next week and I have booked several things, although with the talk on the 100 best racehorses I'm on my own! Lots more theatre trips are planned and going to Cheltenham races soon to so am beginning to get back to normal. Contemplating going back to work on the 5 November, perhaps only part time now, work can be good to get a routine back but I have enjoyed my freedom to, so a balance is required I think.
I hope everyone is ok.
Love Claire

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Hi Natasha,
Thanks for your reply. Just wish I had a magic wand at times, gets me so angry that the doctors seem so relaxed about it!! but I guess they know what their doing. She had been on Tamoxifen for 4 months before they decided it didnt work but now on Chemo and zometa.
Well I guess we'll ust have to work hard at keeping her mind off if, she has 7 granchidren to keep her busy and with xmas coming up she'll have plenty to look forward to.
Her doctor also said she'd be visiting the clinc for many years to come so im crossing my fingers for all of you!!!
Debxx

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Deb, I'm going through something very similar.

I was diagnosed in June and was put straight onto Tamoxifen and Bondronate (bone strengthener tablets). Onc said he'd prefer to see if the hormone treatment worked before we tried chemo as chemo is obviously harder on you. We watched and waited for 2 months and in that time it was obvious the Tamoxifen wasn't working because my lump grew and my tumour markers doubled.

Am much happier now I've begun chemo as it felt time to bring out the big guns. We'd made no impact on the tumour for 2 months and I was keen to move onto something else as quickly as possible. As my onc explained, we couldn't keep waiting to see what will happen. Time to get a blast of chemo to get things under control and then explore hormones again.

I don't feel like I've started chemo early, just started when I needed to. And, by the way, I'm don't feel unwell. My onc and breastcare nurse tell me they expect me to be around for a few years. Therefore I don't think there is a formula to it, chemo isn't left as a last resort, but used when required.

I've had 1 of my 6 cycles of FEC and have had no side effects. I'm hoping to be one of the lucky ones that doesn't suffer too much.

Ultimately we do what we need to, keep taking the drugs for as long as we can. I hope that's of some use to you. Take care xxx
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Hi,
thank you so much for your comments it does help us a lot for any advice and knowing that theirs others out there going through the same thing.
Mum went back to hospital today to be told that the Tamoxifen had not worked at all and that the cancer had spred yet again so she had to start chemo today and it will be every 3 weeks for 6 months, not sure if this is a good thing or a bad thing. She is on loads of tablets and has to take Zometa and chemo now for months Smiley Sad .
Does anyone know that if starting chemo so early into treatment is a good or bad thin?
Im sorry if im asking to many questions but mum wont let us go in with her at the hospital as she's so proud and does not want us to see her having treatment.
Thanks once again.
Deb xx

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Evening ladies

Nicky08 - wow, my easy ride was making me think this may just be an easier chemo. Onc did tell me most people tolerate it quite well. I don't feel any different, apart from stupid chemo arm that is. Got everything crossed that it continues.


Have spent hours trying to get info on metastatic breast cancer so I can keep posting & tweating news on secondaries so we're not forgotten in the sea of pink but I can't find anything to say. Won't bore you now, will post on another thread, Is frustrating though,


Katie, hope the cats didn't protest too much. Mine always sulk after a visit to the vets. Also hope you're still feeling brighter on your meds.

Itiswell and Lizcat - rest up and I hope you feel better soon.

Val - good to hear your GP is pleased with you. Think we all feel a bit flat sometimes, is such an effort to be cheery sometimes. Hope that by now you've done something lovely, like bought a new cook book Smiley Happy

Hope everyone is having a good week, is pain free and not being driven too mad by the pink crazies. Love to all xxx
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Itiswell - so glad you had the double mx. Sure you won't regret it. I had my second mx on the Thurs afternoon and was out next day.

I went down with norovirus last night and felt soooo awful last night. Stayed in bed and slept all day today and am off now for another 40 (or 50!) winks x

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Thanks everyone. Feel so loved now. Definitely feeling better and doing my exercises @ katie2002, Hate carrying the drainage bottles attached to me tho! Can't wait to get em off! Oh @ dawnhc, i got discharged the day after surgery, yesterday.
Lots of love. Itiswell

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Hi Katie, I know what you mean about books delivering a cancer story to us unsuspecting readers :-) I've done the same myself and not finished a book (that was given to me) as I didn't want to read about secondary BC - I've already got it, thank you! Maybe they should have warnings on the back, like DVD's, to tell everyone who doesn't want to read about whatever it is they are living with such as cancer, bereavement, unemployment, that way we could decide first LOL. Having said that I tend to enjoy, and stick to, crime thrillers - just hoping that nothing that happens in them will happen to me or mine.
Na7asha - well done for getting through your first FEC unscathed. I had this chemo back in 2008 and felt grotty for the first 5 days after each chemo but rapidly improved each time from then on, until the next one of course, Hopefully all of yours will follow the current pattern and you will get through it reasonably well. I certainly had more good days than bad but by the end was quite exhausted and needed a well earned break.
Itiswell - I hope your recovery is speedy and I'm sure, like the other ladies, you have made the right decision. I couldn't help with your initial question but now wish you the best with getting your strength back.
Hi Jo - sorry you have had to join us but we are a good resource for support and knowledge. It's good to hear you are doing well, physically, unfortunately it's the mental state that can take more time to deal with things. I found once I had my treatment plan and it was underway I was more able to cope. Since finishing chemo 4 years ago I have had ovary ablation and am now on Arimidex and Ibondronat. Due for my 6 month check up next week but assuming (hoping) there's no nasties as I haven't had (or needed) a scan to get worried about.
Hi to all bone mets ladies, new and old, wishing you all well.
Nicky x

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Hi there Itiswell,
Make sure you rest and don't forget to do your exercises!!!

Na7asha - good to hear you are doing well!
Sorry for shortness of post - hope everyone is well. No rain here in Bolton yet!!!! Hurrah!!! Am off now to wrestle my very grumpy cat into her cat box. Off to the vets for her annual check up.
Take care all xxx

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Itiswell for what it's worth I'm 100% sure you have made the right decision. Just rest now and give yourself time to recover.

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Hope you make a good recovery Itiswell. I think you will be happy with your decision Smiley Happy. How long are you staying in hospital - it amazes me how quickly some are sent home now. When I had my mastectomies I was in for 7 days the first time and 10 days the 2nd time! How things change eh.

Dawn
xx

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Good evening all, many thanks Broomsticklady, Dawnhc, Katie2002 for all your tots.. I do appreciate them. Decided to go for a double mastectomy. As a matter of fact I had it done yesterday so taking things easy today. Wld look into possibly doing a reconstruction in the future God willing. Wishing us all the best.

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Evening ladies

Quick update from me. So am on day 8 of FEC, still nothing major going on. I developed terrible pain and redness in my chemo arm. Quick call to my breast care nurse and I was sent off to get antibiotics. Is Phlebitis apparently, and can occur if you've had trauma to a vein. Think chemo qualifies Smiley Wink

Nothing much else going on. Am literally just trying to keep my head down and praying I don't develop any nasty se's. Looking good so far.

Am online all day, propped up in bed. Liking, sharing & retweeting all the the pinkness, adding messages about secondaries as we know we lurk in the background. I never intended to go public about my dx on facebook. Was happy that the people I want to know, do. But recently decided to flood everybodys newsfeed with as much secondary updates as I can find. Been quite cathartic actually.

Hope you all have pain free, restful sleeps. Lots of love xxx
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Hi Katie
I know what you mean about everything seeming to relate to the dreaded 'C; in some way. Then it dawned on me that really its no different to buying a new car. when you choose it, you think it is an unusual model/ colour, then the first time you take it out, all you see around you is the same model and colour as your 'unique' car!! So guess it's always been there, but you don't notice, until it relates to you personally!! - That's my piece of philosophy for the day.
Take care
Tulip
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Afternoon everyone - hope this finds you well,
Glad you had a lovely holiday Brigit. I, like many others, have forgotten what the sun looks like! I don't think the rain has let up all day here.
Congrats Tulip on your 30th wedding anniversary! That is pretty good going. Have a fab time in Malta.
Welcome Jo! I wish it was in better circumstances.
Good luck Itiswell - I am sorry I didn't feel able to offer any advice to you. I've only recently had my mx and am getting to grips with being lopsided. I am still in an emotional place about it. I do so hope though that you are ok and have had some guidance. All the very best with it all. I think you are incredibly brave.
Val - you sound like you have been incredibly busy.You sound as bad as me where books are concerned. I am an addict. If I could have my own library I would. How is the book about Dickens coming on? I am 'pigged' off with my latest book. I like a good mystery but am cheesed off that one of the main characters got dx with bc and then the next chapter had secondaries and by the next was dead. I could blooming scream. It just seems to be mentioned in every book and every TV programme (This Morning yesterday and Downton). I am sick of hearing about it!!!! Sorry for my little rant. I suppose I just expected more from this author - it seemed lazy and convenient. I won't mention the name as it is a new book and don't want to put others off. Do I sound like a mad woman??? Like you I have feel flat. Since my herceptin and zometa last week I just felt poorly. Today is the first day I have felt a bit like my old self. I just thank goodness the dreadful headache has gone. Again sorry for moaning.
Anyway I better go and get ready before I have to go and pick Alice up from school. My peace will end !!!! Although I am in her good books today as remembered tins for harvest festival collection. She is hoping to get merit marks for them - goodness help the teacher if she forgets as Alice won't.
Katie xxx

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Hi girls, hopeyou are all coping reasonably well. Just back from a fortnight in menorca, lovely weather, lots of swimming and walking - trying to do what I can, whilst I can! My back is still very sore though, and they are not sure at the moment what is causing it. It feels more like sciatica, down into my bum, rather than in the spine itself. Seeing oncologist end of month, so will have another natter with him then. I will also be starting Denosumab early November, hope it suits me better than Zometa.

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Hi Scottishlass
I was delivered a bag of girlie DVD's from a friend last week, but have only got around to watching one so far. IT's nice to have a break from reality!!
Having only been diagnosed in August I'm still getting used to all of this, but have found living for the hear and now, planning regular activities and not letting it take over really helps.
I've been on Tamoxifen for a month now & have started with what I thought might be thrush, but am concenred it is a side effect of the medication. Anyone else had this problem to advise me please? have already had to come off the Ibandronic Acid because of severe indigestion & now have to wait for my appointment with teh Oncologist on 24th october to review it.

Really looking forward to a week in Malta in october to celebrate our 30th wedding anniversary. A bit of sun & relaxation, is just what we need.
Take care everyone & stay positive.
Tulip.
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Welcome Jo, Sorry you have had to join us but good to see you poating again.
Quality Street. I am glad your hip operation is all done and dusted now. I am a few weeks ahead of you. It is now 6 weeks since my op and I am going to see my orthopaedic surgeon n Thursday for my review appointment. I am doing really well after the op now. I am back to driving which I am so so happy about. I can gad about on my own again at last. I am still tired at times and think I can do more than I am capable of. I made the evening meal tonight, cottage pie followed by Eve's pudding but I had to enlist my husband's help because i took on more than i coud chew!!. Bit he didn't mind and mashed the potatos and podded the fresh peas for me and lifted things in and out of the oven. I thought I could do it all.....and I couldn't. But the joint effort was worth it and my daughter joined us for tea after her work. Sadly I was supposed t go to a meeting tonight for a Secondaries support group but I ended up flat on my back knackered instead! But, Quality Street if I can help in any way with questions that come along regarding your recovery after the op please feel free to ask.
Although my recovery from the op is going great ( I can walk without crutches inside but not outside yet) I am finding the restarting the Capecitabine a but of a struggle. I have my appointment for my Ct Scan on 14th October for chest and abdomin but I do not expect anything nasty as I think in my heart of hearts that my Lungs are fine. But pleased that the Consultant Oncologist is checking it out all the same.
I also feel a little flat still. It seems to come and go a bit. I saw my Gp on Friday and he is really pleased with my progress and aays I am doing well and looking well. I don't feel weepy or depressed I just feel flat. My head still wants to do things but it is all a bit of an effort. I did have a HUGE clear out of books last week. Took about 200 books to several charity shops ( well my OH took them for me) and all my fiction are in alphabetical order and all my OH's books are on shelves of their own. Also had a clear out of my numerous cookery books. If the charity shops get £2 for each book that should raise around £400 for various charites!
I was in a local charity shop today and picked up 5 DVDs to try out ( don't often buy them but only £1 each) plus 6 CD's for 50p each and all singers I enjoy. I plan to take the DVD's to my cancer ward as some kind person donated small dddvd players but the films were not to my taste so hoping there is somethong here for the people on the ward ( women's films really). Hope you are all okay. I am off to bed soon with my latest Denise Mina book called "The End of the wasp Season"....night night. Val

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Hi All, I have been a lurker since the summer, I did post once then, but now feel able to join in please. My name is Jo Im 45 had bc 7 years ago, mast, chemo radio and tamoxifen for 5 years, thought it was all behind me, pain in my sternum made me be referred back to my onc and was diagnosed with many small bone mets and a tumour behind sterum. Since 2bc I have had my overies out and am on letrozole and have started the new drug denosumb (I think thats how you spell it). I have had two injections so far and have had no sides effect that I aware of which seems a plus. Apart from the emotionally journey, physically I am well, with no pain now, few aches but nothing I need pain killers for.
I have asked to be referred for a second opinion at the Royal Marsden, not because I'm unhappy with my treatment, just want to make sure I am doing everything possible to remain stable.
Regards
Jo

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Itiswell sorry your post seemed to have got missed in the rush of other posts and I notice that you say your surgery is due very soon. I think you might find it helpful to phone the BCC helpline and talk this through with one of the nurses. If you want something different to what is planned you will certainly need to speak to your surgeon before the surgery day.

You need to ask yourself how you feel about a double mastectomy - would you want reconstructions if your surgeon was willing or would you be happy with prostheses. Remember you are quite young to have to cope with all this and you could have many more years living with bone mets (my bone mets were diagnosed 10 years ago). I think if you are large breasted you will be more comfortable with a double.

Dawn
xx

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Itiswell - I saw your original post and wasn't sure how to reply - I wanted to but in some ways didn't feel 'qualified' as I just had WLE and node removal. But my sister had to have double mx, and she was happier - exactly as Lizcat says - more balanced - that way. I've thought a lot about what might have been, had my genetic liabilty been identified earlier and I seriously think I'd have opted to have both breasts removed as a precautionary measure. I think if that was my thought when it may have been a possibilty, then if it exists in both I'd not be thinking twice. Don't know if this makes sense or helps, but it's meant in the kindest way.
On a lighter note - I LOVE RADIOTHERAPY! I'm now off morphine and needing hardly any pain relief!! How long this will last I don't know but it's so gratifying not being on those strong drugs!! THis was my 2nd lot of pain rads, the first zapped my strength quite substantially and left me pretty low tho in less pain but this second lot I sailed thru, so don't be put off if your first experience is mixed.
And on an even lighter note - I watched Johnny English Reborn on Sky the other night!! Excellent light don't have to think film - but I want one of his wheelchairs! Outriders, steering handles, Fast, V fast and F Fast settings, and joy - a Zzzz setting where it reclines!!
Gentler hugs to all on here - there's a lot going on with holidays scans grandchildren, and I pray to hear an all clear lung wise from Val - you've got to keep as you are - you're such an inspiration to everyone here.

Nina

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Hi Ladies, Thanks for all your positive replies and best wishes. Had the hip replacement 10 days ago and managing well on crutches. Scan this week to see if it has spread to other organs (Yikes!!) results nexr week, have been taken off extrematase and zometa for now. Onc, devising a new plan when results are through. Maybe oral chemo and back on zometa. Will keep you informed. You all made me feel so much more positive and I have a new grandchild on the way in January who I cant wait to spoil. Best wishes to you all, you are my inspiration.xx

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Many thanks lizcat, I think it does make alot of sense to get them both out at the same time especially for the reason you noted. My surgeon is happy to go through with any decision I make. I'll keep you updated on progress... Any further opinions from the lovely ladies on this forum will also be appreciated. God bless us all.
Itiswell.

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Itiswell - sorry just read your post. I had mx on one side after chemo following my original diagnosis which was primary and bone mets at same time. I didn't have reconstruction. That was 5 yrs ago and I found I was becoming increasingly unhappy at being unbalanced so late last year asked my wonderful surgeon if he would consider 2nd mx. He discussed with onc and they said I could have it as I was basically stable but of course told me it won't cure the cancer (obviously) but if it helped me psychologically that was fine by them. Plus it takes away the worry of it appearing in the other breast. I had the surgery in March and don't regret it for a single minte. That's my personal opinion anyway!! x

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Yes I agree with both Lizcat and Dawnhc. In March this year I realised I had been living in a fools paradise. I had been told the previous October that I was NED, but by Christmas I was having significant pain at the top of my spine. I then discovered that the docs had suspected cancer in my spine for quite a while, but had not told me. One doctor said cancer I was not NED and that cancer in the spine was obvious for quite a while, but the Prof in charge of my treatment say's it was only obvious in retrospect. I learned the hard way they do not give the whole picture, and so I now ask for a copy of the radiologists report every time I have a scan.

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I so agree with what you say Lizcat. When I have scans done I always ask the onc to give me a copy when I get the results. I find that if I don't they can be very selective in which bits they tell you! For instance last week I had a clinic appoint for results of MRI & CT scans. Onc tells me they show disease is stable! Great but I then ask her for a copy of it Smiley Happy. There is a lot more info there than just 'stable'. Remember you can also ask for copy of all your notes any time. There is a maximum charge they can make and you may have to do a bit of form filling through PALS but they will send out all your notes if you request them.
Debs sorry to hear about your mum. I'm one of those who has lived for many years with extensive bone mets - I was dx in 1990 with bc and in 2002 with bone mets. As Lucinda says there are other things they can try for your mum and I would certainly say ask about the new drug denosumab. The others are all bisphosphonates so not sure if she would react to those in the same way as zometa but denosumab is quite different.
Dawn
xx

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Lyndyloo - very glad you had a great holiday. So good for the soul!! Re the scan report, I get the written report not a copy of the image but it gives all the info. I just ask onc or registrar for a copy of what I want and they get one sent out. The GP surgery isn't exactly on the ball with things - letters etc come in from the hospital and they just file them. It was 2.5 yrs after diagnosis when one GP (never see the same one twice.....) said 'Oh, do we know you have mets?' My reply, 'You should do, as the hospital have been sending you details of my treatment for the last 2 and a half years'. Copies of the reports make me feel like I have some control in management of the disease and if I have any queries about any aspect of it, I just ask onc team.

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Morning everyone, Just a short message to say thank you for suggesting Mia Insurance. I got quoted only £55 which covered my bone mets as well. The only thing they requested me to do was to go to my doctor and get a letter on file to say I was fit enought travel which was OK by me. I have just came back from Benidorm yesterday which I throughly enjoyed. I have just celebrated forty years of marriage on the 23rd of this month.

Lizcat, I did't know you can request a copy of the bone scan report. I had my last bone scan in May could I still ask for a copy? I feel it would be a good thing to have as when I am sorting out things like holiday insurance they always ask how many places you have it. To be honest I am not sure.

Once again thank you all very much. Bye for now.

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Hi Deb,

Just to say I agree with everything Lucinda says - saved me typing a lot!! I've been on zometa for 4 yrs now and can tolerate it but remember it isn't designed to cure the cancer just to strengthen the bones and hopefully prevent fractures and bone weakness. Having said that, it is a great drug and the tablet forms and new injection form are great too. I've had bone mets since primary diagnosis in July 07 (aged 42) and although I've had bits of progression, my onc and I regard them as 'blips' and in spite of my last lot of spread, she said she expects me to be around for many years to come. There are lots ofntreatment options available, from chemo through rads through surgery. I had a one-off rads blast last year on one area in my spine and it worked instantly.

I hope this week's meeting goes well and feel free to ask any questions on here - there are lots of ladies with loads of experience.

Liz

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Hi Deb
I am sorry to hear your mum has been dx with breast cancer and secondaries.I was dx with exstensive bone mets in 2009 and still here to tell the tale, many ladies on this site have had bone mets for many years so yes your doctors are right in telling you there are many things they can do, and yes she will be going to clinic for years I am afraid.If your mum cannot tolerate zometa there is an oral form she can take daily (ibondronate) and they may try her on that and there is also a new drug which has just been approved(densunab) that is given as an injection.I know it is all really scary for you and your Mum but they will try to find a treatment plan for her,each of us react to treatments and drugs differently.Your mum is lucky to have a caring daughter to help her through this.
Feel free to ask for any help and someone on the site will try to help you.

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Hi all,
new to this so apologise in advance if I say anything out of place. Im writing on behalf of my mum, she was diagnosed with breast cancer at 47 in 2004 was fine up untill march this year. She's had 4 shots of zometa only to be told 2 weeks ago that it doesnt seem to be working!!! mets in her lower spine, right side ribs, pelvic area and small nail size on lung. She's really ill every time she has zometa and hate seeing her like this. Is there anything else that she should be trying?? Feel really bad as we dont seem to know whats going on from one month to another and all the doctor seems to be saying is that theirs a lot of things they can try and that she'll be going to clinic for years to come, is this true or are they just saying these things? mum is only 54 and were really not ready to give up on this. Any advice would be great. She is on zometa at the moment and tomoxifen think thats how you spell it. Doctor wants to see her again this wed to change and talk about treatment again.
Thanks
Deb x

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Thanks everyone - I am feeling better but just very tired and spaced out. Hope you are all well and having a lovely weekend xxx

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Katie, I think the severity of SE's varies quite a bit. I also started Herceptin and Zometa last Wednesday (19th September), along with Capecitabine oral chemo, and my only SE's so far are tiredness and acid reflux (and a runny nose). Hopefully you are over the worse now, and things will settle down.

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Katie - that's probably just first zometa reaction. I had it but not as badly as you and I'd been told to take paracetamol as you can get flu-like symptoms. It never happened again. Drinking plenty of water is also good for the absorption. Herceptin probably has had an effect too but I can't help with that as I'm not on it.

Hope the weekend is better for you xxx

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Katie, Am so sorry have only just caught up with this. Thought you were doing ok and am so sorry the drugs are making you feel rubbish. Remember it's a least a sign that something is happening. On the flip side, you could be feeling nothing and wondering is anything is happening at all or if it'll work. Just think about those nasty cells getting a smack round the chops. They now know you mean business and are quaking in their boots

Hang on in there lovely and I hope you start feeling brighter soon. xxx
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Thanks Lucinda - I don't know why but I just wasn't expecting to feel so rubbish. You've put my mind at rest though that it can happen.
Katie x

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Hi Everyone..
I hope you are all well? I posted on this site 6 months ago after I was initially diagnosed of BC with mets to the bone at 30. I have since had chemo and tamoxifen. I was told recently that as i had responded well to treatment I can have a masectomy on my left breast, however the other breast showed some cancer cells which can barely be seen.
My dilema is thisSmiley Sad1) SHOULD I HAVE A MASECTOMY ON BOTH BREAST RATHER THAN ONE AND PART ON THE OTHER AS THE SURGEON SUGGESTED? and (2) MOST IMPORTANTLY, WILL A DOUBLE MASECTOMY BENEFIT ME DESPITE SPREAD TO BONES?
I'll appreciate any helpful feedback asap as I am due the surgery in a few days. Many thanks to you all and God bless us all.
Itiswell

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katie I am only on zometa,but had a similar reaction after first infusion,It is usually worse after the first one and I don't really have any problems now one year down the line. Glad you are feeling a bit better.L xx

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Hi ladies,
has anybody had faslodex along with letrozole and if so how was its? I have been on letrozole since dx in dec along with zometa and it was all going well until my last pet scan sep11 Which showed slight progression so I am due to start faslodex when I get back to Dubai, at the mo feeling down. Any feed back would be great xx

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Afternoon everyone,

Esha - I know exactly what you mean about hair ruffling! I look like I have a number 2 at the moment and only this morning a good friend ruffled it as she was leaving after having a coffee!!!!!! I have to admit I thought in some weird way I was asking to be 'ruffled' as I keep touching it myself like I don't believe its coming back!!!! Anyone not having gone thorugh this and reading this must think I am barking!
I have to admit I felt shocking yesterday. Had my first herceptin and zometa on Wednesday. I was ok in the hospital and after the 6 hours went home. It hit me in the middle of the night. I was shivery then hot. My headache was horrendous and my whole body ached. I felt well and truly awful. I basically had a day in bed. I was really cheesed off I didn't finish my cake for the coffee morning today. Is this normal? I suppose I could be reacting to either drug.
Anyway at least today I am up and dressed. I went to the coffee morning with my mum and have managed to get to school to pick Alice up so at least I'm on the up. I know this is a stupid question but I'm due out with the girls tomorrow night - do you think it'll be ok to have a drink?
I hope everyone is ok and has a great weekend. Na7asha hope all is going well with you and the chemo.
Katie x

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Hi all
Keeping up with all of your messages.Thankyou.
2 little gripes
1.When you are growing your hair back post chemo people seem to think its OK to totally invade your privacy by touching or ruffing up your hair like you are a dog!
2. Please in all of these NICE gudelines please do not state that us Secondaries women have such a short time left. I dont want to see it spelt out in black and white.
On a positive note I am feeling well, all meds and chemo have got cancer under control at the moment, have no symptoms and have lots of energy. 2 years 9months since secondary diagnosis of extensive bone mets.

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I also haven't posted in a while as I've been away on holiday but have just read and caught up with everyone's news. What great news for you, Claire, have a great time this weekend, hope the sun shines for you.
Hi to all the other boney ladies, hoping that all your treatments are working for you and you are coping or recovering well. Sorry if this is a bit vague but there were so many posts since I last read them that I would forget someone if I tried to comment on all of them.
I hope anyone going to a coffee morning today has a lovely time and lots of money is raised - for all of us :-)
Nicky x