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Bone mets - please join in

scottishlass
Member

Re: Bone mets - please join in

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

jojo22
Member

Re: Bone mets - please join in

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

dawnhc
Member

Re: Bone mets - please join in

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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Re: Bone mets - please join in

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
quality_street
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Re: Bone mets - please join in

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

Itiswell
Member

Re: Bone mets - please join in

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.

lizcat
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Re: Bone mets - please join in

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

Lemongrove
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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.

dawnhc
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Re: Bone mets - please join in

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 :). 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

lizcat
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Re: Bone mets - please join in

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.

LYNDYLOO
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Re: Bone mets - please join in

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.

lizcat
Member

Re: Bone mets - please join in

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

lucinda
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Re: Bone mets - please join in

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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Re: Bone mets - please join in

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
Katie2002
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Re: Bone mets - please join in

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

Lemongrove
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Re: Bone mets - please join in

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.

lizcat
Member

Re: Bone mets - please join in

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

na7asha
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Re: Bone mets - please join in

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
Katie2002
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Re: Bone mets - please join in

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

Itiswell
Member

Re: Bone mets - please join in

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 this:(1) 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

lucinda
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Re: Bone mets - please join in

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
Katie2002
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Re: Bone mets - please join in

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

Esha_Ness
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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.

nicky08
Community Champion

Re: Bone mets - please join in

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

Tournesol
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Great news Claire - have a lovely time in Cornwall!

Hi and best wishes to everyone - I don't post much but read regularly.

Tournesol x
Lemongrove
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Claire that is so wonderful, which has also encouraged me. Have a great time in beautiful Cornwall.

lizcat
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Re: Bone mets - please join in

Wilson52 - although I can't say whether you should be worried or not, what I can tell you is that nerve endings radiate out from your vertebrae round to your front and this can cause a lot of pain both in the back and front. I have bone mets in spine and this is what has happened to me - my immediate panic was it had spread to liver but recent scans show it hasn't and it is 'just' the pressure on the nerves and muscles.

Hope this is of some help.

Liz

na7asha
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Re: Bone mets - please join in

Yay for Claire, such good news 🙂 🙂

Wilson - There are probably 101 things that could cause the pain, You need to let the doctors do their thing. I really shouldn't worry until you know what you're dealing with. Sorry, I can't help much more. Hope you get answers soon. Take care x
Wilson_52
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Hi
Hope you don't mind me posting here but couldn't start a new thread. Can't get used to this new set up.
Had mx 3 yrs ago and on tamoxifen. Had CT scan for upper abdo pain, Went for results today and have a few fractured vertebrae. Have had a sore back but was more worried about abdomen in case it was my liver. Gp said pain was all related to my spine. Now waiting on a bone scan. Don't know whether to be worried or not. Should I be?
Thanks

Ramsfan55
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Great news Claire. Celebrate on holiday!!
suzanne

scottishlass
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Delighted for you Claire, Have a great time in Cornwall. Oh how I would have loved to visit Cornwall this year but had to head home early. Boo hoo. Will raise a glass of wine to you tomorrow. Cheers in advance. Val X

Katie2002
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Fantastic news Claire - over the moon for you. Enjpy Cornwall

Katie xxx

Thumbie
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Claire, fantastic!

lizcat
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Claire - that is such fantastic news and you will really enjoy the trip now!! Here's to the zoly and Arimidex continuing to do their job.

Liz x

myfanwy18
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Hello everyone,
Just wanted to share my good news. After my BC had spread to my ovary I had it removed and was told it had spread to my liver also. I had six lots of tax and was told by my ONC today lymph nodes in abdomen so small now as not to be a concern and they think it was never in the liver it was just a cyst. I asked about my bone mets and he just said, yes, your bones are still abnormal and did I still want to continue with the zoly treatment, having said at the half way scan they were healing up. It is the best news I could wish for in the circumstances. I'm now on Arimidex and said I still want zoly and will have another scan in three months time. I shall be able to really enjoy my trip to Cornwall this weekend now, yipee!
Claire

lizcat
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That was a bit of a day, Val. Still, as long as you are going in the right direction, that's the most important thing. Went on our bikes today on the prom in a dry moment when the sun was actually out!

Had my flu jab last night and so far (hope am not speaking too soon!) been fine. Had a couple of paracetamol at bedtime just in case but they help my back anyway.

Liz x

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Hey Val
I'm knackered just reading your post! Crikey, you do have a lot going on, but hopefully your sorted for now. Thanks for the flu jab reminder, I must sort that out.
Big hugs
Zoe xx
scottishlass
Member

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Hello Ladies, I spent most of the day at hospital yesterday. I got a call in the morning asking me to come in early (got there around 11 am) before my 3pm appointment because my bloods (HB) were only 8.9 and they wanted to cros match and get me 2 units of blood.
I got my Bone strengthener first which was good while we were waiting for the blood to arrive (usually takes 2 hours after cross matching). First unit went to plan but the second unit caused a reaction and my temperature soared so they had to monitor me closely and slow the transfusion down form a 2 hour infusion to a FOUR hout one! The unit closes around 6 30pm so they had to wheelchaor me over to the BC ward to complete the transfusion and I didn't get away ubtil 8pm! Luckily I do not live far from the hospital but boy was I knackered. I have also been given more steroids and after Friday when my current ones finish I have to take the new ones on alternate days. I also got my next new lot of Capecitabine and started that this morning. What a lot is going on!!
I went out for a little while this afternoon and had a little walk but I thought I would have a bit more energy but I got tired quite quickly. I see my Gp on Friday for a chat and to ask aout a FLU jab ( have you ladies booked your appointment for one?) and nexst week it is my review appointment with my Orthopaedic Consultant. But all seems to have gone well there and there is an improvement every day. Getting my independence back at last.
Hope you ae all doing okay with your treatments and side-effects. I have read all your posts and it seems as if we are all busy at the moment. Take care, gentle hugs, Val

Katie2002
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Afternoon everyone!
I'm back from the hospital. I've had my medicine and so far ok. Managed to finish one scarf and start another! So not completely a waste of time.
Na7asha - if you tell them at the hospital about being bunged up they'll give you super stuff. I think it's called 'Movecol' or something like that. Worked wonders for me.)n a different note - I recorded Paradise last night so have that to look forward to. Was it any good? Enjoy baking your brownies. I've got a cake to ice for my local Macmillan coffee morning on Friday. I hope to make it look like a coffee cup - not v original but doable. Anyway will be my little project for tomorrow and a break from the knitting!!!! Enjoy your coffee morning. It'll be nice for you to see everyone at work. Loving the evil laugh by the way!!!!!
I enjoyed livechat last night - it was good to 'talk'. I need to practise typing quicker though. I am still a 2 fingers typist!!!
Well think I will motivate myself to do something away from my chair. I have the delights of sorting out the washing and making tea. Think I'll also go to Al's school's PTA AGM - I love knowing what's going on. No doubt my name will be put down for face painting at the halloween disco.
Don't know what I am going to do tomorrow with no hospital appointments - think you are right Lucinda I will be having withdrawal symptoms!!!
Anyway hope there are some of you have managed to experience no rain. It hasn't stopped here.
Katie xxx

lizcat
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Afternoon!

Just watched the last Parade's End and really not sure what to make of it at all.....nice period drama but something not quite there but then does it have to be??? I have the book on my kindle and was going to read it before episode 2 but of course didn't so may have a look at some point now the nights are drawing in. Was going to watch 'Paradise' but then heard it was done by those who did Larkrise and although I love period dramas, that never did it for me.

Got copies of my last bone, CT and MRI scans today. I requested them at clinic and the registrar has duly obliged with a covering letter saying how nice it was to see me again and she will look forward to seeing me again in 3months - all very friendly and she is a nice lady. Lesions in cervical discs (probably wear and tear as I had problems there years and years ago), then T8 and T9 all affected, along with T12, L1, L5, sacrum at S1 and iliatic something (front of hip bone at top!). Defined lesions on liver and kidney cysts but all as 18 months ago there. Doesn't feel like I have all those nasties in my body but it's good to know that you can still have all these dodgy bits and feel ok and go on hols and not have oncs unduly worried!!! The bone scan report did start 'Unfortunately, there have been several areas of progression.....' but comparatively speaking, it's not that much in the scheme and timescale for me. Hope this gives hope to some of you newer ladies.

Managed to go out on electric bike today on the prom in the sunshine!!! Picked right time of day as it's raining again now. Am hoping weather will be kind to us on Fri as Mum is doing a coffee morning for Macmillan and has baked loads of yummy stuff and has a lot of older ladies who try to come as they know how much my family have been affected as well as their own and others.

Love to all boney ladies xx

na7asha
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Afternoon my lovely boney friends. Happy to report that am on day 2 of first cycle of FEC and apart from intermittent constipation pains (got me into a bit of a tizz last night if I'm honest), all fine. Nothing appears to be happening. Soooooo, guess I need to watch this space and not congratulate myself too early. But still, happy thus far 🙂

Liz and Katie - I was late to chat last night because I was watching Paradise. Not sure I'm hooked yet, but like you I'll watch any period drama. Havent caught up with Parades End yet...may get around to that later. Off to make brownies for a coffee morning at work. Although I feel like I'll stick out like a sore thumb considering the occassion. Something I feel I need to do all the same.

Val - hope you got on OK yesterday?
Katie - you'll be getting your drugs now, hope the day passes quickly for you and you have an easy ride with side effects, Remember, the little fecker bc will be getting a smack round the chops and feeling far worse off than you. Mwah ha ha ha (evil laugh)

Hope everybodys day is pain free and jolly. Hugs xxx
lucinda
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Have not been on for a few days so trying to catch up on all the posts.
Val hope your bloods are good and pleased you are getting aorund better,especially the driving bit.

Dawn so pleased you have had the darling babies with you and they are coming on so well,my first grandchild due just after christmas and can't wait.Hope you are enjoying your new toy.I was at Sutton today for my 3 monthly check so we may have passed in the corridors.Seems everything stable at the moment (other than sciatica down both legs) so back for scans and clinic just before Christmas.

katie no more rads .....hooray!!!!!!! .You will probably get withdrawal syptoms

Liz so pleased you had such a lovely time, venice was on my wish list but have given up on flying at the moment,planning a short trip to the New Forest next week-luxury spa hotel of course!

natasha good luck with rads and remember duvet days are a compulsary part of the treatment

rocketqueen I have to agree with everything lizcat has to say. I have had exstensive bone mets since May 2009 and there are many different reatments.Hope you get the answers you want from your mum's onc.

Big hugs to all xxxxxxxxxxxxx

lizcat
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Re: Bone mets - please join in

Rocketqueen - am sorry about your mum's secondary diagnosis. I hope you get plenty of info when you speak to the consultant on Monday - note down any questions you think of beforehand, no matter how 'daft' sounding and do remember that no-one knows how long anyone has with this disease. Just to say, I have been on zometa for 4 yrs now and whilst it doesn't get rid of the disease, apart from a couple of blips here and there, I am relatively ok. In fact I've just come back from a long weekend in Venice with a friend after some recent spinal progression. Had a ball and can't wait to plan my next jaunt!! I'm not saying this will always be the case but I grab chances while I can. When I was diagnosed with primary and secondaries to bones at same time in July 07, I had a 20% chance of making it this far. A secondary diagnosis takes some adjusting to but you do learn to live with it. I don't have a Macmillan or breast nurse assigned to me by the way and use people on here to bounce ideas off.

I hope you can all feel a bit calmer in due course and that your mum tolerates her treatment better this time round - first lot is always a bit of an 'into the unknown'. Any queries, just ask on here - there will be someone to help I'm sure as plenty have been around for a lot longer than me!

Liz

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Re: Bone mets - please join in

Hi I'm new here. Firstly this is a great thread with lots of inspirational stories. My mum was diagnosed with secondary breast cancer With bone mets only in july this year after breast cancer in 2006 and a lumpectomy and radiotherapy. I have yet to speak to her consultant on Monday about the stage of her disease and prognosis but I would like some help and hope! The mets are in her entire spine, 2 ribs, scull and a spot on shoulder. She had treatment 3 weeks ago of herceptin, which she is still ill from, and zometa. She had more zometa today. Her Macmillan nurse expressed the seriousness of the disease by telling her she has months not years left to live. I know that no one can me tell me how long she has left but does anyone have experience of this? Thank you
lizcat
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Re: Bone mets - please join in

Katie - no smell in Venice that we noticed and we both have a good sense of smell cos we're blind as bats! We both got bitten by mosquitoes, though not badly. I have about 6 all down one side and thought I heard a buzzing in the night so reckon that was the offending insect! I am very tasty for the mozzies....although sadly not the Italian men, bottom not pinched or even a suggestion of a pinch. Must be too old and unglam for them! My mate has never been bitten by mozzies before but ended up with about 8. She had a few Italians smile at her but again no bum nipping! I'll email you a few pics. Only got as far as watching this week's Downton this afternoon so Parade's End will be another day. Going to record Paradise tonight as it's on at similar time as chat. Celebrate finishing those rads!! xx

Katie2002
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Re: Bone mets - please join in

Hello everyone,

Thought I'd post before I go to school and pick up Alice. No doubt I'll get the obligatory ...'I forget' ...when I ask her what she's done today! I'm going to get her to help me make a cake this afternoon for the McMillan coffee morning this Friday. I can't cook - I am hopeless - but I love to bake. My idea is to make a chocolate cake that looks like a coffee cup. Fingers crossed it turns out that way.
I don't think it has stopped raining here for one minute today - it's rubbish.
Had last rad today - woohoo. It seems like I have been doing that trek to Christies for months. I am such a drama queen. I don't know how people can commute on the motorway every day. My hubby does and I never realised how bad it was. Anyway I'm glad I work locally (when I do work). The team were lovely. I obviously sub consciously wanted to be on their side of things as bought a pair of trousers from Asda which were the same colour as their uniform. They did offer to get me a tunic top so I had a matching set.
Liz _ I am so pleased you had a good break away. Strange question but did you find Venice smelly? I remember the smell hitting me when I went many years ago and the fact I got my bottom pinched!!!! Beautiful place tho! Any nice non-pinching Italian men? Oh did you watch the final Parade's End? What did you think? I want to watch that new programme 'Paradise' on BBC tonight. Just up my street - a period drama.
Well I've packed my book, my ipad, sweeties and have my knitting ready to go tomorrow. Been told I'll be in hospital for 6 hours after first herceptin. I'll be climbing the walls.
I suppose I better get ready to go to school - umbrella at the ready.
Katie x

dawnhc
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Re: Bone mets - please join in

I love the wittering too 🙂 it can't all be about our rotten bones can it. I'm off in a few minutes for an onc clinic appointment to get the results of my mri & ct scans - although I already have the mri ones. Not sure how I feel about the CT scan. I haven't been unduly worried but there is always that niggle of the 'what ifs' isn't there. I have always said I don't want regular scans and they have respected that. I think it is 2 years since the last one.

I have had such a lovely few days. My daughter and the grandchildren have been with me. Her OH had an all night cycle race and so she wasn't on her own that was the bargain that he brought her here. I have had my fill of baby cuddles and feeding/changing them and it has been wonderful. Although they are now about 11 wks they are still very tiny - perfect little miniatures. I hope it helped daughter to have a good rest as well.

I have just indulged in a fab new mobility scooter. I might as well spend my DLA money on something useful. It was I have to admit expensive! but exactly what I wanted. I don't need to use one all the time but have been so frustrated when I want to go to huge shopping malls or where the shops are well spread out and having to limit myself to one major store because I can't walk that far without a lot of pain and exhausting myself. Can't wait now to take it on its first expedition.

Na7asha like you I love gadgets! and am in the fortunate position of having my own company so can treat myself to things that can be 'useful' for my work :). Am thoroughly enjoying my latest toy - an i-pad.

Right time I was off to keep that hospital appointment.

Dawn
xx

lizcat
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Re: Bone mets - please join in

Natasha - oh you don't have to drag yourself out of bed.....or if you do, make it to the sofa. You're right, my friend is mad and we had such fun!! She's had her own really bad time while I've had bc and we always said we would go away and finally made it. I'm supposed to be the steadying influence in the friendship but made her pose for lots of the pics!!! Love her to bits, especially at bonkers moments. And when she tells everyone I'm about 40-42 when in fact I'll be 48 in November . Chat tonight, I hope xx

na7asha
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Re: Bone mets - please join in

Hello ladies. Sorry I've not posted for a while, I can't from my mobile...but I do read what you've all been up to.

Katie, yay to the end of rads and onto the next chapter. Am on FEC. 1 cycle of 6 down, started yesterday and so far am feeling good. OH commented that I'm full of beans. Fingers crossed I escape any hideous se's. LOVE your rambles and think your top tip was fab.

I've been thinking I need something inbetween a laptop and phone so I can surf, post and read... so if I'll look into that kindle I think. Love shopping for gadgets but I used to get all my kit from work. Had to give the ipad back. Not all bad, I still get a mobile and laptop. Hmmm, just mentioned this to OH and he's pulled a face. booooooooo. He doesn't see why I can't use the laptop. boooooo again. Will research anyway and see where we end up.

Val, hope you get on OK today and the time flies with your book. Have you been watching the latest Gordon Ramsey series, think I may want the book. http://www.channel4.com/programmes/gordon-ramsays-ultimate-cookery-course

Also really enjoyed Nigella last night, I love Italian food so I may need that book too. Haven't got anywhere near as many as you though.

Liz, hope your OH is well enough for you to travel. Glad you had a good time in Venice, your friend looks like a lunatic - great fun. Hope you do well this week lovely.

Anyway ladies, I really should drag myself out of bed... I know, shocking isn't it 🙂

Love to all xxx