Bone mets - please join in

[herbgarden]

Hi Ladies,
Just posting to say I got MRI results today and all mets in my vertebrae are stable since commencing on capecitabine in Feb (also on zometa). I was very relieved and I can now look foward to a holiday we've booked mid nov.(cruise from venice to barcelona with a few days staying at beginning and end of the cruise. Long may the stability continue! Pamx

[lizcat]

Great news, Pam !!!! Enjoy your hols.

Liz x

[AmysMum]

Thank you for the warm welcome.
I picked up the tablets today. It took trips to 2 chemists as Asda was out of 2 of them and then the co-op was a bit low on one too, so I have some tablets and an IOU.
I am indeed on a Bosphosphonate (Bondronat), Calcichew (a calcium and vit D3 tablet) and 10mg Zomorph. I'll see how I do with the morphine. It looks like a low dose, so hopefully I won't be too drowsy. It does say not to drink alcohol, which is a bit of a shame.
It is good to hear that rads have worked for others, but I won't be too surprised if I get a bit more pain first,
Sorry I forgot to sign my earlier post - other forums I post on I have a sig, so I tend to forget.
Sue

[broomsticklady]

So sorry Amysmum you've had to join us - as others have said there's a heap of knowledge here. I've had rads on my spine and hip twice now - different places - and the pain relief has been fantastic - altho be warned it can get worse before it gets better - the cancer cells swell from what I gather, and if they don't have room to do so they get crabby - but then burst and it's utter relief.
I think a lot of people have similar experience with bone mets - they thought I had them in my spine at primary dx, but decided it was wear and tear, and then 18 months later I had pain, scans etc and lo and behold it's mets this time - it probably was first time looking back but hind sights a marvellous thing.
Please don't suffer pain in silence medic wise - or put up with side effects - I was conked out by the first type of morphine they prescribed. After seeing Palliative care man - scary thought but the nicest medic I see - he changed my morphine type and it was like being given a new life. My 2nd rads have now meant I've weaned myself off morphine, but I now know not to sit quietly and suffer but shout a bit and someone will do something.
Nina

[Katie2002]

Amysmum - I'm sorry too that you have had to join us. I am a relative newbie to all of this but I know that you will find everyone on this thread to be supportive and full of good advice. I'm sorry you are in pain but from what I have read from others the rads do work. I was dx not last Dec with bc. At the time I had all the scans and was told it looked like I had wear and tear on my spine. It was all inconclusive but I remember my BC nurse reading over the phone my report stating no bone mets found. It wasn't until after chemo and just before my mx they re- ct scanned me. It was found that the chemo had 'hardened' and changed those areas considered wear and tear hence the bone mets dx. I now am on herceptin every 3 weeks and zometa (a bone strengthening drug by infusion) every 6 weeks. It was all a bit of a shock to be honest. You just have to remember that your onc will be doing the very best for you and tailoring your treatment to you.
This thread and the women on it has given me lots of hope and strength. I sometimes go on Livechat at 8.30 on a Tuesday to speak to others with a secondary diagnosis. It's a good way of asking others advice. There is a nurse on too which is helpful.
Anyway take care x

[lucinda]

AmysMum sorry you have had to join us and you are in some pain.You should find after the session of rads the pain levels will improve,if not immediately a short time after.The chances are you have been given bisphosphonates,these help with bone pain as well as helping to keep bone mets in check and helping with pain.They do have a specific way of taking them.You take the after a 6 hour fast(so taken in the morning) with a large glass of tap water one hour before food and any other meds,and you must remain upright for onr hour after taking them.Sounds a bit scary but you soon get into a routine.I am sure they are doing the ct scan to back up the bone scan,it is difficult to tell bone mets from arthritis on a bone scan.
Come back and ask as many questions as you like,someone will try to answer you,and yes there is life with bone mets.Good luck with scan and rads.

L xx

[AmysMum]

Hi Ladies
Can I, tentatively, join you? I was treated for primary (stage 3 er+, her-) bc last autumn/winter with a mx, chemo and then rads. At the time, all the scans showed up as clear for the rest of my body.
Then, in August I moved the sofas (looking for a toy) and have had back ache since. When I had my annual review with the breast surgeon in September, he sent me for an x-ray and when that came back looking dodgy, I was sent for a bone scan too. I got the results of that last Friday and ne of my vertebra is mis-shapen. The onc showed me the scan from last year and the same bone was a little odd then, but it has definitely deteriorated in the meantime. Because of my bc dx, he assumes it is bone mets, although he isn't 100% sure.
Everything is moving quite quickly, now I am back on the cancer-conveyor belt. I had bloods taken to check my hormone levels, then a Zoladex injection on Friday. Today, I go to collect a prescription for something to try to strengthen my bones - I can't remember the name of it, but will be googling later - a calcium supplement and some morphine. Tomorrow I have an appt in the Radiotherapy dept as the onc is recommending I have 10 zaps to contain any problems. Then Friday week I have a CT scan.
I am not too sure what to make of all it all. In a way, I am almost more worried that it might not be bone mets, as then I have a crumbling bone and no obvious cause. But then I am also worried about the risk of bone mets spreading. I am hoping that the tablets help to build up my bones, as I am trying to adjust to a life where lifting/carrying anything weighing more that a couple of kilos hurts and should be avoided. I guess we need to pack away the Le Creuset casserole dish.
I have been lurking on herre for a few weeks, and many of your stories and the fact that there are so many long-term members does give me hope that life does go on.

[lizcat]

Herbgarden - will reply properly in morning so we can compare notes! Rads looking the likely option for me again but see onc next week.

Katie - liking the shopping bit!! Brave of you to go to Trafford centre.....will email you tomorrow. Going to watch last New Tricks now. All my autumn viewing programes are finishing, boo-hoo!! x

[herbgarden]

Hi ladies.
Lizcat I'll be very interested to know haw you get on at the orthopods. I have an appt with onc tomorrow to get spinal MRI results and of course am hoping all remains stable on capecitabine....especially as I have a holiday booked mid Nov....a cruise from Venice to Barcelona which im really looking foward to! ....I have a review appt re possible verteboplasty with the spinal orthopod...or at least a review.... at the end of nov. One vertebra is too far gone in that it is completely collapsed but the one above is vulnerable....up until now he has been reluctant because I have little or no pain. He also said he was worried about supporting one vertebra may put additional pressure on vertebra below and push it further into my spinal cord. It will be interesting to compare notes!
Katie I think zometa can cause the symptoms you describe. I however got similar symptoms when I was on arimidex prior to my secondary diagnosis......I wonder if you are also on hormone treatment?...it was particularly bad when I was taking the hormone together with a cholesterol lowering drug.
Best wishes Pamx

[herbgarden]

Hi ladies.
Lizcat I'll be very interested to know haw you get on at the orthopods. I have an appt with onc tomorrow to get spinal MRI results and of course am hoping all remains stable on capecitabine....especially as I have a holiday booked mid Nov....a cruise from Venice to Barcelona which im really looking foward to! ....I have a review appt re possible verteboplasty with the spinal orthopod...or at least a review.... at the end of nov. One vertebra is too far gone in that it is completely collapsed but the one above is vulnerable....up until now he has been reluctant because I have little or no pain. He also said he was worried about supporting one vertebra may put additional pressure on vertebra below and push it further into my spinal cord. It will be interesting to compare notes!
Katie I think zometa can cause the symptoms you describe. I however got similar symptoms when I was on arimidex prior to my secondary diagnosis......I wonder if you are also on hormone treatment?...it was particularly bad when I was taking the hormone together with a cholesterol lowering drug.
Best wishes Pamx

[Katie2002]

Hello everyone - I didn't get round to making the alien costume - I went Christmas shopping to the Trafford centre this morning and spent the afternoon cleaning. I could smell a disgusting smell - so have cleaned the bins, mopped floors etc. I can still smell it!!!! I have worked out it is the carved pumpkin in the window. It's disgusting!!!
Liz - I hope you got sorted at the appointment this afternoon? Where are your next hols planned? We've booked to go to Norway next August. I am soooo excited as I've always wanted to go! As for Downton - noooooo!!!!! I didn't realise that it is the last one next week.
Chrisp1e - I am glad to hear that the weird dreams are still happening - I'm jealous! I am disappointed mine have ceased for the time being. Maybe they will come back next week after my next shot of Zometa. As for the baking - yum!!!! I too have been baking whilst off with my 'touch of cancer'! I would love to be at the level of Great British Bakers. Problem is I'm eating all my goodies. Don't get me wrong I've always had a sweet tooth but recently it has got worse.
Anyway this maybe a niave question but recently I have been really stiff and sore when I get up from sitting or lying. Last week my knees were giving me jip but it's my hips this week. Is this typical???? Is it the zometa or the cancer spreading? I'm ok if I keep on my feet and once I do get up I can walk the stiffness off. It isn't painful which I am grateful for. Anyway I know it's only a very small thing compared to what a lot of you are going through but I would appreciate some advice? Thanks
Take care everyone xxx

[lizcat]

Hi ladies,

I have been reading even if not posting. Been gallivanting a bit as I went to the BCC SEcondary Overview days in both London and Liverpool where it was great to meet ladies from here, old and new! I felt they were much needed days where we could meet others in similar situations and just generally chat and eat.

I thought Strictly had the right result this week, both with the bottom 2 and Sid going out. Hope Colin goes next week as I can't take to him......Can't believe it's the last Downton next week either - that has gone so quickly. Will all the threads be tied up or will there be a cliff-hanger til Xmas (am hoping for a crimbo special). I've been busy playing with my new toy - a Kindle Fire. Came last week and for a non-tech person like me, it's amazing. I've used it for emails, fb, sites like this, loading photos, sudoku and i-player. All the books from my old kindle were automatically loaded on to this one on receipt.

My back has been playing me up quite a bit even with painkillers (paracetamol and codeine) and this afternoon I am off for a 3 month check-up with neurosurgeon. They were going to do vertebraplasty in Aug but it wasn't suitable so he thought rads might be better. Onc said if I could manage with pkillers, that would be good for now and it has been until recently. Sitting down deffo makes it worse. Have spoken to onc and decision is to keep my appt with neuro and assess report with onc next week. We will see......as long as it doesn't interfere with hols, anything is fine by me!!!

Hope those with tests and treatments this week get on ok.
Liz x

[chrisp1e]

Glad you're enjoying Strictly, Val and Katie. I love it too. I think they thought lisa Riley wouldn't manage to move too well as she's a bigger lady, but she's been fantastic. I'm glad Sid went out too. He wasn't that good. Listen to me, who has 2 left feet!

I'm getting into baking this week. Haven't baked for years but the Great British Bake Off got me really interested. I've been watching the master classess this week and want to try some of the things out. I've made an iced gingerbread, a favourite recipe from years ago and also some cupcakes. I'd love to be able to ice and decorate them well.
Good luck with the costume Katie. i did have a weird dream again - and I'm not on Herceptin. Don't know what I can blame it on. I dreamt that we went on holiday. We bought a washing machine and my dad plumbed it in - he used to be a plumber! Anyway, whatever he did, every time we put the machine on all the lights fused and my OH had to fix it.
Val - hope your bloods are OK. I get mine done on Tues for getting my Zometa on Friday.
Regards to all.
Christine xxx

[Katie2002]

Just wanted to say hello to all the boney ladies. I have been lurking of late and this week has flown.
Val good luck at the docs tomorrow. I am sorry things have been rubbish for you recently - thats probably a major understatement. I just want to say thank you to you for being here on this thread. Your replies to my early posts have really given me hope. I.m pretty rubbish at putting things down on paper - I wish I was more articulate, but I hope you get my gist. changing the subject did you enjoy strictly? I am loving Lisa Riley and was glad Sid left! Are you reading anything good? Did you finish book on Dickens? I've just started the new Nesbo 'The Bat' ...so far so good. Just finished the new Marian Keyes and was slightly disappointed that she squeezed in a reference to bc on one page when there was no need!!!!
Well chrisp1e - I have disappointedly not had any weird herceptin fuelled dreams this time. gutted!!
Nicky - well done, great news that made me smile.

well half term is over here so Alice is back to school tomorrow. I have to make her alien costume for the nativity...I know, v strange! But will keep me busy.
Anyway - downtown on and I still think Bates did it!!!! best wishes everyone -take care xxx

[scottishlass]

Hope everyine has had a restfu weekend and re-charged their batteries. I have been watching S/come/dancing and enjoying it again now. I have a GP appointment early tomorrow for blood test but have written a list of questions I want answered. I hope he has had a restful weekend too! Love to all bone mets ladies and any other lurkers or other Secondaries ladies from the other threads. Val

[golightly]

Agree with you all with this new site....just difficult to use and hard to keep up. Val, you must feel a bit responsible for us all but please think of number one and I hope you feel more energy soon, such a pain you've had more probs xxx hi to everyone. Nothing useful to say. Really flat this week, but grateful that orthopods looking at my ct hips this week. I hope they can do a hip replacement, I have so much pain . Take care everyone xxx k

[chrisp1e]

Val - great to hear your good news and sorry to hear that you're having more bone problems. Hope they're not causing you too much discomfort.
Val and Lemongrove - both of you are so knowledgeable about bc and the current treatments and SEs. You are an inspiration and an encouragement to all of us.
Agree about this site being a nightmare. I've posted on a few threads at times and then haven't been able to find them again!
I've been really tired this week. Some days have slept round the clock!
Regards to all of you boney lassies!
Christine xx

[lucinda]

Val good luck with mri's,my personal pet hate-just can't cope with the being closed in feeling.I echo what the others have said,please pop in now and then as you have been the mainstay of this thread.I think you have done more than your share in keeping this thread going and you now need to conscentrate on yourself,but I am sure all us boney ladies need to hear from you now and then.

Alex PM for facebook details.

Nicky so pleased you are still a stable mable,I have my 6 monthly scan just before Christmas and hoping for a nice christmas present ie a stable mable confirmation.

Lxx

[nicky08]

Hi Boney ladies, I hope you are all doing well and coping with any treatment that you are having, by that I mean any changes or different treatment as I think we are all on one type or another.
Val - I have to join in with everyone saying please don't leave us 🙂 You have helped so many ladies on this site so even if you only pop in now and again we'd love to hear from you. I think it's us secondary ladies that feel the most frustration with the new site as we've been here the longest and will continue to be here whereas primary ladies do come and go as they most often dont need continued help or support once their treatment is over. So, hopefully they haven't noticed how dire this all is and get the support they need from others in a similar position. I certainly don't help as much as I used to as I can't see the bloomin' posts as easily - after all we are now up to 262 pages of 'Latest' Posts! Hoping you feel better soon - by that I mean less Wabbit - whatever that might be!
As to Stable Mables, I'm still one of them - hooray. I saw my onc the other week and all is well. I have requested a CT scan for my next appointment in 6 months time but other than that no changes 🙂 I will post on the Stable Mable thread as well to try and get it within the first 50 pages of Latest Posts LOL.
Nicky x

[Ramsfan55]

Meant facebook group!! Need to know what it's called x

[AlexD]

Thanks Mrs Blue. I just had a quick read of some of the posts on the mabel thread and it lifted my spirits.

Alex
.

[Happyfeet]

Val and Lemongrove - have written on the Xeloda thread with a thank you. This site is a disaster

[scottishlass]

Suzanne, I don't know the answert o that one.
I am not having a CT scan.....it is 2 MRI scans....just typed it incorrectly. I have been out today for a walk and feel human again but worried about the pins and needles in my hand and now know why my Consultant checked my hands out....but she did not tell me why exactly......Mmmmmm.
Hello Mrs Blue, ( me waving back) have added a reply to the 250 page thread. No reply from BCC as yet Hmmmmm. Val. X

[mrsblue]

AlexD: recent posts on the Stable Mabel thread are here
http://www.breastcancercare.org.uk/community/forums/yay-another-stable-mabel?page=3
(waves to all Mabels, past, present and future)
Mabel aka MrsBlue

[Ramsfan55]

Hi can someone tell me what the group book group is called ?
Suzanne x

[na7asha]

Val - that's ace that you're still just boney, I'd consider that quite a result, good for you.

I don't post much on here either, simply because I tend to be online on my phone and I can't post with it. Tend to use facebook more as it's eaier. It is a shame this is less active as you guys really lifted me out of a very dark hole when I was first dx. Val, you shouldn't feel responsible for helping newbies though, if it's too hard, don't worry. There are enough of us cover.

Hope everyone is OK. I've ticked off 2 cycles of FEC now and still no side effects other than losing my hair. Woohooo.

Love to all xxx

[scottishlass]

Thnaks girls. I got a letter through the post today for my CT scan which is on 2nd November....except there are 2 appointments one for my whole spine and the other for my Brachial Plexus whcih I had never heard of. Since I have looked it up I have a bit more knowledge now and it would explain my numbness in my fingers.....just do not want to go through another operation if that is what it leads to....if I could cross my fingers I would!
Feeling Wabbit ( scottish followers will know what I mean!) with no energy and have not been out of the house for days. Want to today as I am so fed up with these four walls although the Ken Folett book called Lie down with Lions was great to read while horizontal! My Oh has the cold so he has not been feeling great this week either. Now away to get some clothes on as I have been lazy all morning.
Thank you for your PM EllisB. Will Pm you soon. Lobe to all bony people and other Secondary Ladies too, Val

[AlexD]

Val I am sorry to hear that you are not feeling well. The blood may give you a bit of a lift. As others have said you are an inspiration to many people on here.

I also now only follow a couple of threads. Is it me or are there less active threads for women with mets on this site now? What happened to the stable mabel thread?

Look after yourself and keep in touch.

Alex

[myfanwy18]

Val, sorry to hear you are feeling so low. You have given us such support and I wish I could return it. I do understand how a low red blood count can make you feel particularly low as you have advised me in the past when I had the same problem. Sorry to hear about your bones but good news it hasn't spread anywhere else. I hope after a blood transfusion you'll pick and start to feel brighter. My Onc wouldn't give me a blood transfusion following my last blood test as I was 9.7 and on the cusp as he put it. I do suffer with dizziness and pounding in my ears when I get up quick though which is a nuisance so might insist on one next time if bloods are still low.
Take care of yourself.
Love Claire

[Ramsfan55]

Val I do hope you get your mojo back soon, but you have been through a very tough year with losing your beloved mum and then the hip replacement. You are bound to be feeling like you are. Sounds like you need some quality family time to help replenish your batteries. Try to stop worrying about everyone else for a change x
thinking about you
Suzanne x

[Lemongrove]

Val, really hope you perk up soon, and that your current set backs are resolved quickly. You mustn't leave the site, because you're longevity is a constant encouragement to those of us who sometimes feel in absolute despair. I agree that the site is almost incomprehensible, but it's better than nothing (and maybe BCC can iron out the problems).

[lucinda]

Val sorry ct has thrown up more problems for you,I hope it is not causing you too much distress.Hope the bloods make you feel a bit more energised and you get your appetite back soon.Take care of yourself.
I know what you mean about trying to keep up with the posting.I really only follow this thread and I do feel sorry for any newbies who need advise but i find it so hard to follow threads now.

L xx

[vercors]

Glad to heat your good news Val, I hopemthe new cracks don't cause too much pain. I am a bit like you, I only follow a few threads, I just can't get my head around the new site. Saw my onc today, he seems happy, CT in 3 months time. Can't complain.

[scottishlass]

I got my Ct scan results on Friday. Good news is not spread to other areas. Bad news is that two cracks found on vertebrae at top of spine near neck and another new fracture in my ribs that I didn't know was there. Now awaiting CT Scan. Bloods showed HB was 9.5 last week so Oncologist wants me to repeat bloods next Monday to see if HB dropping again as I feel tired again and lack of puff going up stairs. Appetite as not so great again since stopping steroids but trying my best to eat more than I really want. I had put on about 2 kilos while on the steroids which was good as was losing weight all the time and did not want to lose any more. Not coming on to the BCC site so often anymore apart from this thread and one other. I just find it so hard to give any support to newbies and find the new layout really a step backwards. Such a shame as I did try to give the site time to settle. Anyone is welcome to PM me anytime but finding the site hard now. Hugs to all bone mets ladies. Val

[golightly]

Hi everyone xx lucinda thanks for your encouragement. I think I'm looking for a more informal meet up for those that feel well enough. I can see that it might be fraught with problems.....I think it would be once monthly....well I will see! Thanks val too.
Hope everyone was able to enjoy their weekend.....nearly Christmas! Xx

[LYNDYLOO]

Morning everyone, thank you for your response to my question about the results of scans. I never realised you ask for a copy. I still go to see the ONC every 3 months I never get a letter or anything from the either. When I next go I am going to ask. By the way will I need to write a letter requesting the information.

On a different note went to see my Consultant a couple of weeks ago regarding the next stage of surgery. I had a restruction in January this year where you take the musle from your back to create a breast they also put an expander in at the same time. I am now waiting for the next stage where they take out the expander and put in silicone implant Also at the same time they are going to reduce my other breast, until I asked he was not going to do the reduction. I said to him I may be 60 but I still want the same size breasts. How would I get a bra to fit with one being a D and the proper one being a DD/E and more droppy.
Anway enough about me hows everyone feeling this morning. It is a lovely morning here in the North East.
Take care boney ladies.

[lucinda]

Godlightly
It really depends upon what kind of support group you are aiming for.If you want to set up a group Macmillan do grants and will give you guidance.I meet up regularly with some lovely supportive ladies I met through this forum,we meet up in a pub for lunch.The aims of our group are to support each other emotionally,share treatment tips and have a few laughs along the way.I have found it lifesaving.The thing to remember about a secodary group is that it is likely everyone will be on some kind of treatment and finding convenient dates tends to be a bit of a logistical nightmare.I really hope you manage to set up a group,it is a really great thing to do and everyone gets so much from it.Good luck

Lxxc

[golightly]

I didn't notice any errors val! I always go on here very late! Thanks for your helpful comments, you are a really fantastic lady!

Lisalauren, sounds like your mum is very shocked and traumatised by her diagnosis. I don't think that rads cause agitation, more fatigue and nausea. Things have happened fast, she is adjusting. She is bereft. She may need to see one of the oncology doctors to check if there is a drug reason for your mums behaviour. It just takes time to adjust to this, and everyone is different in how they react and cope. You are being both caring and sensible to come to this forum. I'm sure your mum will find peace but it is such early days. I'm a year nearly since my diagnosis and I'm still shocked to the core. Be comforted that there are many of us here doing really well and radiotherapy has been just amazing for me...I could hardly walk or lift my foot, now it is so much less painful. There are so many sources for support, it's finding the right thing your mum is comfortable with when she is ready. I hope your mum finds some comfort that she isn't alone xx take care, and I hope this weekend is better for you.

Hope everyone has a bit of In their weekend! Xxx

[Lisalauren]

Good evening to you all
Mum has finished her rads today and is feeling very irritable, she says she has no patience to watch tv or sit in the living room with us all. Seems like she is more relaxed in her bed. Is this normal after having the rads?
Thanks all xxx

[scottishlass]

Golightly, sorry about all the spelling mistakes in my last post. I can hardly understand it myself! Was shattered yesterday and had to drag myself back to bed! Well done for making sense of it! Val X

[Lisalauren]

Thank you to all you lovely ladies that took the time to calm my nerves.

Herbgarden - mum had a spinal met so this causes her a lot of pain if she makes a wrong move. She is on her last rad tomorrow so hopefully she will soon be feeling less pain.

Scottishlass - I have emailed her nurse this evening so I do hope this time she does get back to me as the last time I never heard back from her! . If I don't hear from her I I'll make a special trip to see her at the Breast clinic.

We have a cancer centre near our home here in London that I contacted today and they offer support and help so will try to get mum down there when the effects of the radiation have calmed down.

Hope you all have a lovely weekend, and many thanks for all the support you give to us.

Lisa and Judith

[golightly]

Thanks val, that's really helpful xxx will contact you if brick walled! Lisalauren, it depends, but my bis phosphates started straight after radiotherapy, in fact I mightgave just been finishing rads. Hope this helps. I was very traumatised by my dx and the bc nurse coordinated my support network. You really need as much as possible xxxx

[scottishlass]

Hi LisaLauren, when I got diagnosed with bone secondaries 13 years ago I was in a very poor physical state. I could hardly lift my leg onto a small stool to step into our caravan, I was bent over and looked years older than I really was. Mentally I was in a poor state too as I had been back to work for ten years since my original dianosis and thought that was it, that the cancer was gone. I am now 62 and feel and look better than I did back then. But my pain is under control and if your Mum has pain that can REALLY drag you down. If she is in pain she may need to speak to someone to offer something stronger. I am on morphine and lots of people are scared when they hear that word. But I have been taking morphine for 13 years now and am on a lower dose than I was at one point. I do not know why they have not yet offered her Bone strengthening drugs but you could phone the BC Nurse yourself and ask if it is on the cards for Mum and you coud mention to her that your Mum is struggling and what you have told us.
Golightly, we have a secondaries support group at our hospitla in Edinburgh that meets once a month. i have only been to 2 so far but the group must have been runnign for around a year. I know we hope it in the Mcmillan centre and that someone from BCC attends and is sort of in charge of the meeting. You coaud call BCC and see if they can offer advice or details obout how the Edinburgh group works or ask Mc Millan likewise. Let me know if you come to a blank wqall and I wil see what I can do from here. PM me incase I miss your post. Val

[herbgarden]

Hi LisaLauren, I'm so sorry to hear how distressed your mum is.
My mum was diagnosed with breast cancer in her early 70,s. she underwent surgery, and radiotherapy. 13 years later she was diagnosed with a secondary in her hip. she was started on arimidex...that was 6 years ago. She recently celebrated her 90th birthday with her family around her.
Why is your mum having difficulty walking? Radiotherapy is very good at dealing with pain.....so there is every liklihood that this will improve. Do the doctors treating her realise how upset and withdrawn she has become? There are usually a variety of ways they can offer further support....or her GP if she has a good relationship with him/her. Best wishes Pamx

[Lisalauren]

Thank you all so much for the support and kindness that you have all shown. Today was my mothers 3rd radiology treatment. I went to see her after work and she was in a terrible state, she asked if she would ever walk normally again like everyone else around her. Looking into her eyes I could see the sadness and this broke my heart. I try to comfort her by telling her stories that I read on this forum but she does not want to know about anyone else as she says everyone is different and probley not as old as she... (she is 65). She has 2 more treatments of radiology this week and the arimedex that she takes daily. Would any of you know how soon after the radiology she would be offered some bisphosphates?
Many thanks
Lisa x

[golightly]

Lisa, I think you have had excellent advice from the great ladies on this foum. I hope you have found some comfort, and that your mum is less distressed. I have to see a psychologist every couple ofhelped to help me with coping mechanisms etc. it's really hard but we all manage to have some good times still xxxxbless you for coming on here and seeking help xxx

I didn't know MY1u either, but feel very sad about the news. Like juls, I thought I was pretty young to be in this club (that none of us wanted to join!) at 41 at dx. So awfully sad......sounds like she was very lovely and witty.....
Nina, I'm ticking over on Letrozole, zoladex and zometa and ive had some healing too......there is hope xx
Thumbie, hope you are doing ok, sorry about you having to deal with more crap xxx
Love to everyone...we need it.....!
Does anyone here have experience of setting up a secondaries support group? I'm really keen to do this in my local area. I'm not sure where to start. Do you think an informal meet up for coffee would be good, or a room booked in hospice ? That might be a little off putting, but maybe day hospice might accommodate us....hmmmm! Any ideas or suggestions very very welcome! Xxx

[vercors]

Nina, I am on Ibandronic acid, letrozole and herceptin. My bone mets are showing sign of healing, sofar. So good. Don't give up hope.

[scottishlass]

Nina, there have been periods when I have been off the Capecitabine and only on the Zolidronate and Femara. I had 2 and a half years gap between one lot of Capecitabine and then re-starting it. Perhaps this chemo is working for you.I hope it has. I have been told that if this chemo does stop working that there are other drugs they can try like Vinorelbine ( something like that). Let us know how things go. V

[juls1974]

My thoughts go out to MY1u family and friends, that is so young to pass away. I thought I was young being diagnosed with secondary's at 38.
I just hope that a cure is found for this horrible disease soon.
Love to you all xxx

[broomsticklady]

I feel bad posting this in the midst of grief, but it's a question which has been bugging me for a few days. I'm due for my end cycle 3 of Cap bone scan in a few weeks and I'm panicing ()my nature to be black unfortunately) about the 'what if' Cap not's holding my bone mets - they are 'all ' I have even if rather a lot of them. Hormones have failed me, I'm HER-, I have 1 vein (!) and the Hickman I had during FECT gave me septicemia and they nearly lost me so I really don't fancy that again or a PICC. Portacaths aren't used in aberdeen (confirmed with my Macmillan nurse).
Is anyone ticking over on just ibandronic acid which is what I'll be left with?
Nina