Hi Louisa, my name is Janette im one of the newies, im being started on Denosumab in a few wks just wanted to pick tour brains about it, you say you would rather Xometa??? is the Denosumab not nice to have??
Yes im like you i under state my pain, iv been given zormorph, morphine and MSTs but have got to be in agony before i will give in to taking any of them!! scared the more i have the more my body will need.
Iv been put on tamoxifen for secondaries got mets in my hip, spine and ribs, had breast cancer 2007 grade 1 no chemo just radio was told by my onc that i had a 98% chance of it never returning!!!! i am totally devastated i still cant quite believe this is happening to me.
Had radio to my hip for pain thursday omg they told me it would get worse before it got better and it did!!
love janette xxx
Lovely to see you posting here again. Hope you are keeping well and enjoying the Bank Holiday weekend.
Hi Nicky - dont get too anxious about the irradiated area getting "worse before it gets better". I've had pretty big doses to my hips. ribs and spine. I had no after pain at all in my hips or ribs. The spinal (sacral) area was a bit tricky afterwards and i had to call out nightime docs. but if I had been warned beforehand and had an "action plan" in place, I could have coped much better. I will always make sure of this in future. This disease is so individual that it's hard to predict how we will cope during and after treatment.
Hello to all you new ladies -I am two and a half years since dx. Primaries and secondaries ( bones and two tiny suspicious areas in the chest wall) were diagnosed a couple of weeks apart = it fair sends you reeling, doesn't it? I feel very well but sore and much much older than i used to feel. I think i under report my pain to the docs as i don't want to be a moanie old nuisance. Does anyone else out there do this? I'm being treated with hormones ( two and a quarter years on Letrozole and now on Exemestane. I also get Denusonab injections once a month - in the arm. I did get monthly Xometa infusions until xmas and may return to them as I feel they were more effective and carried fewer side effects).
This forum has been very quiet recently. So sorry all you new folks have had to find yourselves here but it is a ver supportive place indeed, Never feel bad about coming on and moaning or being upbeat either - all our moods and feelings are valid
Love to you all
Seeing Belinda post has shamed me into posting! It is lovely to see so many newbies discovering this very select thread. I hope you will all find encouragement and support amongst us. Like Belinda I have been at this game a long time too. My initial dx was way back in 1990, with a few more primaries over the years until bone mets hit me in 2002. By then it had already gone all over the bones including all spine, hips, pelvis etc. and like a lot of you I thought my life had come to an end, or at least it would very soon. As each Christmas passed I would wonder if I would see the next one but the mets remained relatively stable with a bit of help from the rads team. I have been on different forms of bisphosphonates over the past 14 years, currently on zometa. Just before the bone mets was diagnosed I had a lot of swollen lymph nodes around my neck and was on chemo for that but they didn't prevent them coming each time the chemo ended. It was then my onc checked out my her2 status to discover I was positive her2+++ so went straight onto herceptin beginning of 2004 (just had my 159th dose of it!) costing the nhs a fortune and hope to continue to do so. I won't say it has always been easy and the last few years pain has become an increasingly difficult problem to control but I consider it a small price to pay for having 24 years of LIVING with breast cancer.
Hi Caroline, i am also new to this site, iv also got bone mets to my hips, spine and ribs, i am only 46 and like you i keep asking myself "why me" what have i done so wrong for this to be happening, im angry, hurt, upset and devastated but do you know what Caroline us women are made of strong stuff and are toughies.
wishing you all the luck in the world and sending you a hug love Janette xxxx
Hi Helen, thank you for your reply you have all been so friendly and welcoming,
had my first zoladex injection on Monday and have had a lovely bruise since!!! i also have to have my (bone juice) Denosumab this way so hope im not going to forever stuck with a bruised tummy!!
Thanks for the hug sending you oneback love Janette xxxxxx
Hi Nicky, thank you for your reply it was so nice to see that i had got some replies as wasnt sure i had done right!! re: the bone strengther, im being started on Denosumab in the next few weeks i have this once a month as an injection (subcutaneosly). Had some radio to my hip area at the Christies (oh what lovely people they are up there) had a rough night Friday, i was told it would get worse before it gets better so was prepared for this but not feeling to bad now keeping up with morphine tabs so im sure thats helping.
So far i have found this site really helpful, when i got my diagnosis a few months ago i more or less wrote myself off but to read that some ladies have been living with this for years is a real confidence boost!!
Thank you so much for your reply
I'd like to add to all the hugs you have had sent - do hope that you get everything sorted when you go to your appointment in June. You sound a wonderful person and have given such support to everybody on site. With lots of hugs, Jackie xxxx
I hope you're having a better day today and being looked after and pampered.
Sending uplifting and good thoughts your way.
I think it has already been mentioned but if you have a PALS centre in a hospital near you they might be able to give you some help to chivvy things along. The more 'official' people that know your position, the more they can look into it and question your team's slow action. I can't remember if your GP is any good, but he can ring them/send a letter on your behalf as well.
Obviously this is only if you feel up to tackling the (insert expletive here). You shouldn't have to be going through all this. (((((Helen)))))
Just adding my support here too. If you don't get satisfactory service on the 2nd of June you must change hospitals. If you have faith in your team you will feel so much better. You could get in touch with who Lulu suggests in the meantime so that you know what to do if necessary.
Wishing you the very best. Love Sheila xx
I'm not surprised that you are having a down day today and saying how you feel is not moaning. Here's a hug ((((Helen)))) and hoping you get answers on the 2nd. Are you having the CT scan then or will you be getting the results?
I understand the wanting to give up - it's just one thing after another and it wears you down. Hopefully after you have got all of your results you can see things moving forward in a good way.
Lulu - can you point me in the direction of some studies on removal of primary? Mine has grown since mets diagnosis, but nobody seems to be interested.
Sorry to hear that your Mum has had the bad news that she now has bone mets and we all know what a huge shock this can be (and is). I don't think it helpful that your Mum's oncologist/Dr gave a life expectancy at all, let alone saying it was only a few years, As I have seen over the years that I have had bone mets (6 years and counting!) there are many ladies living long and pain free lives with this type of mets and, as been said already, there are newer treaments coming along all the time. The statistics are way out of date and I remember reading this 2 years nonsense just after I had 'survived' my first year with bone mets and thinking 'I've only got a year left'! It really doesn't help!
Hopefully you will read the inspiring stories on here and also the posts on this, very long, thread to see that there are many treatments available and I hope the ones your Mum is now on will help her with her pain and keep the little uggers at bay for a very long time.
I just had to add a comment, along with all the other ladies who are supporting you. I cannot believe that your 'team' (and I'm using that term loosely as they don't all seem to be on your side!) have not taken notice of your previous concerns and it has taken this long to get an ultra sound, let alone a CT. I am really shocked by this, especially as you have felt that things weren't right. In my experience the oncologists say we should voice our concerns as we are the ones who notice what's not right and then they can act on it.
I know this puts the emphasis back on you but I would push for an immediate appointment with your oncologist, not wait until the scheduled one, to discuss these findings, as your BCN is not the person to arrange a different treatment plan. Also are you able to request, before an appointment, a CT scan as well as a core biopsy of the new breast cancers that have shown up? It may be that these are a different BC type to your bone mets (this can happen) and therefore they have not responded to the current hormone treatment that your bone mets have. Just a thought as my receptor status has changed since primary and secondary dx. All of this I know is a lot for you to have to deal with but I am so angry at the way you have been treated that I really felt I had to add something.
Sending you lots of hugs as well.
Sorry that your mum has had this news and I understand how shocked she must be. But please don't go by statistics! They are well out of date. I was diagnosed nearly 3years ago with secondaries to both lungs and still have no symptoms from these. When I found out at first about this my daughter did exactly the same as you have done and searched for advice on various websites. She found ladies who had been living with secondaries to the lung for 5 years and longer and this gave me hope. I'm still here and doing well although I have had progression since then. This is being treated and I am still positive that I will be here for a while yet.
There are ladies on here who have been living with bone Mets for 10 years so please tell your mum to try to remain positive.
Love sheila. Xx
Helen, good news about the bones - pants about the new tumours and your bcn/hospital not listening.
I too hope your appointment is for the first week in June. I'm not sure who you would complain to, but you can ask to see the consultant (not their registrar) and ask for an explanation.
I had a mastectomy a few years ago now. I went down for surgery at 4.30pm and was home by 11.00am the next morning (with a drain in). I didn't need any painkillers and only took a couple of paracetamol to keep the nurse happy. My drain was taken out a few days later at hosp. I was able to put my arms (gently) above my head from the word go and made sure I did my exercises. Wound healing went a bit pear shaped and needed packing for a while, but I did that myself at home!
Huge hugs to you - if I was there I think I would be tempted to bop your team on the nose.
I am so sorry to hear your news. Have they given you a plan? Like the mastectomy and xeloda or something. It must be so frustrating and upsetting have this happen. I think they need to be more aggressive do you? Although I suppose if you have a mastectomy it may negate the need for xeloda as letrozole is working.
Thinking of you and hoping you have some good news soon.