Thank you for getting straight back me. Just goes to show we all seem to go on the web site frequently. I know I don't always post a message but I do go on regularly just to see how the regular people are getting on. You know when you started on Capecitabine did they tell you how long you would be on it for nothing has been mentioned to me which is scary in inself. At this moment in time I have not mentioned anything to work about my problems and progression on hip. Apart from Personnel no one knows I have secondaries which is the way I would like it to stay. My hubby works at the same company. He has been there 30 years and 10 years for myself. This weekend we are going out for hubbies birthday I am certainly going to have a good drink as once I start treatment can't see me going out at all. We normally go at every Saturday anyway. I keep saying to hubby I would rather have 6 months they way I feel now than 12 months feeling dreadful which reading the comments sounds anawful teatment. He hates it when I say things like that but that is how i feel. Hubby has just came in from work so better start tea. Take care.
I am on 6 courses of FEC-T for 6 weeks , got a headache for first 2 days but ok now , having one course every 3 weeks then tamoxifen and also will be starting denosumab next course of chemo 21st of Feb
the headache has gone today and I feel a bit tired but I am not sleeping well due to steroids I think
hope this helps 🙂
Evening boney ladies
Not been on since last week when I asked about the e/e treatment. Got an appointment to go to chemo unit next week still really worried. Can't see light at the end of the tunnel. Did you ladies have to go to the chemo unit to get your tablets each month, As I said last week I work 31 hours at the moment. Did you ladies that were on that treatment able to work at all and were able to go out and about as usual. Does it cause to have a fussy head like on chemo which I finished 4 years first on fec then on Taxetere. No one has said how long I would be on it. Do you just stay on it till it stops working. Nicky have you been on this treatment as I know you were diagnoised about the same time as me with bone mets. Sorry to keep rambling on I am just really scared.
Thanks Nicky 🙂 that's put my mind at rest the next hurdle , they also mentioned I will have another drug every 6 months but I cant recall the name my poor befuddled head ! They mentioned I would need to be monitored on the denosumab for calcium levels as I was asking about self administration as I am not needle phobic and have done sub cutaneous injections before , look forwards to seeing a link to any threads on this
Glad to hear the denosumab hasn't got many side effects tho 🙂
Yes, there are quite a few of us 'boney' ladies on Denosumab. It's the newest treatment available and, in my opinion, the easiest and quickest to administer with no nasty side effects. It is given 4 weekly by subcutaneous injection ie under the skin rather than into any veins. Mostly it seems to be given in the fatty area of your stomach but some ladies have it in their upper arm. Hope you get on well with this as well as the FEC T chemo.
ps I'll try to find the Denosumab thread I started and 'bump' it up to the tope of the page - can't remember if it's in the treatments section rather than this 'living with' section but have a look in both.
hello Ladies ,
I had a met on my sternum and am on FEC-T chemo had first dose on Friday , they say with my next chemo session I will also start Denusomab - is anyone on this ???
I had 4 years between primary and secondary so yes my hair grew back thick and very curly for about 18 months; I stopped using scarves about 3 months after I finished chemo. I kept very short hair for about 2 years, as I hated the curls.
Letrozole is an hormone therapy, like Tamoxifen: http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/hormone%C2%A0the...
Okay that's reassuring to know, what are those meds for if they are not chemo? Because my oncg did mentioned down the road she will wean off some chemo and maybe put me on other things, Im assuming that? Also has your hair grown back fine etc? And a worry in the back of my mind, I am young, I do want to one day become a mommy... Do we have a future in that..? Thank you for replying to me xx
ALso Her2+. While my bone mets are now greatly reduced, I will never consider myself as NED (unfortunately) but as stable. Stable is my favourite word.
I have bone mets, but I am not on chemo. Letrozole, Herceptin, Zoladex and Ibandronic acid.
Hello All xx
I am also a her2+ I've been diagnosed for a year now, had a lumpectomy done and been on herceptin/perjeta/toxeter regimen. Unfortunately my CA spread before I started chemo down to my pelvic bone . My doc says I've been doing good with my chemo its been looking stable, I will be having my mastectomy in a few months. Do I worry because it spread? My oncg says things like I will be on chemo for life, that word frustrates me! Will I be? When she says im looking clean am I considered NED? Will I ever be considered that? Or no because of the spread? (scared)
Hi Lindy Loo - I am one of the ladies that has posted on the EE thread. I have had bone mets now for nearly 3 years, diagnosed with primary. Letrozole worked for me for over two years but last Sep I commenced EE. I think the side effects are not always explained fully - I found the mouth ulceration awful straight away so had my dose reduced after a month to 5mg one day, 10 the next. Didn't really suffer from spots but last scan in December showed some fluid on lungs which is another known side effect. Over the last couple of weeks I have had swelling in neck lymph nodes so I do not think it is working now. Currently awaiting an ultrasound and then depending on this may have to change treatments.Given the side effects I will not be that sorry but I know that some ladies have had really good success so like everything else think it is a bit of a lottery. Good luck xx
Thank you for getting back to me so quickly. Managed to read the comments on the link you sent. The side effects sound horrendous. I am not due to go the drug for a couple as the hospital has to apply for funding. Can't see anyone been able to put up with sore mouth and problems with their skin. The more I read about it the more i am put off. In one respect can't understand why the hospital has deciided to put me on it. I have only taken letrozole which has worked fine for 4 years. I have a bone and CT scan or organs recently and what the hospital said slight progression in left hip and my tumours markers were going up. They started at 15 in 2010 and had stayed that way until January 2013 when they started to creep up gradually and are now at 41 which is just above the norm. The CT scans were all OK thank the lord. I have been on a website regarding the trial of everolimus/exemestane people are usally are put on EE when letrole etc has not worked. I unstand there are 7 hormone type treatments so there plenty more for me to try before going this this extreme. I am 61 now but still work 4 full days a week which I would like to carry on doing. Anyone on these drugs were they still able to work. One of reasons I work is take my mind of problems. Once again thank Liz and Lucy for getting back. Going to get myself a large glass of wine so night night for now.
This may be the thread you were interested in :
Thank you for getting straight back to me. Sounds awful. You did well keeping onto it for a year. I had terrible acne when I was a teenager and that was bad enough. I have been spot free since by late twenties. I have got really good skin now. I spoke Clare at the hospital who initially ran the trial for Ibandronate against zomata which I took part in. I informed her when I go on the tablets if they do not suit me I would be taken off them. There is no point in having a treatment that supresses the cancer then makes you feel really ill. I had enough of that when I was chemo which I finished 4 years ago. By the way what hormone treatment are you on now. I have been fortunate I have had a good quality of life. I still work 4 days a week. Love by Fridays. Enjoy going swimming a couple nights week. The way I feel at the moment I would I would rather have a shorter life feeling relatively OK than a longer one feeling terrible all the time it is not worth it.
I was on the EE combo for almost a year at full strength but due to recent progression have stopped it. Initially I had lots of side effects like hormonal type spots all over face and neck (lovely), tiredness and loss of appetite. I had other health issues when I started on it which turned out to be appendicitis and needed an op. That knocked me for almost 6 months and I put side effects down to that at the time. However, now I am off the pills, I think it was them that was making me feel crap. There is a thread on treatments about EE so have a look on there as there are peoples experiences throughout their use of EE.
I am just waiting now for my rads planning and blast next week for the back pain.
Hi Rowan. i was diagnosed with breast cancer in 2005 and with vertebral mets in Feb 2011. after a bit of progression on exsemestane I have been stable on capecitabine since feb 2012. In the autumn 2013 I went on short breaks to Granada and to Budapest. Both times I got insurance cover from MIA. (they largely cover european travel). I also went on a cruise. They wouldnt cover this cos they ahve stopped covering cruises....also we had 2 days in israel as part of the cruise. I did get cove with insurancewith......but it was hard work....the medical underwriter was fine but the ordinary call handlers were poor and didnt return calls....it was also expensive.....over £500....the cruise cost less than this!........it depends on where you are going but I would recommend MIA. Pamx
Quick update from me. Saw onc for plan as knew I had a bit of bone spread which was confirmed by mri. Going to have a rads blast to lumbar spine area and then onc is going to speak to neurosurgeon to see what to do about my original t9 met that has got worse and is nearing the spinal cord so we need to avoid compression. Come off current hormonal - everolimus/exemestane combo - and will decide whether to try another one, probably faslodex, or chemo. At least it was what I expected and the areas of pain correspond to the deteriorating bone bits.
Hi Rowan44, I have replied to your PM. Hope it helps a little but feel free to ask any questions as they come along. That is how we learn, little by little. There was a time when we were all new to this and have only learned by asking questions on here and sharing experiences, Hugs, Val
Thank you so much for your replies. The fact that there are ladies like you who take the time to share experience and give support and encouragement to others gives me great comfort.
Good evening all,
I really didn't think I would be back here.
I'm not sure if this is the right place to post, but I have just received a diagnosis of bone mets to the spine and it's only just sinking in.
My original dx was in 2009 - mastectomy and zoladex/arimidex - ER+, no nodes or vascular invasion.
Four weeks ago I was diagnosed with a new primary in my other breast. Mets were found on basline CT.
Reading all the posts from the forum has helped me be more positive, but I have to admit I'm scared.
Thanks all for the replies , I am glad we have this forum to turn to for answers , its really good to see others have gone through what I am going through and it gives us all strength , thankyou 🙂
Just to say I agree with vercors and Nicky about your queries. I was diagnosed with primaries and secondaries at the same time in July 07. Had to have chemo first and that got rid of the bone mets on my sternum. Keep visiting this thread and ask any questions!
HI Gill, Sorry you had to join this group but you came to the right place for support.
I have had two small areas of bone mets (rib and hip) for over two years, and after radiotherapy I have resumed normal life. I am now on letrozole, Zoladex and Herceptin.
I do travel both for work and play. Travel insurance can be an issue especially for the States. I ma covered by a work insurance for work but not for play. For play, I am off to France, skiing (onc is OK0 in Feb, and Morocco in April, and if I would like to visit my brother in Canada during the summer, but I need to check if they are as strict as for the US>
Eurotunnel used to be very good but they since have changed their policy. I would not travel anywhere outside Europe without a good insurance. Within Europe you are covered like any European citizen as long as you carry your HEAIC card.
I hope this helps. xxx
Reeling today , I went in to see the oncologist and it is confirmed I do have a small area of metastasis on the sternum , he is optimistic that with chemo and radio that they can hold it at bay and that I will be on tamoxifen and denosumab lifelong , that we are looking at years of continued treatment "for a long time "
any help or advice any of you lovely ladies can offer me right now would be appreciated ,
I want to go on fighting was hoping to beat this but I guess I have to live with it , how do I go about doing the things I have always done?
I love to go to rock concerts and have traveled abroad to do this sometimes ... Anyone been abroad with bone mets ? What about insurance ??
I need something to look forwards too ,
Its so nice to actually read info from another person suffering from cancer. My husband just doesn't understand the harder I try the worse he makes me feel. Yes I know I am a pain but since the cancer in 2013 our relationship has diminished and because he shows no love or anything towards me I have been to a solicitor. I have been through enough pain I just want peace. I just need someone to love me and tell me its going to be okay. I had a breast lumpectomy in November 2012 had two operations because they took some tissue off the right bust as well. I had radiotherapy on both breasts and I am on Tamoxifen. Just recently I have had pains in my right bust. Today have to go to my local hospital to see breast care nurse because I saw and out of hours doctor .My right bust is enlarged and she was worried so they are checking it out. Trying to stay positive but its hard when you haven't got any support at home.
Whoo have a brilliant holiday Helen.
And good luck with whatever treatment you're having next. You have many left in the store cupboard. I've also had a couple of treatments that did not even begin to work for me.
And wow have the most wonderful wedding Madge!
Hi Nicky! the U.S.A. is such a problem as are, I found, most places outside of Europe. I visited Australia and New Zealand twice before my diagnosis and would have loved to have gone back a few years ago but no-one has wanted to insure me for many years now. It probably didn't help I was honest and did tell of my one and only DVT.
Hi to all.
Have a good holiday Catlady.
Congratulations Madge!! What lovely news. I hope you have a truly memorable day. Good luck with the second opinion too.
Love to all bone ladies xx
I've not been on here for a week or so as I've been arranging my wedding!!! Wedding on the 25th Jan 2014, notices went in on NYE !!!!!!!!! Sorry to read about your BC, 2catlady (Helen), hope the Letrozole kicks in for you, and have a fantastic holiday. I've decided to get a 2nd opinion, haven't got anything to lose but may gain something from it. Reading the posts has helped me be more positive.
Thank you all.
Sorry to hear the hormones haven't worked for you. There is a possibility of your BC changing receptor status but I don't know if you have had any biopsies done recently - or are even able to have one done. If you do now go onto a chemo regime (alot of us are on Capecitabine) this will treat the BC whatever the receptor status is so I hope you get some good response to whatever they next give you.
BTW can I ask if you managed to get travel insurance for the US? This seems a constant problem for us 'secondaries' with premiums being skyhigh or even no cover being offered at all. I'd be interested as, although I don't want to go to USA, I want to check out some companies for closer to home ie places in Europe. Anyone else shedding some info on this? Would be gratefully received and I may try to find the old Travel Insurance thread to get it going again if we have anything to add.
ps enjoy that holiday