Eve I might just join you swaying to the music. To all my lovely honey friends hope you have a comfortable enjoyable Christmas, she´s hoping 2014 will be a kind year xx
Thanks Vercors and Nicky - yes, it's a funny place for me to be. The scan picked up lots of arthritis in some very strange places! However, the right hip uptake has not been put down as arthritis so I can only think it is something else! As you say, I am in very good hands. They may do an MRI I suppose or another CT which is more detailed, I dont know really. Otherwise just wait for the repeat pet-ct. We'll see.
Hope all of you who contribute here/or just sneak a look have a loving and peaceful Christmas and New Year.
It's nearly christmas and I am celebrating that I have done a full year!! DX 13th Dec 2012 with MBC.
I have no new primary tumors, the Stomach biopsy came back as imflamations. I am still responding to treatment Herceptin so here's to 2014.
I wish all you lovely bone ladies the most wonderful christmas days that you can possibly have. I know that this year I am going to rejoice, sing, dance (well maybe just sway to the music). Get drunk and hug and kiss all those that I love.
Also I want a tatoo!!!
I send you all from Spain the best for the new year. Less pain and treatment that continues to work.
Love to you all. xxxxxxxxxxxxxx
Thanks Ladies, I am now looking forward to Christmas
Great news as well Buffy. I hope you are not overdoing it at work. I work full time from home, I don't think I could be in an office all day everyday anylonger or commute for that matter.
I know too well what you are going through. It took me a all day to realise that I was stable and that my lump was not cancer as in our head everything has to be cancer. In my case my onc thinks it is arthritis. I am also trying to take into consideration that I am also ageing (just had a big landmark birthday starting with a 5, a couple of weeks ago) and together with the fact that I have been articifially menopaused, my body is no longer what it once was.
I figure, if it does not bother me AND it is not cancer, I am now allowed to relax.
I hope you are able to do the same and enjoy each day as it comes.
Great news Buffy and vercors, it's what we all want to hear (either about us or others!) and I'm sure it will make your Christmases even better than it was
Hi pollym - yes it's a bit of a mixed feeling when you get good and unsure news at the same time! All I can say is that it sounds like you have a good oncologist who is keeping a very close eye on you - which is far better than scans being dismissed as inconclusive. I'd enjoy the moment if I were you and know you are in good hands and, presumably you can contact them should the need arise before your next scan? Also, that you're back on Tamoxifen will give you some peace of mind. Areas showing up on scans can be non cancer related as far as I know such as wear and tear or other bone changing conditions and I'm sure the last thing they would want to do is stick you on inappropriate treatment until some other proof is seen.
Wishing all bone mets ladies (as well as other mets ladies) a Happy and peaceful Christmas with your loved ones.
I posted a couple of weeks ago as I was going for a pet-ct scan. I had pain in my right arm and weakness, and have also become sore over my left chest wall area. I got my results today and my onc said that 'nothing dreadful' has been reported. In the areas I had symptoms nothing was highlighted. However, there was mild uptake in my right hip which they cannot discount and say is not cancer. They are therefore going to have a team meeting with experts to look in more detail at my scan - she said I may be sent an appointment for another scan of my hip but she wasn't sure about this. In any event I will have a repeat pet-ct scan in 4-6 months. I have also been put back on Tamoxifen which I finished last year after 5 years. She is doing this no matter what my results due to the fact that research now shows a benefit to take for 10 years as I'm sure you all know. She said if it is bone mets that the Tamoxifen will be good for treatment anyway. I am seeing her again in 4 weeks to discuss any further scans.
I don't know what to think really - at first I was really pleased as I have had a bad feeling over the past couple of months and it seemed like good news. On reflection I suppose I am now worrying about what this area could be. I thought that the combined pet-ct scan made it much easier to discount false positives? I wonder if any of you have any experience of this which you could share with me.
Good to see some activity on the thread and great news both vercors and buffy!
Hope you are all pacing yourselves with Christmas preparations - we need to make sure we have enough energy left to enjoy the festivities!
In case I don't get cack on before, I wish you sall a painfree, contented Christmas xx
Hello everyone, just looking for a little information and advice. I am having a PET-CT scan (which I had not heard of) soon to look for any sign of secondaries. I am almost 7 years from my initial primary diagnosis, had FEC, taxotere, radio, Herceptin and 5 years Tamoxifen. Finished Tamoxifen 1 year ago.
My symptoms are around my chest and back, just all kinds of aches and pains and a tenderness to touch around the site of my mastectomy/breastbeone/ribs? for past couple of months. I have wondered if it was regeneration of nerves but is it possible for this so long after my op? I have also had a painful upper arm/elbow on other side for about 2 months with a slight pain sometimes in shoulder - my GP didn't know what it was but mentioned compression of nerve? The pain on the right arm is constant every day when I move my arm. Would this kind of thing be a possible symptom of bone mets?~The pains come and go in chest and back.
I have had a clear chest x-ray and my bloods are okay. I am not overly anxious as I am well aware that there are people with much bigger worries than me - but I am stressing a little. I was prepared to wait and see with the pains but my onc thinks I have waited long enough! Any advice would be welcome.
Hope it is okay to post here - I couldnt find any threads any more for worries about secondary breast cancer so I hope nobody minds me posting here.
I am thinking about getting my eyebrows tattoo'd because they are a bit of a mess and I am fed up with eyebrow pencils. Possibly I should get a Teddy Bear tattoo because that is what I am coming back as ... a pampered Teddy.
Going through a bit of a 'Metastatic Breast Cancer mid-life crisis' as I come up to 6 years since my MBC dx. Finding it difficult to concentrate at the moment, and keep getting the urge to buy a sports car (not that I would ever be able to get in or out of one of those). Maybe get a tattoo or have my nose pierced? Seeing the counsellor at the Hospice who is very helpful, and because I have seen him before I don't have to go over my back story. It was all set off my being moved out of my office at work, don't think I ever want to go back.
I tried to reply earlier but it doesn't seem to have come on to screen. Another thing to consider is that Tamoxifen and Letrozole work in very different ways, so there is no reason to expect Letrozole not to work.
Sorry you are going through a worrying time. I was put on Tamoxifen 2 years ago and it didn't work for me. I have been on Evorilmus and Exemestane since then and have had stable results although I may be due for a change after the next scan. ( in two weeks ) It has lasted about 17months and I am thinking that the Evorilmus may be the other drug he intends to use but am not sure. Exemestane is another AL like the Letrazole and it has worked for me after the Tamoxifen so try not to worry. Easier said than done though. I know! Like you I am ER pos PR pos and HER neg. Take care. x
I'm sorry you are feeling so down. It might help to talk things over with one of our helpliners. They'll be able to offer you practical information and emotional support. The opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000
Very best wishes
Tamoxifen failed me after 4 years and I have been on Letrozole for 2 years now. It has been really good for me. No furhter spread until I found a lump last week, but I don't know yet whether it is spread or not. Clutching to the hope that it is nothing nasty. I am also ER+ Her2+
I know how the mind work overtime and I am not going to lecture you on staying positive, but sending you a gentle hug, I know how you feel. xxx
Hi Belinda - thank you so much for your reply it is always so encouraging to see people out there 10 years on. I think I agree with you on the quantity issue as I have young boys and am so well at the moment. Will discuss with my Onc when I get results next thursday - will keep you in the picture.
I wish you good health and good luck. Chris x
Hi Chris, I have slow growing cancer too. I was diagnosed with bone mets in 2003.
My Onc and I know my markers are very accurate and I'm reluctant to let mine have too long on the rise because I'm concerned my bc may be spreading to new places or causing further problems for my bones and mobility later on. I had 4 and a half years of Capecitabine. It has side effects but I kept my hair throughout, it did not even thin and I used all the creams recommended for this chemo. Capecitabine can cause hand foot problems. My main side effect was cracked and sometimes painful to walk feet. My hands were never a problem. I had no sickness, no tum upsets and none of the crashing tiredness you often get with IV chemo. The dose can be tweaked as well if you have many troublesome side effects and a slightly lower dose won't make the chemo less effective.
After Capecitabine failed I had my first IV chemo, finished this summer and I'm now full circle and back with hormonals. The treatment I'm on now is Arimidex which I last took about 6 years ago. The gap in between has been enough to allow Arimidex to be effective to work for a 2nd time.
I could have tried a couple more hormonals before starting Capecitabine but asked my Onc what would be the most effective treatment if I wanted quantity over any less quality of life. I still opt for quantity over quality of life at the moment but so far I have also enjoyed a good quality of life. We are all different in what we see as important and this is only my opinion. Good Luck with whatever treatment you have next.
Take Care, Belinda..x
Thank you ladies for your replies - I feel (maybe wrongly) that I should exhaust the hormone therapies before going down the chemo road. Also as my original tumor was grade 1 how effective will chemo be as it tends to work better on the faster growing cancers. I just don't want to make myself ill with the treatment when I don't have many symptoms from the mets. X x
I agree with Julie that TM's are only part of the picture. My oncologist looks at them but would not change treatments solely on them if I am feeling ok. I was diagnosed with primary/secondary in bones in May 2011 and originally had just letrozole but after progression I have moved onto EE combination. The side effects for me have been similar to some chemos with mouth ulceration and tiredness being the two main ones. Due to mouth difficulties I am now on a reduced dose of 7.5mg(from10). I have not had Cap so do not know how the treatments would compare. Good luck with whatever you decide and best wishes to all the other boney ladies out there. x
Chris and 2cats, sorry your TM's are on the rise, don't forget they are only part of the picture, it's good that you are feeling ok within yourself. Hopefully scans will give a picture of what's going on. Sometimes is just a matter of changing hormones if you are hormone positive. Your Onc should be able to give you your options and explain the reasoning behind the choice. Not had EE or Cap but plenty of other women on BCC site have and both seem to be reasonably well tolerated and work for some people for quite a long time. Good luck to you both, let us know how you get on xx
Hi - can anyone help? My last scan showed only subtle progression of bone mets but my tumor markers have continued to rise since diagnosis in July. I have been reluctant to change treatment (letrozole) as pretty symptom free at present. However had scan on tuesday and will see next week if any further progression. My choices will be either E/E or capecitabine. I was diagnosed in July after 3 years of tamoxifen and have had the letrozole since July. Any advice would be apreciated. x
Liz yes I think it's wotyh finding out what the tral involves, don't be rushed into any decisions though, you'll need time to think.
Roberts good news about your Mum, you must be feeling relieved, thanks for keeping us up to date.
Thanks ladies for your reply.
Good to see you on here Nicky and am sorry that it has gone to your liver, wishing you luck.
Smartie - Thank you , i shall meet up and see what the trial is about and will decide.
All the best xx
Sorry to hear you have progression in your bones, but at least it's still keeping to those! Mine has moved to the liver and I'm currently on Capecitabine.
I know there doesn't seem to be many ladies on Faslodex so I can't point you in the right direction unfortunately, maybe start a new thread to see if you get any answers? As to the trial I guess that will depend on how you feel about it and what the trial is determining. Again, I'm sorry I can't help with that but maybe some other boney ladies can. Good luck though with whatever the treatment is and keep in touch.
Not been on here for a while but want some advice and support.
Just back from Consultant and i have had progression in my bones. She has given me a couple of roads to think about going down.
One is to start folsedex(?) sorry not sure of spelling. 2 Injections very other week but she also asked if i was interested in seeing someone at Charing Cross and going on a trial. I obviously need to see what the trial involved but wanted to see if anyone else are in the same position or have had these options.
I have been on Arimidex for 2 years
thanks and love to all ,
It's been very quiet on here. Just looking in to say hello to all my boney friends and hope you are all coping. Besides having a really nasty upset tummy for the past 10 days or so I'm doing ok.Getting colder down South but no snow yet. Keep warm girls xx
If it is basically two working weeks until someone sees her at the hospital they please call today and get an earlier appointment.
If mum has a cooperative GP then it might be worth getting them involved to get things moving, or a referral to the local hospice. Don't panic at the mention of hospice they are all about making the most of life until the very end, and most of the pain control advances made over the last couple of decades have come from the hospice movement. They are THE experts. Hospice also has counselling, alternative therapies and other things available for the patient and the family to help with the stresses of living with MBC. You will need a referral from your GP and the hospice should be able to respond much more quickly than the hospital.
Good luck, Vicki xxx