Hi Lucinda
I think that Letrozole (and Tamoxifen for that matter) never worked for me. The previous CT scan was before I started Letrozole and my liver has progressed from then. I am not too sure about my bones, as my onc seems to only tell me about them one vertebra at a time.
My onc did say he could apply for funding for me for the everolimus, but I don’t qualify for the study into who it works best on, where the drugs are paid for by the drug company (I think to help them get wider NICE funding). But, he reckoned the application would take upto 3 weeks to be processed and he didn’t want to wait that long to start more treatment. I guess we can keep that up our sleeves for when/if the Cap stops working for me.
Mind you, if the Everolimus has pretty much the same side effects as Cap (give or take hand and foot syndrome), maybe it isn’t quite the wonder-drug I was hoping for and I will be just as well off on Cap.
My BCN was going off on Friday to fill in some DLA forms for me (with the fast-track, 6-months form too), so I should get that through soon. I think I have some insurance covering long-term sickness, but I need to look out the paper-work, which involves my husband dragging a large box of filing out of the conservatory (rather than just talking about it). It is almost as much not wanting to sit around doing very little. My mind can still work well, so working from home isn’t too tricky - I just keep turning up late.
I hope the sort out what your hip problem is soon. I have crutches to help me on longer walks (half-way roudn Asda and other marathons), but haven’t had to use them int he house recently. Do you have any? If not, they can make things easier. Are you on Oramorph or a slow-release version. I find oramorph sends me to sleep for a couple of hours but the slow-release stuff doesn’t have so much of an effect (on my sleep).
Sue
Dear Forum Member,
I am here for my mom, she was diagonized with metassis in bone and liver 2 years after her breast cancer treatment. She is 70 and I am in India. The doctor who had treated her gave up ( You can understand life is less important in India - specially when they see a old person). I did not give up and went to other care center. I have since had radiation and 3 Chemo for her. Stopped 4th one as she was too weak. Asking doctor to restart after she recover. So doctor put her on 3 week meds My problem is she is too weak and she is not able to digest food. And has been vomitting a lot. So got her endoscopy of stomach and changed her meds. She is bit reliefed for now for 2 days.
Any advice from you all will be welcome. i want to do whatever I can for my mom.
Hi AbidAhmed,
Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.
I have put for you below links to some of BCC’s publications you might find helpful to read.
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bcc58
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bone-bcc30
Also, I don’t know if this will help you or not, but we do have some of our publications in other languages including: Urdu, Punjabi, Hindi and Gujarati. If you follow the links from the ‘Information’ tab at the top of this page to ‘publications’ this will bring you to the library of all BCC’s publications.
I hope this helps. Take care,
Jo, Facilitator
bumping up for andier,newly dx.
Hi ladies
I know some of you from the Bone mets thread but, after yesterday’s scan results, I now have to join you on the Liver and bone mets thread 
I will read back over the thread to get some idea of your experiences but I am to start Xeloda (Cap) next week after the A I’s I have been on since 2008 stopped working. I will also be reading up on that and probably asking a few other questions along the way.
Nicky x
Nicky so sorry about your results, the same happened to me a few days before Christmas.I had been on letrozole for 2 years and then my scan results showed progression to mets in spine and hips and now mets in liver.It felt like I had been hit by sledge hammer.Pleased you have your treatment plan organised, I had to wait 4 weeks for funding and that made it even worse.Have been on exestamane/everolimus for 4 weeks and so hoping it is working.
hope everthing goes well with treatment.I have to go to hospital Monday to collect my next script ,hopefully,providing bloods ok.
L xx
Sorry to hear your news Nicky… I know how I felt when my liver mets were found on a CT scan, in 2009 - devastated, having previously hoped that I was in the 15% who “only” get bone mets (statistic is probably out of date)
Hoping you and Lucinda do really well on your treatments. With me it took several attempts to find a good treatment, but now I’m doing well more than 3 years later, mainly thanks to capecitabine and good monitoring.
Thank you Lucinda and Mrs Blue. I had seen that you had recently received the same cr@p news that I have L, and that Mrs B has been doing well for the past few years, so there’s hope yet! My onc mentioned the hormone treatment, I’m assuming with the non funded drug, but he’s decided to go the Xeloda route first as well as the non funded new bone drug. Sorry, I’m not up to scratch on the new names, I soon will be though! So it all kicks off next Friday, fingers crossed I tolerate the dose of Xeloda well, and it starts kicking those little uggers back to where they should be! Good luck to all secondary ladies.
Nicky xx
Hi Nicky
Know just how you are feeling as I received the same rubbish news Nov 2011. Had 6 docetaxol which really blasted the little blighters but, for some reason, one has grown back again even though the others have all remained stable. So I am starting cape next Tuesday. We’ll be able to compare notes and side effects! Have read the cape forum and prepared myself with gloves and cream already. OH has even offered to do the foot massage!
Wishing you all the best and , fingers crossed, let’s hope that this treatment becomes a stable’ medicine For both of us. Good luck.
Liz x
Hi Liz
Yes, what a bummer! I will be sorting out my cream ASAP and I start next Friday. Fingers crossed for us both, and anyone else dealing with new treatment regimes. Lets hope we don’t have too many SEs!
nicky x
Hi everyone I havejus finished my first dose of cap and lapatinib and went to see onc on Friday had terrible SE but all l;ivable with except the pain in my fingers. They bleed and blister have used my udderley I often confuse it with utterley, but to no avail. So I have had a few days break before they start it again with 10% reduction. However I Asked doc. what were the results of a bone scan and ct scan I had at xmas as I was supposed to start trial drug but was refused at last minute because of heart function. I was told I had 29% heart function, two mets in my liver five bone mets lung and stomach mets were slightly worse. All in all he conceeded it wasn’t very good. I sat there shell shocked by the L. word grinning like an idiot and saying oh but you can survive with liver mets nowadays. I have had an awful weekend but now reading some of your posts I think I’m back on the planet and there is still hope. thank you ladies Keep well. And thanks Nina for telling me to read this thread x
Lanii ive also suffered with my feet first and laterly hands on capecitabine. at the moment I have one healing broken area on right ring finger in one of the joints but also most of te other skin creases are sore. I am using flexitol heel balm on hands and feet. This doesnt feel anything as nice as udderley cream but I do think it is more effective. At night I wrap my feet in clingfilm to keep the moisterizer in and wear disposible plastic gloves on my hands. Although I still have some probs I think they would be worse without the above actions.
Im really sorry to hear your other news…hopefully the capecitabine and latabinab will keep things under control. …Ive had some sucess. …celebrating a year of stability on cap next week. Pamx
Thanks Pam I will certainly try flexitol. Its great to hear you’ve had a year of stability long may it last! I have had lots of melt downs this weekend my poor husband gets it all 'cos i don’t want to worry the ‘kids’. But onwards and upwards drinking my 3rd JD’s ( my measures) maybe double that haha. take care x
Hi Ladies.
I’m reeling. I got the 5 year all clear on 2nd April, even though my body felt old, achy and stiff. The consultant said on tamoxifen I am bound to feel 10 years older - I didn’t mention I felt older than my MOTHER! He also looked at my records and said “oh yes, you had a bone scan last year, all clear”. That was it in relation to my symptoms.
On Friday I had a CT scan for another reason, and whilst I didn’t have a blood clot, they found multiple bone mets in my ribs and spine and “possible liver metastases” - as well as a suspicious area of soft tissue in my left breast (obviously missed by the mammographer earlier this month!).
It sounds as though I have both bone and liver mets. I have been reading the posts here, and they have helped me put together my list of questions for the oncologist on Monday. Stupid question for the day though - how do they establish if you do have liver mets? Will an ultrasound scan be enough?
It’s great to see that I can probably rely on being around after the Independence referendum in September 2014 - which was as far as I was allowing myself to be determined to be around! Of course, in that time I will also see my son graduate from uni this June and my daughter graduate June 2014.
All the best to all of you, Sue x
Hi Sue
My CT scan showed it was liver mets, presumably as there had been nothing there before on previous scans and that they must have showed as mets rather than cysts. Can’t help whether an ultrasound will be more accurate. Good luck for tomorrow, let us know how you get on.
Nicky x
Hi Nicky,
My CT scan was looking for something else and just happened to catch the liver, so I am to have another scan targetting that area and a bone scan too. Once we have that information I may have a liver biopsy (if accessible) and then we will be discussing treatment plans. Nothing apart from tests happening in a hurry so I can go off to Amsterdam with Curtainqueen, Whitedragon and AJ as planned at the beginning of May (our 5 year all clear celebration!) - good friends I have made through this website. Every cloud has a silver lining - if I hadn’t had cancer I wouldn’t have had these wonderful people in my life!
Will keep you in the loop
Sue x
Hi Sue
Hope all the tests go smoothly so you get a treatment plan in place ASAP. I have my first week off in months from hospital visits for tests, scans, appointments so enjoying the freedom LOL. All this since liver mets found and Ive barely being there over the last 5 years since original secondary dx so all a bit too medical for my liking! Enjoy Amsterdam, OH and I went a few weeks back and really enjoyed ourselves but it was still bloomin’ cold, hopefully when you go all the flowers will be out and it will be much warmer. Something to look forward to.
Nicky x
Hi all, I thought I’d add myself to the liver and bone mets club too. I was dx with BC in Dec and liver and bone mets a couple of months later. I’m on EC chemo and due to start bone strenghtener drugs next week - God only know why my onc has waited so long to give me the drugs, I’ve got a broken rib and 6 discs in my spine affected. I’m not in much pain suprisingly and coping really well emotionally. Work help a lot, plus my wonderful OH, family and frineds. Love to all xx
Hi Furryboots, and welcome to the place none of us want to be! I was dx with bone mets 5 years ago and initially had chemo, FEC, and then hormone treatment along with bone strengthers. Since Feb this year I have been dx with further bone spread and now liver mets and am currently on Capecitabine, oral, chemo and the new bone strengthening drug Denosumab. This thread can be a bit quiet, so I’ve found, but the Bone Mers thread is a bit more active and there are ladies in there with liver mets as well so the advice and support is very useful. You’ll find some threads more active than others and you can keep an eye on where’s best to post by looking at the Latest Posts page. Good luck with your ongoing treatment and getting the bone strengtheners. Although I initially had mets in the spine and hip I had no pain whatsoever, other than a twinge in my hip prior to dx, however my spine is now more badly affected and the bone strengtheners have definitely helped.
Nicky x
Hi again,
Got results of various tests. I have secondaries in bones - in a nutshell, everywhere from skull down, apart from lower arms and hands and lower legs and feet. I have secondaries in liver. One tumour 4.2x4cm and another 5x3.1cm and multiple other ones. Today I had a liver biopsy. Tomorrow I am having a power port fitted and I get my first bone strengthening drugs via that next Tuesday. I have LOADS of drugs - a carrier bag full, from morphine tablets to laxatives! I have been in a great deal of pain for the last month or so, and actually feel better now I am using painkillers properly (use them even when NOT in pain), although I am very tired. Next Wednesday I am having my hair cut short and spiky and dyed bright purple (like the bcc purple!). As I’m going to lose it again, I’m going to have some fun first!
Nicky, hope you enjoyed your time away from medical scrutiny and I hope it lasts a long long time for you xx