I don’t post very often, but pop in and have a look every now and again. I haven’t for a while and it all looks different.
At Christmas time when I was first diagnosed with bone secondaries I was reassured by many ladies here who had been living with bone mets for a number of years, but still a bit unnerved. I have been having capecitebine and ibondronate since Jan and had the results of my mid-treatment scan and the soft tissue tumour has gone and the bone hole is closing up. I was in a lot of pain a few months ago, but now have almost none.
I know this isn’t a cure, but just wanted to pass on positive news for anyne embarking on the secondary journey.
Just want to say congratulationss on your results and what fanastic news for you. It’s always good to hear positive story of other ladies and as you say great for newly dx people too.
I don’t have bones mets but I’m also on Cap for my lung mets and its keeping everything stable apart from the se life is ticking along nicely.
Good luck for the future and I hope it continues to work for you for many years to come.
Great news…well done, you!!
I have also recently started capcitibine and ibondeonate for lung, brain and bones mets. My first scan showed great improvement so I am hoping this will continue!!
Fiona
Hi from another member of the club!
18 months on capecitabine, which brought my liver mets under control after Taxol had done nothing;
and ibandronate (was Bondronat, now generic) for bone mets, now been taking the tablets for 4 and-a-half years.
I’m thankful for drugs that work so well for me, and VERY thankful to those patients who took part in clinical trials to develop these treatments.
GREAT NEWS JACQUI, I HAVE JUST FINISHED ROUND 8 OF CAPECITABINE BUT THIS IS THE 3RD TIME I HAVE BEEN ON THIS CHEMO AS HAVE BEEN ON IT TWICE BEFORE WITH GAPS OF OVER 2 YEARS SINCE I WAS ON IT LAST.
UNFORTUNATELY I AM NOW WAITING TO HAVE A COMPLETE HIP REPLACEMENT AS THE PIN THEY INSERTED LAST YEAR HAS FRACURED SO ALL THAT HARD WORK GETTING BACK TO NORMAL HAS BEEN HALTED ONLY TO HAVE TO DO IT ALL OVER AGAIN…I MAY BE ABLE TO HAVE OP THIS FRIDAY IF MY ONCOLOGIST THINKS MY BLOODS ARE OKAY AS FINISHED PILLS ON TUESDAY. YIKES…SEEMS AWFULLY CLOSE AND STILL DO NOT KNOW FOR DEFINITE YET.
GOOD TO READ A POSITIVE POST FROM YOU. LONG MAY IT CONTINUE TO DO ITS JOB FOR YOU. VAL
Hi everyone, I read through your post this evening,I start on Capecitabine this thursday,to try to sort out my lungs,I have been feeling a bit apprehensive,but reading your post has given me a little more confidence, thankyou Ozzie
Hi what a wonderful discussion . I have just started xeloda tablets (cap) just getting to day 10 of first cycle it’s great to see hat aloyou love lovely ladies have had success x
I am on my 54,I think cycle of cap. Combined with Ibandronic acid 50mg per day and 74 Herceptin I am here for my two lovely boys aged 16and 13.
They are the reason I keep fighting. it’s been five years of constant treatment but I am still here.
i am tired but gave up a job I loved as I could not manage it all…
i feel over Time I have come to see true friends. They are not the people I thought they would be. I think people look at me and think I am fine. A few have stayed loyal been there at scan results time and whenI feel at rock bottom.
Hi everyone
I don’t post often but I follow posts daily
Just wanted to share some good news, I started cape in May for some small liver mets, I have had 5 cycles and yesterday got my scan results reported no mets to be seen in liver.
Whoop whoop I am enjoying this good news while it lasts
I am praying all of us xeloda girls have good results
Mandy xxx
I am a Xelloda girl too for bone and liver mets.Had first 6 cycles with some good response so the plan is to continue… I pray and I fight every day. It is great to see other people stories and feel less lonely in this togh journey. Good luck to everyone! Keep positive girls. x
Hi all , I have just joined this forum hoping for some pointers as to what route to take in treament, have lung mets and finished navelbine in November but latest scan showing further tumour growth in lungs, offered capecitabine this week but found it hard to make a decision there and then and decided to hold off as oncologist hinted that one more lot of chemo would be all he could offer and trying to digest that thought led me to think that the longer i held off i would still have one last option left , but having read all your positive results and progress have decided to phone my oncologist on Monday and get started, how long can you stay on this treatment.
Kath
Hi kath , I did taxol then the tablets , now on another chemo. Why did your onc sato you could only have 3 ??? I have never heard of thWhat what is your story ? X
Some people can stay on cap for years some just a few months .
louise
Thanks Louise
my B.C Journey! was first diagnosed in 2008, had wide lumpectomy, FEC chemo and radiotherapy followed by a year of Herceptin as HER2 positive,everything fine until July 2011 when got chest infection and x ray showed spread to both lungs, had 6 cycles of Docetaxyl combined with Herceptin, continued Herceptin until scan 3 monts post chemo showed further growth of tumours, Herceptin stopped as consultant said I had built up resistance to it, 6 courses of oral chemo–Navelbine completed in November and hear we are with last scan in feb showing further growth of tumours in both lungs, no spread outside lungs , only option consultant is offering is oral capecitabine 3options of when to start , (1) either I start it now , (2) wait until symptoms get worse (3) wait until next scan in 3 months, he hinted that this would be the last chemo he could offer me hence my dilemma as to whether to go for it now and hopefully halt it or wait and try to halt it further down the line,
I feel by giving me options he has not made it easy for me to decide.
kath
Hi kath , your story is very similar to mine 2008 lumpectomy Fec and radiation. But I am not herceptin positive but so was er plus, so I went on tamoxifen. I had a reoccurence in my armpit auxilla and they did ct scan and found lung mets. I have no symptoms. So don’t know whether lung mets are from the first of second tumour. I did well on cap pills initially but did about 4 rounds before I was changed on to something else. There are about ten things I think to try. Anyone could put yobefore evidence of decease fir a period of time. There are people on here that have been on cap tablets for years, also because you are her plus there other new drugs, I cannot believe your oncologist has said that to you.
Louise
Kath i can’t help re your treatment as it is one i have not been on,although i know ladies who have done well on it.I would however suggest it might be a good idea to ask for a second opinion.If your onc has run out of options then maybe another onc/hospital could offer you an alternative,or they may well confirm what you are being told…even if that is the case you will at least be able to make an informed decision.Personally i would not be able to just accept what you are being told.I went to the Royal Marsden for a second opinion and am currently taking a drug that has recently completed trials but is not available without funding from the drugs fund. If you are happy with where you are being treated why not just ask to see another onc.
Good luck and keep us posted.
Hi Kath
i was on Herceptin for 3 and half year for bone mets then I had progression to the lung (lymphanghitis). Herceptin was stopped and I had 8 cycles of capecitabine and Lapatinib then continued on Lapatinib alone for a further year. Recent scan showed progression so Lapatinib was stopped and I chose to go back on Capecitabine as I had stuff good results from it last timewill just finished my first 2 weeks and will continue on it until it stops working. My friend (the Xeloda Queen) was on cape 8 years, I know that is unusual but some people do get years out of it- that’s what I’m hoping for then maybe the new drug (forgot the name) might be available to us Her pos.
Best wishes
Sue x