I was diagnosed with liver mets in August 2010 and started taking Capecitabine. The effect was immediate and in october of last year the ultrasound scan showed all the timings had gone. However, it seems to have come back in the past few weeks. I had a scan yesterday, which the doctor who performed it declined to discuss with me, but she was busy measuring all over the place so I fear not only have the timings come back but may be spreading. I am HER2+ but am severely allergic to Herceptin. We tried it last year and the two consultants who looked after me said they had never seen such a bad reaction and that it would probably kill me to try it again.
Do any of you ladies have experience of Capecitabine stopping working? Is there anything else that can be tried to prolong life? I am 45 and have a 5 year old son and it breaks my heart what this is doing to him and how he and his father will cope when I die.
Thanks for reading this, and hope someone can share their experiences with me to give me some idea of what I have to say to my oncologist this afternoon.
I know waiting for the next option is horrible. I tried cabecitobine 2 years ago for lung mets, but it didn’t work at all. I was switched to Abraxane, which kept everything stable for a good while, as did exemestane. I’m sure there will be something else to try. I am in the middle of navelbine, and my onc has also mentioned lapatanib as an option, as I am her2 pos. Would that be worth asking about? My son is 6,so I know the pain you are going through. Sending you much love.
nicky
Thanks, Nicky. I’ve heard of those drugs, so it’s good to hear they can work. I will at least have a couple of names to suggest. Navelbine is the trade name of Vinorelbine, isn’t it?
Hi Cat, I have also had a disappointing result on Capecitabine. Worked great for the first 3 months, then stopped working completely this time round. I am seeing a new onc tomorrow about parp inhibitor trials but I think the criteria is quite strict, it’s largely for BRCA1, triple neg patients. I don’t know if that’s you? I have also read that carboplatin is working very well but I couldn’t tell you which type of cancer this is for.
Don’t give up yet, there is still lots they can do I’m sure. I wads told it was disappointing to not get a good result on Cap and i had hoped to be one of those women who stayed on for years at a time, but that’s just the first defence. I have hope! Good luck and lots of love to you xxx
Hi Cat, I had a good response to Capecitabine but I too will be changing chemo soon. Looking at your profile it would seem there are still lots of treatment options for you to try.
Good Luck…x
Capecitabine didnt work for me either, I was on it for about 6 months or so. I then started back on chemo - paclitaxol - last September - had it weekly for 18 weeks apart from bank hols over christmas. Due another scan monday but the last one in December showed great shrinkage. I am HER+ but am also on herceptin, been on it since Dec 07, and although doesnt work 100% for me anymore, they keep me on it. I have a 4 year old son and 7 year old daughter and know the pain you are feeling thinking about the what ifs and whens.
My onc is also planning on either lapatinab and vironolbine (spelt wrong I know), as my next options see her on 9th March.
My onc tells me there are loads still to try so am trusting her. There is also a trial called TDM1 - some ladies on here have started it.
I hope you got some answers as think this msg is after seeing your onc.
Thank you everyone for sharing experiences with me, it makes me feel less isolated.
My oncologist was very sweet and spent hours with me on Wednesday going through options. I start Vinorelbine on Monday and he is applying for funding for Lapatinib. Fingers crossed something works for q while, am sick of being in pain.
Delighted to hear that you had a good session with your oncologist on Wednesday, and now have a new treatment plan in place. I have no experience of Vinoralbine or Lapatinib (yet), but hope they work well for you.
