Breast Cancer Now Forum

Hi Timmycat I was on Cape for over three years. It took a while to find the right dose as to start with a was on the highest dose. Over the first few months they reduced it and then change it from two weeks on two weeks off. The main side effect was tiredness. I also lost my appetite but overall it is much less of a hassle that the IV that I am now on and the side effects were tolerable. After being on it for a year they gave me two cycles at time to take home so I only had to go to the hospital every 8 weeks. If you do decide to go down this route and suffer side effects to start with make sure you ask you drs if they can reduce the dose. I hope this helps you make your decision. Hugs Sarah    ... View more

Hi Sharon I was on Cape for nearly 4 years and did not take a hormone blocker with it. It worked really well and the only side effect I had was tiredness. Hope you do well on it. Best wishes Sarah ... View more

HI Angie I can't really help as regards your situation. Hopefully you will get someone who can help soon. Just to say I am thinking of you. I was on  Letrozole and Palbociclib, for about 18 months and they shrunk my tumour really well, so hopefully this will help. Hugs Sarah ... View more

HI Debs I am at the Royal Marsden in Sutton. Not sure what the study is called as I am just at the pre screening stage but I think it is for a drug called Tucatinib. Don't really know much about the study as I was already a bit overwhelmed when they suggested it as I had just heard my mets had spread. As it just involved a blood test at this stage I did not feel like I needed to know much more. Still don't understand how my HER2 status could change but just have to see. If it offers me more treatments, so much the better. Although I did say on JUST involved blood tests, it did take they 2 hours to find a vein!! Good luck with your treatment. Sarah x ... View more

Thanks for your reply. I had seen these two posts but they are quite old and I just wondered if there was anyone on the site now taking it.  ... View more

It is when the tumor spreads from the breast to the bones. People can get mets in all different parts of the body, ie lungs, liver, skin. Hope this helps you ... View more

Thanks Riversidedawn for your post.   My problem is not seeing the same doctor, which I quite accept will not happen, but scan results not being followed up, so my treatment was delayed by 4 months. Also no one seems to communicate. At my last appointment the consultant said I would not need another blood test, yet 2 days later the chemo suite ring me to say I have to come in and have one.    these are not one off things but happen at nearly every appointment. I have the sectratarey ringing me to ask what is happening about the appointments becasue one dr is saying to her I don't need one and the other is saying I do.    As you can tell I am very frustrated.  ... View more

Never had it before myself but I know that is why they always insist on a recent blood test to check your renal funtion before they give the dye as it leaves the body via the kidneys.   Hope you get it sorted. I doubt it is anything to worry about. On the next blood test it will probally all be fine.  ... View more

Thanks for your reply Judith. Good luck with wokring out the retirement.  ... View more

Just bumping this up as I would love to hear from anyone who changed consultants and know how easy it was. I am going to see the GP on Friday and would like to have some info at hand. thanks very much  ... View more

Thanks Tatyana. Makes me feel a bit better. I am on the fouth type of nausea pill. None of them seem to make any difference.  ... View more

Thanks very much. Never mind waiting if I know the treatment is good.  ... View more

HI I have just finsihed my first cycle of Capecitabine. I have never felt so awful. I think I had all the side effects listed but the worst was the nausea and exptream tiredness. It was all I could do to go from bed to sofa. Now having had a few days off I am starting to get energy but I can't walk due to the massive fluid blisters.   My consultant has reduced the does by 20% but I am not confident that this will make enought difference.    Has anyone experienced similar.   Thanks Sarah ... View more