How awful, my heart really goes out to you. I am sending positive vibes your way, I truly hope you have many more Christmas dinners to come.
Take it easy xx
Thanks for your commets ladies. i have alrady had a second opinion as i lost all confidence in curent team after my 6th month delay due to misdiagosis.The second onc basically agreed that my treatment plan was correct. I have now had copy of my gp letter and although he has said he is still against stayingon cap everything will be reviewed when i have had scans etc at end of this round of treatment. For the lady that askes (sorry cant see your name now and chemo brain has kicked in!!) i live in leics and am being treated i staffs. x
hi .....CW17...I would agree with second opinion......I have bone mets (diagnosed nearly 4 years ago when I was 51 after primary diagnosis aged 45)...after one year on hormone treatment I started Capecitabine in Feb 2012 and have been on it since with stable scans and markers....I have had a few breaks varying between 1week and 3 weeks but restarted it each time before markers have changed.......different oncs, different treatmentsand different plans!...........your second opinion should be with an onc who meets within a different MDT...otherwisw essentially the same opinion!xx
CW, maybe you could seek a 2nd opinion?? Your onc seems out of touch if I might say so...
A break from capecitabine is indeed possible, I speak from experience. I had 2 years - bone and liver mets stable, tumour markers below 100 (which, for me, is good) I asked to stop because of SEs, my skin is quite sensitive to chemo and I had had enough of hand-foot problems. My onc told me that the longer the break before re-starting cape, the more likely it is to work 2nd time around. After 3 other treatments - tamoxifen (which didn't work for me), eribulin IV chemo, and letrozole (also 2nd time around) I re-started cape in July 2014 at same dose as before. Liver function results have improved so it seems to be working again
Hope this helps.
Thanks ladies..saw my onc yesterday and mentioned it again: he was adamant i cant sty on it after 6 cycles. He said he has never prescribed it for anyone longer than 10 cycles. The nurse in with him did join in by saying "but you can have a break from cape and then start it again" but he 'shouted her down'. He seemed to think radiotherapy and letrozole would be enough. This worries me as i've already been on arimidex and aromasin and they clearly didnt work!! i really do feel that, even if this treatment does work, i will then be let until it rears its head again by which time it would be too late??
CW, I had 5 years out of vinorelbine and 2 years out of cap! Also was friends with Marilf who was the queen if cap! Good luck! Funnyface
Hi so sorry to hear your news...if its any consolation i had the injections during my fec treatment 3 years ago..i did them myself and was fine. i am now on dotaxol..coming up tp my 6th and last one and although i feel really poorly for the first week i dont think its as bad as fec. Because i was so sick on fec my onc prescribed Aprepitant from the beginning of this round of treatment. I'm also on cape and have been told i can only have 10 cycles...my chemo nurse thought i was bomkers when i told her i'd rad about people being on it for years. Its really scary not knowing if these treatments are working isnt it. Sty srong..i'm sure you will be ok with dotaxol. x
Bev, I just came on and saw all the supportive posts to you. I'm sorry that you didn't get a very good response to your chemo. I will refresh you, I have lung mets too and xeloda just failed me too. I started gemcitibine today. What I wanted to tell you was that back in 2012 my right lung collapsed, I did radiation and got pneumonitis from radiation and put my heart and lungs in a spin. I landed in the hospital and came home on O2. They said my lung would most likely not reinflate, well it did! One year later after this my oncologist told me I had been in really bad shape back then and my life had been in jeopardy. I only tell you all this to give you hope and put the fight back in you!! You can do this! I'm hoping this chemo kicks a$$! I haven't had that drug yet, so I have no advice! Hugs FF
Bev, just came on and saw your post.
I'm so sorry cape didn't work but as the other ladies have said there will be another treatment that will work for you.
I can't add much that hasn't already been said but wanted to say that I am thinking of you and hope that your new treatment kicks the uggers into touch.
Hi Bev, so sorry to hear your bad news and I know what a blow this must be for you and your family but I'm glad they are moving you onto another chemo that should be harder hitting on the little uggers. I'm currently on docetaxol (with Herceptin and Perjeta) and just had my 4th cycle last week. It's doable, probably more so than FEC which I had 6 years ago and certainly no sickness or nausea. On FEC I needed the GCSF (?) injections as I was so low for neuts and wbc but this time around they are both very high so I've not needed them, and this was after going straight from Cape onto Docetaxal so they hadn't had much time to recover. Wishing you all the best but do ask any questions about the chemo and its SEs, I'm well versed in it all now! BTW you will lose your hair so think about getting organised with a wig or headcoverings, at least they keep your head warm in this freezing weather! Take care
Bev Im so sorry to hear your news but please dont think this will be your last Christmas - as everybody has said there are lots of other treatments to try and new ones coming on stream all the time. I had docetaxol in March to June this year and was dreading it. It was the first chemo that I had had as I had a double whammy diagnosis three years ago which until then had been controlled by hormone treatments. The first dose was horrible - the main side effect for me being tiredness and headaches initially. I also had the injection to boost white blood cells which did make me ache. But after the first dose the others got easier, I think my body was more used to it and the breathlessness that I had had before I started went after the second dose. The scan at the end showed a really good response. So I will keep everything crossed that you have a similar experience.xx
Bev, so very sorry to hear your news.
I can only echo what the others have said & hope that the next chemo gives good results.
A big hug,
Bev - so sorry you've had rubbish news... may I echo Belinda's comment, some chemos don't work for some people. I think many people whose mets didn't respond to Cape do well on docetaxel, and definitely vice versa (my oncs wouldn't give me docetaxel).
Do allow yourself to accept help (where appropriate) over Christmas etc.
((hug)) if I may.
Bev - I'm really sorry to hear your news as well. No wonder you feel desolate and like crying. The only thing I can say is that I found Docetaxel much easier than FEC. I had the blood cell boosters too. I was able to be much more active on Docetaxel and I didn't have any nausea or vomiting with it, unlike FEC. My mother gave me the first injection but after than I did them myself - you just pinch the skin on your tummy and the needle is really quite painless. I would suggest you get the District Nurse to do it for you first to show you what to do as the instruction leaflet doesn't make it clear exactly what to do.
Wait to see how you get on with it as we all react differently. I was told my latest chemo wouldn't make me sick or make my hair fall out - but it's done both. Also, just because one treatment doesn't work for you doesn't mean this one won't.
Warm wishes and hugs.