After reading that some of you have now been diagnosed with secondaries, I wondered if any of you had tried our Secondary Live Chat service which runs each Tuesday evening between 8.30pm and 9.30pm, the session is hosted by a nurse and facilitated by a moderator. The forum users that come on to secondary live chat are a wonderful support to one another, having the knowledge and understanding of what having a secondary diagnosis entails. If there's anything you need to ask about treatments etc then the nurse is at hand to help here. I've put you the link below to have a look at. It would be good to see you there, it's just one of the services BCC provide to help support you through this.
Hi all...I wanted to respond to the question about oral or IV chemo next......Just to tell you my situation first! I was diagnosed with primary BC when I was 45 in 2005. After lumpectomy, chemo(no taxol at that time cos I didnt have node involvement)and radiotherapy....which knocked me into menopause....I went onto anastrozole with regular bloods to continue to check my menopause status. I developed secondary BC in feb 2011 and switched hormonal treatment to exsemestane. I was never absolutely convinced it was working but my markers were stable as were the first couple of scans and then there was some slow progression and my onc decided it was time to change treatments. According to NICE this would have been to an IV chemotherapy......capecitabine is listed as a second line chemotherapy in secondary BC........but there is a balance between risk and benefits...as well as level of fitness etc....I think some oncs come down on the side of IV treatment whilst well enough to have it.....others think oral treatment with less side effects whilst well enough to do more is best. On top of that is the patient view.....and different people respond differently to different drugs.......A complicated mix!! But if you feel strongly enough about one or the other then make your feelings known.....certainly a number of ladies have had benefit from capecitabine...often for quite long periods of time.(including me!)
Hi Helen, I had double whammy disgnosis nearly 3 years ago of primary and widescale bone mets. I was lucky letrozole kept me stable for over 2 years then before chemo I was put on EE combination but this did not work very well so I have just in the last month started chemo. My oncologist recommended IV (which was my worst nightmare - I hate hospitals / needles etc). But he wanted to try and hit it hard whilst I was still relatively strong and keep the tablets for a later date were his words. Having said that it was my finaly decision but I trust my oncologist and have gone the IV route having had a port fitted in my arm to get over my phobia with needles as much as I can. I am finding it difficult but if it works and gives me a period of time back on a hormonial / hercepin then I am sure it will be worth it. I do hope that letrozole works for you but if you do have to go onto chemo I am sure the ultimate choice is yours. With love xx
Hi Helen, just seen your post about your onc. He doesn't seem very caring at all. Have you ever thought of changing to another one? Mine explains everything to me and spends time with me if I need it. I think you need someone you can have faith in. Take care, love Sheila. Xx
And I can add to the good news. I have been on capecitabine for 2 years and 4 weeks. A repeat MRI scan on my back last week shows no progression since Feb 2012.....long may it continue! Pamx
I didn't see your post before so I thought I'd give a quick reply. There is a lot of info on this thread about the different side effects so it's worth a read. The main one does seem to be the peeling feet and hands although this is different for everyone. I'm only just, after 12 months, getting a few cracks on my heels but try to use a urea rich (25%) foot cream. I also need hand cream but I get dry hands anyway in the winter. Some of us seem to suffer more with this side effect than others. I have noticed my hair thinning though. At first I did notice more coming out than usual then I suppose I got used to it. However, just after Christmas it was coming out so much I posted a question on here. It does seem to have calmed down a bit now but I have changed to a treatment shampoo/conditioner called Nioxin which helps with thinning hair.
Hope you are getting on OK with Capecitabine and do come back to ask any more questions you may have.
When I was on IV chemo 6 years ago my wbc and neuts were really badly hit, almost every cycle, and I had to have the injections to boost them. After 12 months on Capecitabine I still haven't had a 'low' month with these counts so it hasn't been a problem. It could be that a dose reduction may be needed, a lot of us seem to have this if any side effects happen. The oncs like to keep you on it as long as possible so will get the dose right to make this happen. Since my 1st cycle I have been on 80% dosage which is still working well. I would be a bit careful though if you know your neuts are down at the moment, I've just been hit by a sickness bug for the second time in six months and I'm sure this will be because my immune system is compromised at the moment. I also have had, for various reasons, a few breaks inbetween cycles and I'm sure this does help get the blood counts back up again. Good luck though with the Cape, hope it works wonders
I have been on capecitabine for very nearly 2 years. I use flexitol heel balm (you can get it over the counter but it can also been prescribed) It is a high urea containing cream. I mainly use it overnight with clingfilm or with cotton socks. During the day I use udderley cream. I also use the body shop hand and nail cream which I find very good for my hands. I still run into problems however and for the last six months or so i have been taking 2000mgs bd for 4 cycles and then having a cycle off to let my hands and feet recover.....this time I have actually had 4 weeks off but plan to restart on weds.....so far it has continued to work.....best wishes Pamx
Lots of ladies on cape use Udderly cream ( you can get it from Amazon) and have good results, I have not really had any problems but have been puting cream on my feet since starting cape and am now on cycle 9. I have been using eucerin cream (they sell it in boots), I was adviced to use something with erea in it. I put a liberal layer of cream on the bottom of my feet and then put on cotton socks, helps with the absorption and also stops coating the bedding with cream. Another lady posted she ehad used boots own E45 and found it helped.
Sorry to hear that things are not looking their best for you. The steroids will help reduce the swelling. hope the onc comes up with some answers for you. I am sure she will not mind me mentioning her - Nanniespikey has recently gone through treatment for brain mets, she is doing well - it may be worth looking at some of her posts etc. once you are clear about what is going on.
As Nicky said - get in touch with your BCN or onc. I am on 1800mg twice daily and visual problems are not one of the SEs I am experiencing and looking at the blurb this is not a noted SE. At the risk of being a total downer and worrying you unecessarily this could potentially be brain symptoms. Hope it is the the Capecitabine - however if it is anything else the sooner picked up and dealt with the better.
Do let us know how things go
I started on capecitabane in December with 2000mg a day (2 tablets on a morning and 2 on a night) everything has been fine until Friday. My dosage was increased on Wedndesday to 3000mg a day, since Friday I seem to have developed double vision. I'm not sure if this is the capecitabine or if things are progressing again (diagnosed with spread to menegies in October). Any advice woud be appreciated. Joanne
Hi there desi-2 as far as I understand hormone therapy is stopped once you start chemo. I was offered either Capecitabine or IV chemo and opted immediately or the Cape as I knew I would need a line for IV. However I did as the onc which woud work the best he said he couldn't be sure so maybe best to go for the easiest option first. I is definitely worth having a proper discussion about your options.
hoping you get the right treatment and it all goes well - Jacqui
Hi I am on cycle 3 and have really noticed hair coming out. otherwise very little side effects. Hopefully this will stop as time goes on. I also have trouble sleeping although desperately tired - any advice? Hands and feet ok but getting through cream like you wouldn't believe. Wishing you all a good dry weekend. Chris x
Good luck to everyone either already on this chemo or about to start it. I've been on it since Feb last year and have had very little side effects other than sore hands (which have only just started) and a very dry area on one of my feet. I do use a high urea content cream on my feet and also the healing plasters you can buy do seem to help. Top tip, go to somewhere like Wilko to get them cheaper than the main chemists who charge a fortune!
One quick question: has anyone had a lot of hair loss on Xeloda? I noticed I was losing some pretty much as soon as I started Xeloda however it has become more noticeable recently. I know it is listed as a SE but had hoped to keep my barnet this time around At this rate I'll be bald in no time
I have been on capedcitabine since August and apart from odd bouts of nausea I have not really had any se's.Sbrillyjack I did have the aches you are describing when I was on letrozole and my onc told me to take glucoscamine daily. Takes a while to kick in but it did help. I have just started taking it again as I am suffering with arthritis pain in my hands,hip, knee and in fact anything that has a joint! Hope things get better for you, i am due a scan next cycle to see how things are going, tumour markers have been falling steadily so very hopeful. xx
Hi Clove4rock, I'm not in Scotland but wishing you all the best in your fight for Capecitabine for as long as it works for you. I really hope you win. I had nearly 4 and a half years of Capecitabine which has helped me live ten years with secondaries. I had tablets for 14 days and then one week off. My bloods were fine throughout. I am worth the cost of my chemo and, more importantly, so are you. x
Hi Chris, I have reliable TM's and was on Capecitabine for four and a half years but I think it took 3 cycles before my markers started to decline. I would be quite surprised if you would see any difference just yet. My experience was Capecitabine being chemo in tablet form it's slower to show results than an IV chemo.
My tumour markers went steadily downwards over the 2 years I was on capecitabine (I asked to stop almost a year ago because of side effects), reaching a level that was very encouraging for me. I have liver and bone mets. I've been on different treatments in 2013 but I hope to go back on cape some day - oncs are not keen at the moment.