Really good to see you back Carolyn. Glad cape is working for you.
Bon xx
How lovely to see you back on the forum, Carolyn, you have been missed - a lot! So pleased you are getting good results for Cape as well, I do hope you managed to celebrate.
Nicky xx
ps I was about to PM you anyway but saw you had been on here already so that was a lovely surprise xx
Hi Graceland girl .I've just joined the group and was interested in the fact that you've just started cape treatment. I finished 5 cycles on it about 8 weeks ago and though I was really ill after the first one (dose needed lowered) after that I stayed well. Did buy into taking special honey to prevent nausea though. My sister had heard about it on breakfast tv. I've never coped well with the prescribed anti-sickness meds and the honey really worked for me. I'm seeing my oncologist next week to see what effect the treatment has had and I'm keeping very positive about it. Diagnosed with my secondaries March this year 5 years exactly after my initial cancer. The battle continues!!!!
Welcome though sorry you find yourself here. What a fab attitude you have especially in light of unwelcome prognosis from idiot onc,
Take care, wishing you a long time on cape.
xxx
I haven't used this forum before, so I hope Im using it correctly. I had intravenoue chemo for about 12 months but was taken off it due to my blood not recovering. I went on to tamoxifen but the TMs and scan showed it was no longer working, so I'm on Cap now. I'm on my 2nd cycle on max dose of 2300 x 2 daily. I don't feel too bad, just lacking energy and the sole of my foot feels very tender. Its very comforting reading other posts as I don't feel so alone in coping with incurable cancer. The saying "Living with Cancer" rather than "Dying from Cancer" is something that I think about every day. I don't think this disease has stopped me from doing anything I would normally do...except I dont do so much housework ! But I still enjoy cooking and eating, although I dont seem to be able to eat as much as I used to ! My original breast cancer was diagnosed in 2011 and I had a lumpectomy and radiotherapy. Although I continued to have mamagrams that were always ok, in 2016 after a visit to my GP she discovered lump under my arm and after tests it was shown to have spread to my liver and was inoperable. The surgeon was very offhand when he gave me my diagnosis...with a shrug of his shoulders he said I had 2 to 4 years survival. That stayed in my mind and all I kept thinking was there was no point in buying new clothes or planning for anything as I probably wouldn't be around. I have since been told that I shouldn't have been given a time limit as no one knows and everyone is different....so now I've started buying again !
Hello again - glad u had a good trip George, I’ve been to Galway twice and it poured with rain both times. We found good places to eat both times and had lovely evenings though.
I started my cape three weeks ago and have just started my second cycle- the first one seemed to go okay, not much in the way of SEs. Saw the Onc on Friday for my second cycle and he said that the bloods I had done showed low white blood platelets, he asked me if I would be willing to wait around at the hospital whilst they repeated the test, which I did and they had gone up enough so he gave me my second prescription.
Also gave me my scan result which was a bit daunting, it appears that the bone mets in my spine have infiltrated the bone marrow, which could be why the platelets were low, also the peritoneal mets are more apparant. However he did say that this scan is a baseline to see how the cape affects things...I had it just as I was starting my first cycle and had not had any treatment for 6 - 7 weeks. I was on Zomera and Letrozole for almost five years which reduced my TMs and also kept them stable. Since then have tried E and E which had no effect. Pacitaxetol which kept me stable for the 16 weeks duration but when I stopped my TMs increased dramatically- also tried Tamoxifen but the side effects were awful so I had to stop it.
Yesterday morning I had awful diarrhoea but after taking a couple of imodium it has been okay since. My eyes are a little sore, red and dry, but I understand that can be a SE as well. Really hoping that I can get some stability with Cape
love to all, hope you’re all as well as you can be.
xx
Hey George! Sympathise with the weight gain! I'm up 16 kgs since going on Xeloda but am told it's my sweet tooth, too, that is the cause! Stay well and I will keep in touch. x
Hey George, how are you? I live in Australia so maybe the funding is different for ribo. We did have to get a special authority to get it. Glad u have heard good things about ribo - not much to read out there as it is quite new. Xeloda worked very well for me for a long time - TM going up slightly after 18 months of Xeloda keeping them at the same level - but not enough to alarm the onco at the time. It's the mets to the omentum that came this year that's prompted the intro of ribo. I'm now taking ribo with letrozole plus xeloda. Onco had originally said you usually have letrozole with ribo but not if u are on any oother chemo so not sure why he has said to also stay on xeloda. TM had increased at the visit 2 weeks ago (but had slowed down). This was xeloda and letrozole. We introduced ribo a week ago so in 8 weeks I will get an indication if it's doing anything. The sore feet and hands is a side effect of xeloda - I didn't get that - but keep moisturising as it helps. I asked the onco at the last visit if we could increase dosage of xeloda as I tolerated it so well. He said no because that brings on SE with hands and feet. I am taking 1500 mg of xeloda twice per day. What is your dosage? x
Hi JanieB, the complex world of breast cancer! I didn't have lobular bc to start with - it has always obeen oestrogen receptive. When the mets came in the omentum earlier this year I asked my onco if it was a common area of spread (i.e. the omentum) he said no, but associated with lobular. This takes me back to a convo I had with another colleague here in Australia (I live in Aus but am British - been here 32 years) and she was very much into the science of bc - she had it herself. She explained that as bc metastasises the pathology can morph, meaning change. So I am assuming mine has gone from oestrogen receptive to also lobular. Capecitibaine (Xeloda) worked really well for me - 6 months of it gave me 18 months of stability. The rbiociclib (also known as Kisquale) is pretty new. I've just read another comment on here about funding in the UK - I needed special authority for it here in Aus - took a week - otherwise it's normally AUD $5,500 for a box ... The SE in the first few days meant fatigue but this week not too bad. I am taking it with Letrozole now. Up to this year I was on Cape and Tamoxifen. When the omentum got involved they changed the Tamox to Letrozole. I was told Letrozole is usually taken with Ribociclib but if you are on other chemo you can't take ribociclib. So not sure why 2 weeks ago the onco put me on the ribo with letrozole AND continuing on with Xeloda. At the last visit 2 weeks ago (before introduction of ribo) I was on Xeloda and letrozole and the markers had increased (but slowed down from the last test) so I think onco is hoping ribociclib will bring them down and keep the omentum stable. Hope you are doing ok, too! It's a hell of a journey, isn't it? x
History: 1997 first BC - Lumpectomy/Radiation, 2002 second BC mastectomies. All clear until 2016 - metastases in lung/bones - given Xeloda for 6 months (apart from a bit of Diarrohea wouldn't have known I was on anything). Brought markers right down. Then 18 good months before new metastases showed up in the omentum. Xeloda commenced again but hasn't brought the markers down. Now introduced Letrozole with Ribociclib (side effects of Ribo not great and feeling knocked around). Xeloda was really good - hardly any side effects. Was taking 1500 mg twice per day - no hand/feet issues - think this depends on the dosage.
Hello again everyone and thank you for your tips. I started Cape on Saturday 2000mg x twice daily. I thought that was a lot Onc said that he would start on a low dose but I am 5’ 9” tall so I expect that is why.
Very early days so no SEs but I am stocked up with udderly cream, non alcohol mouthwash and bought new oven gloves.
How are you Biker? Hope that the wheeze is not too bad now. You will have finished your first cycle now I think, I started a couple of weeks behind you.
Thanks for the tips on spacing the tablets Nicky, I do not like to eat dinner late because I have quite bad reflux, but I sometimes have late breakfast - not being a good sleeper if I lay awake I often lie in until 9.00ish. I am having a snack - biscuit or yogurt or crisps at about 7.00pm and taking my evening pills then. Seems that my days revolve around taking meds af the moment but I am sure it will all settle down.
good luck with your trial Janie,
xx
Hi lynq thank you your kind reply. I have developed a bit of a,dry cough and an annoying wheeze. Macmillan nurse at my local centre it's probably from the mets. So hoping this subsides when on cape a bit further on. Hoping cape agrees with you. Best wishes xx
Hi Lynn
I found when I was on Cape back in 2013 that it took my body a couple or so cycles to cope with it. I didn’t feel awful and didn’t have any nausea (which I was worried that I would have) but just not quite right. I also found, as some other ladies have in the past, that my first week off I actually had more SEs, notably the big D! All of these SEs became less of a problem as my body seemed to accept the nature of the drug ie a daily dose for 2 weeks then a week off rather than the blast from IV chemo. I did get the hand and foot syndrome but used a cream with a high urea content (25%) when it was bad. I also had a dose reduction of 20% pretty much straight away which helped with the SEs but was still effective for the 18 months I was on Cape. A lot of people stress about when to take the tablets but as long as each dose is not closer than 8 hours from the next or previous one you should be OK. I didn’t bother with getting them exactly 12 hours apart as it would have messed up my mealtimes and I wasn’t having that! Also, once I had settled into the routine of taking the tablets (there can be quite a lot of them each time depending on your dose which is calculated on weight x height) we did travel abroad as well as in the UK. We tended to go in my week off as it meant I didn’t have to pack quite so many tablets more than for any other reason.
Good luck and I hope you get a long run out of the peachy pills
Nicky x
Hi, my main SE was fatigue which built up over time gradually getting worse each cycle. When my dose was increased to 2000 I got chest pains but that resolved immediately when I dropped back down to 1500. I was lucky enough not to suffer from hand and feet issues though I do have regular chiropody and pedicure appoinments to keep on top of hard skin etc. Regarding foot cream, get the one with 10% urea. Keep on top of mouth issues by rinsing regularly with alcohol free mouthwash and drinking plenty of water.
Best of luck
Paula
Hello Biker
How are things going - still early days.
I am due to start cape on Friday, seeing Onc for consents etc and he says he will start me straight away.
I would be interested in when the SEs start as well but as you say we are all different. We were hoping to book a short break away somewhere in the UK but have put it on hold until I see how it affects me.
Udderly cream has has been recommended for sore hands and feet, I have looked on amazon but there seems to be so many different kinds- can anyone let me know which they used ?
I have not been having any treatment at all since the end of July - apart from about three weeks on Tamoxifen which gave me horrendous UTIs so had to stop it - and my TMs are rising significantly so am hoping for the best.
x
I have just started cape last week, not experienced side affects yet. A little nausea , maybe someone can tell me how long you are on it before side affects may start. I know we are all different, I am also on herceptin . I have lung mets , letrizol e was not working on mets, so that is why I am on cape.
I have just started cape last week, not experienced side affects yet. A little nausea , maybe someone can tell me how long you are on it before side affects may start. I know we are all different, I am also on herceptin . I have lung mets , letrizol e was not working on mets, so that is why I am on cape.
Hi Lynn, it’s often a good idea to start the moisturising before you start the tablets, if time allows you to. I’m sure you’ve read a lot of this thread but a quick thing to check is the urea content of any cream (when hands and feet get really bad). The higher the content the better it is to deal with it, I found Boots own cracked heel balm the best (it has a 10% urea content as opposed to Uddley’s 5%) but it is quite greasy so only used it at night on my feet. My fingers got splits in them rather than getting really sore and they hurt quite a bit. I found ‘healing’ type plasters worked the best - as did an extra week off the tablets or a dose reduction!
Glad you got the chance to have a long break in France and hope you get to book somewhere later in the year. I’ve made the most of this year not being on chemo (I’m currently on Fulvestrant ) as I have been on one type of chemo/IV treatment for the last 4 or so years. We’ve had a few more holidays and mini breaks and going off to Italy in a week or so for a last bit of sun. When I get back I’ll find out my latest scan results and the whole merry-go-round might start up again so we will be making the most of our week away!
Nicky x
ps Hi to all other Cape crusaders, I hope the chemo is bashing the little users but giving minimal side effects.
Thank you Nicky and George.
I have been warned about the blisters and sore hands and feet so am going to stock up on the recommended creams. I have quite dry skin anyway so I do tend to moisturise often.
Hopefully the mouth ulcers won’t appear again.
after our hectic three weeks in France we were hoping to do a sneaky week somewhere sunny and just relax before Christmas-just husband and I....
Fingers crossed
x
Hi Lynn
I remember years ago when the E/E combo was first being used in the UK that many of the ladies who started it had problems with mouth ulcers and these only improved when a dose reduction of the Everomilus part was made. My oncologist at the time had told me what a remarkable drug this was (he had worked on the research side of it before it became available on the NHS) and I said that he should read these forums as the SEs were pretty awful for most ladies!
Hopefully you won’t get any mouth ulcers on Cape, I didn’t when I was on it and there’s not many ladies on here who have reported them although obviously a few might get them. Again, any moons ago, ladies on Cape used to recount how they got blisters on their finger tips by handling the tablets but I (as did many others at the time) suspect that was more to do with the SEs of the chemo on the hands, which is a widely reported SE.
Good luck for the 21st and hope it works well for you.
Nicky x
ps Hi George, have a great trip to Valencia, haven’t been there myself but have heard it is a very pretty city. X
Thanks again for responding, I received a letter from hospital yesterday and I will be starting Cap on the 21 Sept.
After Letroxole stopped working I was on Everolimus\Exemestane for a couple of months - I had the most horrible mouth ulcers and I understand that Cap can cause these as well. Has anybody else suffered from these and do they eventually settle down, I am going to stock up with mouthwash etc.
George have a nice time in Valencia, we were in France for 3 weeks, had a fab time but It was very tiring, came home for a rest.
xx
Thanks Paula. The Onc did say that one of the SEs of Cape is diahrea and that he would want to monitor that because I do have IBS symptoms caused by the Peritoneal mets and have lost a lot of weight. I can see now that starting low and increasing is a good way to go for that reason.
glad to hea4 tha5 it worked for a while and that you are remaining stable at the moment.
Hi Lynn
I started this way round. Mainly because I had so many SE on FEC. I started on 800mg twice a day and increased monthly to 2000 then reduced back to 1500 as that was the bst balance of benefit against SE.
I had good results, some reduction and then stable for 20 months.
Unfortunately stopped working and am now on Pac which again is keeping me stable for now.
Best of luck with your treatment.
Paula
Hello everyone
I saw Oncologist today and we agreed to start cape.
I had 16 pacitaxitel which kept me stable but made no improvement . He put me on Tamoxifen but I had to stop it after a couple of weeks as I had such awful UTIs. Have had to have two lots of antibiotics and am still suffering a little but almost better now.
i have not had any treatment for four weeks as I was away on holiday, after Pacitaxitel my TMs were 272 but the reading from yesterdays bloods was 1235 so a vast increase.
I will start cap in approx 2 weeks, meanwhile he has ordered another scan as a starting point to monitor how cape works
I have read through a lot of the posts on this thread and he seems to be ordering things differently for me, he says that he will start me on a low dose and then increase if I tolerate it okay - seems to be the opposite for most others who start on a higher dose and then reduce??? Has Any else done it this way round ?
my cancer is lobular and the problem area seems to be in my peritoneal - with some bone mets in spine and pelvis. Hoping that there has been no further spread since last scan which was 3 months ago.
onc has always said that TMs are a good indicator for me so I am still reeling from the massive increase.
was on letrozole for almost five years with very few side effects but nothing seems to have worked since last year when TMs started to rise because of peritoneal
sorry feeling a bit bit down but will pick myself up tomorrow
xx
Hello
has anyone had raised liver enzymes while on Capecitabine? My liver function had been good for the last three years but has suddenly jumped over the last cycle. Been on Cape nearly a year now. I'm worried
the c has spread to the liver. Onc seemed puzzled and concerned and has ordered an urgent scan. Can't believe I didn't ask if it could be due to spread of cancer!
Hope you are all doing great
Janie xxx
Thanks for your reply Judith. Good luck with wokring out the retirement.