Hi Milly, I'm not medical but have had lots of different treatments both for primary and secondary BC. My experience of Xeloda was really good, it worked for me for 2 1/2 years and all I got was the hand/foot syndrome. No hair loss at all. Every patient gets a dose of tablets based on your weight and this can be adjusted if your side effects are too severe. My hospital had a regime of 1 week on/1 off so SEs were very manageable.
If you read through this post everyone's symptoms vary but for me it was SO much easier than IV chemo!! I was gutted to come off it! Good luck whatever you decide xx
Hi I've been told I need further chemo following taxotere and a mastectomy as my tumour was grade 3, aggressive and triple negative. I don't know for sure but I've been told chemo will be in tablet form so I'm guessing it will be Xeloda.
I am undecided as to whether to accept this treatment. I have no lymph node involvement and no evidence that it has spread so I am reluctant to go through further chemo to mop up cells that may not even be there.
I am am wondering what side effects I can expect. I didn't suffer too much on tax so am hoping this might indicate I would be the same on Xeloda.
To to be honest, my main concern is hair loss. I found this extremely difficult to deal with and now my hair is starting to grow back, I am reluctant to lose it again, or even slow its growth. For me, this would be reason enough not to go ahead. I know this is stupid and I wish I was strong enough to deal with it but I don't think I am.
Hello George, no, I don't mind you asking. I have a couple in my womb, which is how I discovered I had mets - I started bleeding again, after a good few years of the menopause. I went straight to my GP, and she was very good - I had investigations at the hospital within a few days.
I now also have mets in the lymph nodes under my left arms, and also now multiple minute bone mets in hips, spine and left ribs. They are so small though, that they can't even show me on my CT scan as it takes an expert to spot them - which is good, I suppose. In fact, I found out yesterday at my Onc appointment that that is why my Onc has my TM results - as a way of assessing my progress, either way.
Hi Annemay, yes, re tumour markers....its wierd because mine does test for them and did whilst I was on cape, I have bone mets and liver mets. Not sure why other oncs dont se thrm!
My guess is that oncs being doctors have their own little preferences...the tms take a while to do, so they. May be expensive!
when i read that a few ladies were told that te onc doesnt use them for bone mets..I asked MY onc..he said 'well, we know 'your' cancer growth/activity Does get reflected in the tms. Maybe its the type of cancer? Mine is lobular and Oestrogen positive.
Thanks George that is really helpful and seems more manageable. Good to hear that your tumour markers are falling and that Cape is working for you. My oncologist does not seem to measure them, not sure why.
Hope that you have a good weekend as well. Ann
Sorry to hear about your sore fingers as you remember mine got quite bad and while i was in France I was useing a hand cream a retired nurse gave me. It is like going back to your old remedy vaseline although it was petroleum jelly it is called Creamy petroleum jelly with vitamin E by Cotton Tree it did wonders for my hands so I have bought more off Amazon. I tried Udderley Eucerin Boots number 7 and other expensive hand creams all didn't help this was not expensive.
I am glad you are still doing well and i hope the reduction will help you.
Love and ((((hugs)))) xxx
Hello Anneemay, George beat me to it! If it's any help, I really don't like breakfast, and when not on the pills, I don't eat it. When I take my pills in the morning, I usually just go with a Sainsburys small rice pudding, or one of their chocolate muffins. I find that plenty - just enough to get my digestive tract moving! However, if you are still having problems with nausea and sickness, it might be best to eat a little more. I think it will probably be a case of just experimenting as seeing what works.
Hope this has helped a little.
Hello George - yes, very sore fingers this last week - ongoing at the moment. I have completed 12 cycles since restarting on Cape, so 36 weeks. The Onc said that this is a good run before having a little rest - apparently I have done quite well. Good luck with your current/next cycle, George.
Can I just clarify that when the Cape instructions say "take with a meal" they mean a proper meal and not just a snack like a piece of toast etc. as we normally eat our main evening meal between 6-7pm so if I need to space the doses 12hourly I need to be eating breakfast between 6-7 am. which to be truthful I don't fancy eating that early. I am not generally a person to go back to bed once I am up and at the moment my sleep pattern is not very good. Any suggestions gratefully received. Ann xx
Yes they gave me Loperemide so I am well prepared, hopefully I will not need it. I hope your fingers heal quickly and your more comfortable soon. Hugs Ann
Hello Ann, good luck! I hope the hospital gave you some Loperamide tablets for the big D! They work really well (on me, anyway, and on George!).
I have been to the hospital today for my next lot of tablets. They let me take them away with me but I am to have an extra week off due to sore fingers. I am to start them a week today. They are then going to look into reducing my dose slightly for the breathlessness and sore hands.
Well here goes, I take my first dose of Cape this evening 1800mgs to try to dry up pleural effusions which are being managed with PleurX catheters, I had inserted in March this year. I have ordered the Udderley cream from Amazon recommended by members on the forum, which I have found so informative. I have always had a very sensitive digestive problem bordering on IBS so I am not looking forward to the possible se that may occur with Cape. I have also heeded some of the advice posted on the forum in relation to the big D and have prepared by stocking up on wet tissues !!!! Just hoping now that Cape will be effective by reducing the amount of fluid currently draining between 300-600 mls each side every 5-6 days, so that I can have the catheters removed. Ann
glad things have settled down; it is always an anxious time when you have a change of treatment. I don't have problems with nausea, but I do suffer from a dodgy tummy so never leave the house without my Loperamide. Sticking to bland food too which is not always that appetising. Have also discovered Flexitol,which I have been using on my feet- it was recommended by someone on this site and I have found it to be very effective. Good luck for Friday. Sure onc will be able to help with side effects
Excellent, Hinchy. So glad you are finding things a little easier! Hope it stays that way, or improves further.
Hi ladies thanks very much for the tips. I'm still struggling with nausea but managing to eat little and often. Off to see my onc on fri so fingers crossed he will have a plan for me!
Love hinchy x x
enjoy your new coat and jumper. Sounds like you are preparing for winter. Me too. Meditation was very relaxing. We don't lie down, just sit in a chair as instructor takes us on a journey. Also, had reflexology today which was so relaxin ing I fell asleep and woke myself up snoring. Bit embarrassing.
Have a good week
Well done you for all the retail therapy; it does make you feel good. I am loving my new jumpers. Let us know how the new chemo goes, pleased it is working well so far.
Off to see Blood Brothers in Birmingham on Wednesday- one of my 'feel good' therapies. I went to a medication class today which was wonderful, so relaxing.
Have a good week everyone
Hi Deedeepuss, the Udderley Smooth cream I use is extra care 20 as it has more urea in it. Your smoothies sound delicious, something I must get into.
Hinchey, sorry you have had to join us. I can only echo what the others have said regarding SEs. My oncologist said he had to reduce the dose in 90 per cent of his patients and that a reduced dose is just as effective. This was also echoed in a booklet I found on the Breastcare website about Cape so I would talk to your team about the side effects, don't suffer any more. Cape does seem to be an effective treatment as it has shrunk one of my liver mets by 50 percent in a short time so fingers crossed it continues. I don't like taking the tablets so, ridiculous as it sounds, I have renamed them cancer killers which helps psychologically. (CKs for short)
Waffles, pleased that the side effects of your new chemo are not too bad and that you have managed some retail therapy. It is a shock when the treatment stops working. I was devastated when Taxol stopped working
as, like you, I felt quite well. It is difficult when we have to start a new regime, but you seem to be doing well.
Have a good weekend all.
Hello Waffles, we were sorry to "lose" you from this thread, but I'm so glad you are doing well on the Navelbine! That is really good to hear. Keep it up.
Thank-you for advising get on the udderly cream, I'd looked on Amazon but there were all sorts, shea, urea!
I've just finished my 2nd cycle, and feel better than the 1st round. I've found that fruit smoothies help when you don't really feel hungry. I've been blending oranges, banana, strawberries, apples, melon, all sorts with a little water. My friend throws in some watercress too, I tried it and it is really nice and refreshing. I haven't tried it yet but my friend also freezes some chopped pineapple and blends that in and says it's really good. Will try that next week.
I'm going to work next week to discuss a phased return at the end of the month. It will be slowly slowly.
Enjoy the weekend
Soory you have had to join us, Hinchy, but welcome. I can sympathise with your se's, but I haven't suffered that badly, and have had absolutely no nausea or sickness. Moijan is right - please speak again to your Onc and perhaps ask for a slightly lower dose, or an adjusted timetable (the Americans seem to use the 7 days on, 7 days off regime - that Moijan was on - a lot). My dose was lowered slightly after my first 10 cycles because I was suffering from extreme breathlessness by then, however I continue on the 14/7 day regime.
Other than that, all I can suggest is also Moijans suggestion - that you make sure you eat plenty when you take the pills. That has 2 effects - firstly, it helps the pills activate and do what they are supposed to do, and, secondly, it is supposed to minimise the sickness (can't answer for that of course).
I hope this is some help, but sorry I can't offer more.
Udderley Smooth is the original and best, it has tubs with pics of cows on...see Amazon
Yes Helen. My first cycle was dreadful..kept a journal and wrote 'life isnt worth living' the onc reviwed, made the dosage one week on, one week off and reduced the dose. It worked well. For almost two years on the new regime. I think they bump you on the highest dose for your weight to see if you can tolerate it.
keep mobile, eg do not lie down for a day, walk about every hour or so...as i got a dvt, as a result ofnot being mobile, the antisickness tabs also are s/e dvt, which isnt everyone but i was unlucky
Take the tablets with piles of food too, that helps. You could try milk or soups if your not hungry, or just gorge yourself on things you do like..I think it works better with food.
use a lot of cream on fingers and feet.
imiss cape, it gaveme such freedom. I carried the antisickness, anti diarrhoea and wipes around with me all the time as was at uni( also spare knickers...tho i didn t need them.)
its a good drug, try and negotiate the dose change/weeks. Love and hugs,
Im just wanted to reach out to you Cape ladies !
I have just coming to the end of my first cape cycle (diagnosed with liver mets and additinal bone mets three weeks ago) - had previously been on hormone therapies for mets on my spine for the last three years. Im 40 years old and I have to children ages 5 and 8.
I have found it unbearable - I have had the most overwelming nausea, lack of appetite lack of taste. I got to the point where I was becoming scared of taking the tablets (also as the nausea didnt help!). Over the last couple of days my feet have been very very sore to the point where I was having difficulty walking.
The docs have given me lots of antisickness - ondansatrom and it did help a little but Im just not going to be able to go on as I have been .
I just wondered if any of you lovely ladies have any pearls of wisdom!
Lots of love Hinchy xx
I am just wondering how Corey is. Has anyone heard from her? She started Cape a little while ago, I believe, but haven't heard how she is getting on.
Ps - scrap that - have just reread one of her pm's and she is on IV chemo. Still wondering how she is doing, though!
Well done, Denise, for the excellent drop in tumour markers! That is such good news! Long may it continue.
I hope you had a good weekend George. Weathers been cooler but pleasant, hope Scotland shared the blue skies with you.
I'm on my 2nd round of Cape, so think I'm officially a Cape Cruise derived now, albeit a newbie to the drug. I've been using Ave enough, but not over keen on the oatmeal odour. I believe Udder cream is really good, but there are so many different ones. Can anyone enlighten me on which one is good Please?
Yesterday was the first day I felt like me since radiotherapy, so feeling better. Had my blood cancer marker result yesterday too and it's dropped by 7, something I wasn't expecting. I thought it would continue to rise for quite a while, so was extremely surprised and really happy.
George, know what you mean about the Magic Pills - I take some everywhere with me, too!
Brilliant news George all that worrying was worth waiting for enjoy your celebrations.
Love and (((hugs))) xxx
Thats wonderful news, George - well done. Stress over for the next 3 months now! Relax and treat yourself to something (be it wine or chocolate, or maybe both!).
Hugs, and so pleased for you!