Janice I think we all feel like that and I hope the injections work well for you. At least you don’t have clock watch to take your tablets. I’ve just finished cycle 10, I had 6 weeks off for a op and really missed taking them. Sounds absolutely bizaar doesn’t it.
LG - I started on 2150 twice a day when I first set out. I’m 5ft 3in and my weight yoyo’s between 10 7 and 11 stone. I had a bad reaction on the second dose and could not walk as the pain was so bad on the soles of my feet so my oncologist reduce the chemo til 1650 x2. Had this for 5 cycles but feet not really bad but nurse though another reduction would help side effects so its not reduced til 1500 x2 which seems to be working. Only thing its accumulative so se get worse. Not everyone have these se so I really hope that you’re one of the lucky ones.
Janice, have you thought of asking your medical team to do a biopsy of the lump you refer to? The thing is, even if your cancer was ER+ when you were first diagnosed, that doesn;t mean it is ER+ now, as cancer can, and frequently does change it’s receptor status (that’s what happened to me). I’m not a doctor, but it just seems odd that if your cancer has stopped responding to Tamoxifen and Letrozole, and has not responded to Capacetibine. That leads me to wonder if perhaps it has becomeHer2+ and requires Herceptin. In anycase you have nothing to lose by getting a biopsy - as it would either confirm or rule things out.
Steris the SE’s sound dreadful, and as I like walking I’m rather anxious about what is going to happen. Think if I get a similar problem, I will reduce the culprits myself.
Hi that happened to me , my cance came back in my breast as er minusrehearse it was minus before , I think my lung mets are from original tumour, but who knows, I am on 1800 mg xeloda twice a day I am 5 foot 9 and I am about 11 and half stone , I eat small meals nothing fatty , I find if I pig out I feel sick , so lots of nuts apples and chineses ,
Ann - I eat takeaway sandwiches with salad in them, but just tend to use outlets I had used pre-chemo to be on the safe side.
Lemongrove - I’m on 2000 mg x 2 per day. I’m 5’2’’ and around 56 kilos in weight. I think it’s the max dose for my height and weight. I’m on 4th cycle and haven’t had my dose reduced yet. Hands and feet bother me a bit, but actually don’t stop me walking anywhere as yet. I think that’s one of the SEs that they’ll reduce the dose if it’s that bad.
Janice - sorry you’ve developed resistance and hope Fulvestrant works for you.
My onc fitted me in with an additional appt today, as I’ve had a few headaches in the last week and was getting a bit worried. She thinks I might just have had a bit of a bug as was OK today but as I have a CT scan before my next regular appt she’ll get an additional check on the head as well to be on the safe side. I tend to think it’s probably nothing but prefer to know either way.
Has anyone experienced a sort of ‘tightness’ around the middle whilst on Xeloda? I am on my second cycle and I had this discomfort on the first cycle for a few days - and again this time. It is hard to describe. I think it is worse if my stomach is empty. I wonder if it is to do with wind but I am not sure. Any ideas?
Hello everyone.
My wife Kim who has a local reoccurence was on her first round of Xeloda, 2150mg twice a day. (She’s 49 and about 10 1/2 stone) By half way through her second week, Wednesday just gone, she had rotten diarrhea and by yesterday morning was unable to eat and barely drink. After getting hold of her oncologist he has told her to stop the course and they will reduce her dose and start her again a week on Monday. Her D has stopped more or less and the the doc came out yesterday and gave her an anti sickness injection and some metoclopramide to try alongside her domperidone. This morning she seems barely any better. I’m really struggling to help. She’s sipping a little water and lucozade but they make her retch badly and just the thought of milky drinks do the same. Any tips on what she might try? Is getting any kind of food down likely to help or not? Sorry to be posting on her behalf but she’s never really done the on-line thing. Jon.
Hi Jon, I am 43 years oldabout 11 and a half stone 5 foot 6 and am on 1800 mgs twice a day. I eat porridge for breakfast , and nuts something light for lunch and zeal in the evening , I find little and often works like an apple or almonds, I had z reoccurrence and lung mets , can I ask are they intending to remove your wife’s reoccurrence ? Does she have mets ?
Hello Jon I am sorry that Kim as had such a rough time of it. I think it doesn’t matter if she cannot eat anything but she must try to drink even teaspoons of water. But if she is really bad there are sachets that you can buy that have salts and other added things in them if you are dehidrated. The chemist wil know the name, I think it could be called Dioralite. Sounds like that anyway. It replaces the salts etc than use lose when you are sick etc.
It is difficut to get the dose right with Capecitabine/Xeloda and it is VERY COMMON to reduce the dosage if the first dose proves to have too many side effects. I had to reduce the amount but your Oncologist should be able to herlp with this. Have you tried calling the ON DUTY REGISRAR FOR ONCOLOGY at her hospital for some advice. I have done that in the past. Hope she is feeling better today. Tell her not to worry. I am sure things will improve for her once they get her sorted. Hiugs to you both, VAL.
Hi Jon, hope Kim is feeling better. You could also try cola as this is good for replacing minerals. I think it’s best if it’s a bit flat if she’s still feeling dodgy. It’s more important to replace fluids than solid food. As Val says it’s common to have a bit of trial and error with the dose to begin with. They start you off based on height and weight. It’s only a real concern if you’re suffering too much in the first few days as it might mean you lack an enzyme that’s required for it to work, but if she was doing OK into the second week it doesn’t sound like that was the problem. Maybe you could try less solid soups as well.
Thank you all for your support and advice. The sickness has eased now but she’s still struggling to eat though she is getting more fluids down. I think the problem now is she’s so worried that whatever she tries will have her retching again. I’ve just spoken to the out of hours doc again and he thinks it’s possible she might have esophageal thrush. Why do these things always get worse at night or weekends when no one is around. I’ll be down at the shops in the morning getting melon (which she likes the sound of) ginger beer and consomme.
Hi Pinkylou. She had a full CT and a bone scan both of which were clear. She has two nodes that have come up which they can’t operate on as there is too much risk. She’s also triple negative. Did you start on 1800 or was it reduced to that as you are about the same height and weight as Kim.
Hi Jon , hope Kim is ok, yes that was the dose that I have been on since he beginning , I am on week one of cycle three , I eat my breakfast early like 7 or 8 and then eat my tea at 6 or 7 and always keep my tablets that far apart. On asda they do a pack of melon 3 different types it’s only a pound and I find it’s really refreshing , I get 3 or 4 every couple of days .
Hi ladies and Jon…i have come to join you today!
I have started the Capecitabine this morning …and waiting for something to happen! I am supposed to be on a reduced dose of 3600mg daily 5’ft 3’inches…and 12 and a half stone…mostly my chemo tummy…well thats where it mostly has gone!
I am on it indefinately…but as some of you dear ladies know …i am off to the Royal Marsden next month…so things might change…i wanted to know if that is considered a ‘low’ dose please? I must admit i felt the same feeling taking these pills this morning…as i did when the EC went into my hand…and i have …never felt the same since…’ spaced’ out! I am going to take them 10am and 10pm…as i get up at 8.30am and as an ex smoker i am not used to eating very early…
Still wondering what is going to happen first…please bear with me for being so selfish today and only talking about myself …sorry!
Dulcie xxxx
Hi dulcie , nice to meet you , what’s your story ? I had a reoccurrence in my breast and I have 8 lung specs , I am wondering about royal marsden , I am five foot 6 and 11 half stone and I am 3600 mgs , I think 4200 is max not sure who you have mets ?
Hi pinkylou x
It would take a full page to tell my story…you would have ‘nodded’ off! lol
I have a ‘rare’ breast cancer and hospital haven’t come across it before…well if they have they are not cracking on! I was misdiagnosed last November…then found to have breast cancer end of February…nothing happened until April …my birthday…then i had to EC’s which both times ended up in hospital…so that was stopped in agreement between me and Onc…wasn’t offered a reduced or anything…tumour grew to six and a half cms! Had full mx with lymph node clearance…problems problems drain removed to fast …in my opinion…if they had done a CT scan before mx …they would have seen a change in my lungs…so such big surgery wasn’t needed…in April they had found 2 tiny dots in lungs…thought it was nothing much!..so now growing nicely in lungs…my mx has been red and sore…surgeon…not bothered…can’t have radiation…the ‘tattoo’ set the inflamation off even more! So now i have possible skin mets…and reacurrence back on wound site…so after massive delay…put on this chemo…i had to leave a lot out…are you still awake pinkylou…
The only good thing to come of any of this…? i have made some of the best friends ever! And i am off to the Royal Marsden…where i might get far better treatment…and…KINDNESS!
Take care and please tell me your story x
Dulcie xxxx
I’ll be down at the shops in the morning getting melon (which she likes the sound of) ginger beer and consomme.