Well........I started my Xeloda again at 8am this morning. Started getting signs of faint heartburn around lunchtime but it hasnt fully come out yet. Im hoping thats cos the Omeprezole & Ranitidine has worked but think its more to do with it being my 1st day on the Xeloda again. At about 5pm I started getting a really really achey jaw.
Im sooooo pee'd off its not funny. I dont know if this is due to the dose being strong or cos im just not suited to them?
So, instead of taking my full dose (2500mg) this evening I have taken less (2000mg) and will see what effects I get from that. I would keep my fingers crossed and pray to god that reducing the dose helps but I dont think he likes me very much??!! (neither will my Onc when he finds out!!!) but is a slightly reduced dose better than no dose at all?
Again keep your fingers crossed for me?!
Julie x x
I'm back at the Marsden tomorrow for my 3rd cycle of xeloda (along with lapatinib).
Have been fine until these past two weeks when heartburn started, also other side effects are to be kicking in such as sore split skin around finger/toenails, nausea and upset tum, spotty skin!
Found the above posts very helpful, thank you. Will be mentioning recommendations tomorrow.
I can see what you are saying, but I have not suffered with heartburn since finishing Taxotere (in August 07).
I have not taken the Xeloda since Thurs morning and I have felt fine.
I have been taking the Omeprazole and Ranitide past couple of days to get it built up in my system and am gonna start the Xeloda again in the morning. Im dreading it I can tell you!!
Keep your fingers fingers crossed for me!!
Apparently once you've had the steroids the damage is done.I've finished the Tax and steroids now but still have some pain in chest.Still taking 40mg of Omeprazole.
My point is,is that it may be from the steroids not the Xeloda.
Im not taking steroids with the Xeloda.
Like you I had steroids when I had taxotere last year and I got heartburn with that, but not anywhere near as bad as what im experiencing now.
Are you all taking steroids with your Xeloda? As I said above,I was on Taxotere and getting terrible acid reflux which is a side effect of the steroids not the Chemo.
I'm another one.
I started out at 1800mg twice a day (was having vinorilbine at same time), then reduced to 1500mg and then to 1300mg. I only had 9 cycles in all because it didn't work on the tumours in my neck (the vinorilbine did better).
Hi Julie, I was started on a low dose..1500mgs. My dose is slowly being raised each cycle if I'm tolerating Xeloda well, I've just finished my 2nd cycle..this time 1800mgs and have had no problems.
Hi again Julie,
I have checked back thru my notes. I was started at 2000mg and like you reacted immediately to the drug. I had nausea, vomitting, diarrhoea and the heartburn and plantar palmar syndrome (the sore red hands and feet). After just the first week my onc told me to stop for a week and then restart. When I started again the symptoms returned and so on the second cycle it was reduced by 25% to 1500mg. I still struggled over the next two cycles and was taken off the drug as it wasnt working for me (at this time I had a lot of enlarged nodes and those in my neck and collar bone were obvious so we could see the drug wasnt working.
I am treated at the Royal Marsden and they have had to reduced dosage on all the chemos I have ever been on!
Like so many others who have posted about their experiences with Xeloda, my onc started me on a relatively high "recommended" dose of this drug 4Â½ years ago for my liver mets -- 2000mg x twice a day; two weeks on and one week off. Its results were fabulous -- shrank and disappeared most of my liver mets very quickly -- and I tolerated this OK for the first few courses, but then developed hand/foot syndrome and a range of digestive problems, including mild heartburn, nausea, diahorrea, constipation, etc. After agreeing to a couple of "chemo-breaks" in the first year I had this drug because of side effects, my onc reduced the dose (twice), to enable me to continue to take the drug whilst keeping a good quality of life. This has been great for me -- I'm taking 1000mg x twice a day now, hardly notice any side effects and my liver mets have been stable for a long time.
My onc's view is that, if this drug is working for us, a lower dose that helps us stay on Xeloda for continuous courses over a long period without terrible side effects is much more effective than a higher dose that has to be interrupted frequently when we're not tolerating it well. I'll "whisper" his contact details to you -- good luck in negotiating with your onc to try Xeloda at a lower dose, and hope that it works well for you.
Can I suggest that you print off some of the posts here to show to your Onc (there is no way that you can identify people from the posts); you could even 'whisper' some of them and they might be good enough to tell you where they are being treated so that your Onc can ring the other consultants up if he wishes, as I know that not all cases are alike.
It is always difficult to argue against a professional but here you have evidence of reducing Xeloda and you can ask him to give you his case for refusing to reduce yours. As a last resort you can ask for a second opinion.
I too am on a reduced dose of Xeloda (1800mg). My onc is planning to increase it if all goes well (just starting my 2nd cycle) but when I saw him yesterday he reassured me by saying that even if I had to stay on the reduced dose, it could still be extremely effective in shrinking my liver tumours. And as Kathryn says, there are several people on here who have had their doses reduced and yet it remains effective. So I too would suggest you go back to your onc and talk through again whether you could continue on a reduced dose.
Good luck - really hope that the heartburn settles down with a few days off the xeloda.
I know exactly what you are going through! I've been on Tax(finished 3 weeks ago)and Herceptin(still on).At the end of April I got the most excruciating pain I have ever felt in my chest.It was in the middle of the night and I couldn't lie down or move around.Anyway,I went to hospital and was given Omeprazole and Gaviscon to take home.The Dr said it is a side effect of the steroids we have to take.The pain went away the next day.A week later it came back but much worse and I ended up going to A+E.It was so bad that they gave me Morphine twice,which helped.They kept me overnight in hospital to give me x-ray and ct scan to rule out other things.
Now I take 40mg but a week ago I dropped down to 20mg myself but yesterday all my shoulders,back,chest,neck,jaw and roof of mouth were hurting and I thought the pain was going to return so I upped the dose again.
I never want to feel pain like that again!
I am on1500 mg twice a day and am finding it quite manageable. I have read several posts where the dose has been reduced because of sideffects. i would have another discussion with your oncologist
My Onc said its very rare for Xeloda to cause the heartburn that im getting.......but there seems to be lots of you lovely ladies out there that seem to have problems with it too?
I am on the maximum dose of 2500mg twice a day which is chuffing high!
I am gonna stop the Xeloda for a few days until the heartburn has improved but gotta admit im scared to death about restarting them as chances are its gonna happen again.
If I have problems agin then ive to go back to see my onc and review the treatment plan.
Thanks to you all for replying to my post.
I am on cycle 8 of xeloda - i was started off on a max dose of 200mg x a day. I also had horrendous heartburn to the point i was physically sick most of the time,couldnt eat or drink and just wanted to sleep all of the time. Gaviscon made me sick and so did most of the mouthwashes they gave me. Like you i felt so bad i considered just stopping taking xeloda altogether. My onc reduced my dose by half, prescriped lanzoprasol (or zoton) and also 10mg of metoclopramide 3 x per day to combat the sickness. I just used salt water to rinse my mouth out (had to be careful not to swallow it) and all of these thing have helped enourmously. have also had good scan results too.
I cant see any reason why they wont reduce the dose - after all arent they suppose to balance quality of life with effective chemo regimes - stand your ground and ask them WHY they wont reduce the dosage... after all one size does not neccesarily fit all.
I've been on omeprazole for several years now since FEC. It makes all the difference. Your GP or oncologist can prescribe it, but you might want to check with the chemo nurses first.
Just thought I would update you about the heartburn!
I spent another few hours at the hospital today seeing my Onc as my breast care nurse advised me to ring the chemo suite for advice.
I had 3 hours sleep last night. Woke up at about 2.30am due to the pain.
I was sat in the bathroom at 3am crying my eyes out. I just didnt know what to do with myself. Im ashamed to say I actually said to my partner that if this is what I have to put up with I would rather just die now. But that just shows how miserable it was making me feel.
Today I have been headachey, light/fuzzy headed and my jaw aches....(?) as well as the heartburn.
Im usually a very VERY talkative and happy person but the past 2 days I have been very quiet and subdued. Havent wanted to eat anything either which is not like me either. My OH can tell how miserable I have been by the change in me, which has really concerned him.
The Onc thinks that I have very severe heartburn and is rather concerned how bad it is at such a short space of time taking the Xeloda tablets (only started them on Tuesday).
He has said to stop taking the Xeloda for a few days and has given me some Omprezole (40mg) and Ranitidine to try relieve the heartburn symptoms and once I start feeling better to restart the Xeloda and see if I get the problems again.
I asked if there was any chance of reducing the dosage but he was very reluctant to. He basically said its all or nothing, either we give you the tablets or we don't? I dont see why he wont reduce the dosage? Its obviously far too strong for me? He thinks that I am just not suited to Xeloda which had me crying as I feel that if im taken off them my lifeline has been removed from me. I have read that so many ladies respond well to them and have done so for years I wanted it for me too. I feel like that there is not gonna be any hope for me if I cant take them?
I really think a dose reduction should be tried but how do I convince my Onc?
When I had Taxotere last year the 1st dose put me in hospital as it was far too strong, they reduced it by 25% and it worked wonders. Why wont they with the Xeloda??
Im so sorry for going on but I feel so sad and miserable at the moment.
When I was being treated for reflux problem I was started for 2 months on high dose of omeprazole - 40mg and have been gradually reducing - 30mg for 3 months and now 20mg for some time yet. Although the consultant I saw was fairly sure it was a longstanding problem he felt the chemos I had been thru had done a lot of damage - so if you are experiencing heartburn and digestive problems while on chemos do ask your oncs about protecting your GI tract.
I am taking Lansoprazole 30mg in the morning (plus gaviscon later in the day when needed). As Blondie says you have to repair I have a mouth wash/liquid called Antisepsin (sp.) which helps the healing.
The other name for Lansoprazole, that Val mentioned, is Zoton. When I was bad with heartburn I was on 30mg tablets (one a day) so perhaps you aren't on a high enough dose but remember that, however high a dose, you will still have to 'repair' your esophagus and that will take a day or so at least.
You have my sympathies
I find Omeprazole is the only thing which removes my heartburn which is caused by a hiatus hernia.I take 20mg every morning before eating and never have any problem.You can buy 10mg across counter in chemist[name there begins with a Z I think ]so you could try it yourself and get a prescription if it works.Love Valx
I am on day 4 of Xeloda and so far no problems but I have been taking omeprazole daily first thing in the morning as my system has never recovered from FEC .I still sometimes have such a build up of acid that I am physically sick. I don't find that what I eat makes any difference, I can eat a curry quite happily and then be sick on my morning muesli! I do take the Xeloda actually with my meal, breakfast and dinner.I really do sympathise with the heartburn , it's probably the worst side
effect. Oh and apparantly black coffee is the worst offender according to my chemo nurses, I was having a moan while sipping a cup, much to their horror!
Best Wishes Kathryn
I dont know if this is any help but my mother in law spent 10 days in hospital as her heartburn was so horrendous she convinced herself it was a heart attack (and this was nothing to do with breast cancer or anything serious) it took a full angiogram to convince people it wasnt. She still has problems with reflux but not to the same scale. I guess my point is that it can be really full on heartburn and be nothing to do with your heart.
I know how worried you've been about starting Xeloda, and that anxiety will be really knocking your confidence now that you've had what we all hope is "just" heartburn. I did occasionally get heartburn/nausea when I was on a higher dose, and a lot of others on Xeloda have had digestive side effects as well, so it seems quite common, but that doesn't make it any less scary for you right now. I'm hoping that the pains you're having are, as Blondie has suggested, only the result of this morning's heartburn, and that the lanzoprazole you'll be taking over the next few days will take care of all that for you.
Just a thought -- you might try taking your Xeloda immediately after you've eaten, rather than waiting 30 minutes; also remember to have water with your tablets, rather than anything to drink which might irritate your stomach, e.g. fruit juice.
Xeloda has worked well for me over the last 4Â½ years, and I do hope you get a good result from it as well.
Thank you for your replies.
I have just got back from a 2 1/2 hour wait at the hospital.
I rang the chemo ward for advice as the heartburn came back with vengence!
I was told to go to the hospital just to be checked out to ensure it was heartburn and not the tablets causing problems to my heart.
Well..........I had my blood pressure and temperature taken and one of those heart rate/pulse monitor thingies put on my finger, then left to wait for about 2 hours for a doctor to come and tell me he didn't think it was a heart problem and gave me a drink of gaviscon. Needless to say I still have the heartburn! Doc said to take the lanzoprazole tablets (that I was given earlier at the hospital) a couple of times a day for a few days until it gets built up in my system.
I still can't help not being convinced that its only heartburn. Ive never felt anything like it!
I describe the pain as like when you have been running and your chest hurts/burns after (if that makes sense?)
My partner is trying his best to convince me that this sounds just like heartburn..........
Im sorry for going on but I can't help feeling worried!!!
I too have to use lanzoprazole but be patient with it as you have probably got some damage to the tissues due to reflux (burning due to the gastric juices) and this will take some time to clear before you can be completely comfortable. I take my tablet half an hour before my breakfast and that seems to help me.
Hope you get relief soon as heartburn is miserable.
I have had awful heartburn on all 3 chemos I've had (FEC, then Taxol and now Xeloda), and at some intervals in between. I do find though that lanzoprazole works quite well - but I have to take it first thing in the morning, ie before I get any heartburn at all. If I take it after I start getting symptoms, it doesn't work and I usually end up still feeling awful and then being sick. So if you haven't been given something like lanzoprazole (which reduces the amount of stomach acid you produce) then do go back and ask. And if you have, try taking it first thing in the morning.
Hope that helps.
Hi Ladies, Have found xeloda can make you feel nauseaous but as Kate says having a substantial meal helps and not one full of fat which made the heartburn worse. Have not had diarrhoea just a bit less constipated than before. In fact have hearetburn now as had a curry !!
I found I had to take xeloda within 15 -30 minutes of eating a substantial meal to avoid nausea and heartburn. I also took omeprazole which really helps with heartburn. Xeloda does have a huge effect on the gastro intestinal tract so heartburn, nausea, and diarrhoea are common.Hope you feel better and speak to your chemo helpline or GP asap.
All the best
julie I had awful problems on xeloda with digestion and heartburn. If felt as if I had food permanently lodged in the top of my throat. I think the stuff is so strong it affects the gastro intestinal tract - don't know what the hospital prescribed you for the heartburn but if it is stuff like gaviscon or ranitidine I would be asking for a proton pump inhibitor such as omeprazole or lanzoprazole. They are much more effective and you can start with the higher does and drop down if it works.
I didn't have Xeloda but I did have FEC which gave me incredible heartburn, so much so, that I was up all night one night as it was so uncomfortable. Felt like I had a lump in my throat which wouldn't go, and tremendous pain in my chest going right through into my back plus burning. I tried all kinds of meds but the only thing which helped a little was gaviscon and simple rennie tablets. One thing I did notice was that if I ate too much, food that was too rich or fatty food, it made it worse.
Hope you get sorted as I know how horrible that can be
Has anyone out there suffered with raging heartburn whilst taking Xeloda?
I am on my 2nd day and have had mega raging heartburn today.
Its been so bad I have nearly been in tears all afternoon.
I had a bone scan today so whilst at the hospital I called into the chemo suite and was given some tablets.
It held the heartburn off for about an hour but it starting to come back again.
Im scared to death in case its not heartburn im having an its some kind of heart problem caused by Xeloda?
How can you tell? And what can I do?
Im due to take my next lot of Xeloda at 8pm and basically im scared to death!
Any words of encouragement or advise ladies?