Hi Julie,
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!
Alli x
Julie
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.
Kay x
Julie
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.
Blondie
Hi Julie
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 4½ 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.
Marilyn x
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!
Dawnhc
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.
Belinda.
x
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).
best wishes
Jane
Hi everyone,
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.
Alli x
Hiya Allicat,
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.
Julie X
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.
Alli x
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!!
X X
Fingers are crossed Julie…
Jane
My fingers crossed too - hope you’re enjoying the sun today with NO heartburn. K x
Hello everyone,
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.
Jackie x
Hiya all,
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