deleted as posted twice - seems to be endemic to the new site right now! x
Read your post last night Marilyn and dashed out to the pharmacy straight away - tried the Scholl cream last night, and first impressions are all good 
Stopped taking the peachy pills (Xeloda) on Friday on onc’s advice as my feet were getting really quite bad, but not much improvement as yet - (sore) fingers crossed that the next few days will begin to see a difference.
Homer - glad your pain is under control: constant pain can really wear you down.
Laura - your feet seem to be exhibiting classic hand/foot syndrome from the drug: cream to soothe and moisturise and comfy (and ideally supportive) shoes seem the answer, or speak to your onc if it gets too sore and the skin begins splitting
Anne - hope you have a lovely break!
Best wishes to all,
Julie x
So sorry to butt in on your thread but I am on this drug and haven’t got anyone to ring or ask being it the weekend and hopefully one of you can put my mind at rest.
Been living with the secondaries for 18+ months and was prescribed this drug and am on my 2nd cycle of it. I was prepared for the sore hands and feet but my feet are so painful that I am managing to walk during the daytime with it becoming increasing painful during the afternoon so much so that by eve I am unable to walk or stand on them due to the pain. I know that it says to stop taking immedediately on the small wording but I am very reluctant too as with being my age with 2 children, I want to give this the very best shot I can & yes I am told I’m stubborn. Just keep thinking I am on day 11 now out of 14 and should I be persevering, now worring I might be causing long term damage! Sorry if this sounds funny but you get lots of thinking time when you’re in this position don’t you.
Sam x
Hi Sam - so sorry to hear you’re having a huge problem with your feet on the Xeloda - usually, side effects are worse the higher your dose of the drug. It might be possible for your onc to reduce your dose, or change the timing of your dose, and still have it be effective. Some of us have had our dose reduced and are on a low-ish “maintenance” dose - I’ve been on my reduced dose of 1000mg x twice a day; two weeks on, one week off for over 6 years. And at least one of us - Julie - is on a daily lower dose, with no time off.
Does your oncology team/hospital have a “chemotherapy hotline” that you can ring for advice or support today? I know my hospital (The Christie, in Manchester) has this service. Failing that, I’d recommend that you ring your onc tomorrow morning, to tell her/him what’s going on for you, and to ask about a lower dose or even a short chemo-break.
Our oncs want us to have treatment that is effective, but doesn’t reduce our quality of life so that it becomes impossible for us to function. With secondary BC, it’s always about a balance between long life & good life. Your onc will want you to have a treatment that you can tolerate, so I’m sure s/he will be happy to talk to you about this, and will hopefully be able to offer you a quick solution.
Good luck with this treatment - I hope it’s as effective for you as it has been for me and many others here. xx
Hi Marilf - Thank you so much for your kind message. I did ring the cancer ward up the hospital and an on call doctor advised me to stop taking them straight away and to ring oncology in the morn but I am so stubborn and I didn’t like to think of not taking anything at all, What I really wanted them to say (after thinking about it) was whether they were adv me to stop because I may be causing damage to my feet, I know it sounds silly but they are so painful and I struggle to walk to even get a drink or a wee or whether they were adv me to stop because of as you say quality of life. I have assumed that it was because of the latter and have carried on taking them as I have nothing planned for the next 2 days and we car share the school run and that is taken care off. Sorry to be nosey as well but I took a peek at your profile and just wanted to say how much inspiration and hope I have received from reading about your diagnosis and the dates at which you were diagnosed. Many thanks again. Sam x
I’ve just been reading though this thread and its great and
full of tips for us new Xeloda princesses.
My tip to share is for anyone with painful feet. My friend has lent me a pair of her
Crocs. The proper ones not the cheapy £3
ones like I’ve got. The difference between
the 2 are that they are spongier and so much more confortable. I’ve ordered a pair, a lot cheaper online
though x
Sorry about the state of that last mess, tried to copy and paste from Word and it has appeared totally different to how I left it
Hi again Sam
Of course, it’s up to you to decide whether or not to stop taking the Xeloda a bit early during this course or keep going until the end, but I think it would still be useful for you to ring your onc tomorrow to talk to someone who might be a bit more familiar with (a) your particular health situation and (b) Xeloda and its side effects. We all respond so differently to our treatments, so it’s difficult to say whether your foot-pain is “serious”, i.e. indicative of a longer-term problem, or if it will gradually disappear during your week off. Your onc might feel that you could have a little “tweek” in your dosage to make it more bearable for you during your next course - you just need to have that discussion with her/him. As I’ve said, our oncs want us to be able to tolerate our treatments AND still manage to live as well as possible.
I wear Crocs flip-flops around the house and in the garden as soon as it’s warm enough for me to put my slippers away for the summer, and I know other Xeloda-users who wear ordinary Crocs too for their roominess, sponginess and generous toe area.
Those of us who have used the forums here regularly were desperate for BCC to retain the capacity for us to keep our profiles some years ago, when the forums were going through an earlier change. Knowing a bit about each others’ situations helps to guide our discussions, make links, share experiences and reduce the amount of repeated information in posts. So I hope you’ll fill in your profile when you feel up to it - I need to go back to mine & put treatment info in - lost in this latest forum upgrade.
Take care -
Marilyn x
… Here I am on the new Forum. Seems there are some “side effects” of the changeover … lol… I daren’t post links as the Forum is still unstable (though improving) and I’m not sure where all the threads are anyway!
Hope you are all doing OK. I’m now on cycle 19, apparently my tumour markers are still decreasing slowly, more than a year after starting treatment. Not interested in Facebook so I’ll keep checking these forums.
Mrs Blue, how inspiring to read your post about your tumour markers decreasing albeit slowly a year after starting treatment. I’m a newbie on this drug and am hoping as well as all of us that it will agree with me and that we will both be happy!
Marilyn - I drove upto Oncology this morn as cannot bear the sitting around waiting for a phone call which for me wasn’t returned at all on one occasion. My Onc was bleeped and kindly agreed to come and see me, I felt guilty as I know that she should have been elsewhere and kept saying that I would only take 2 mins of her time but she checked me and has stopped this cycle with immediate effect. She knows that I can be quite stubborn and if the reason was because of the pain, that I would have persevered but she was worried about the risk of infection from my open sores and prescribed me B6 which I am glad about as have also read about it on here. She really made me feel better and said that I wasn’t that good on the first cycle at max dose but she agreed when I asked for it again and admitted that she thought I did well to get to day 12 considering the state of my hands and feet. (As from this morning I am unable to do most things such as undo the milk lid, wash my hands in warm water etc. Thak you again for your advice, I’m now on a 9 day break!!
Will now update my profile
Sam x
Hi Sam - glad you found your onc sympathetic and understanding, and hope the little chemo-break will help your poorly feet & hands! Sounds like she’s also considering a dose reduction for you, which would probably make it easier for you to continue on this treatment - all good stuff!
And hi Mrs Blue - good to see you here on the new forums - I’m still finding my way around too and hoping I can keep up with the threads I’ve contributed to in the past. Still, BCC have been able to address most of the more confusing issues around the new format, so I’m confident - and I like the reduction in “pinkification” onscreen and the larger/darker fonts being used. xx
So now I get to be a Princess after only 5 months on Tamoxifen…
Results yesterday showed some progression in the liver, although bones, lymph, breast and lung all stable. Have to have a brain MRI as I’m having, what sounds like, classic migraines, but have to rule out mets, then it’s onto Xeloda on a 3 week cycle.
Have been reading up on all the top tips (thanks to all who have posted) and am off to stock up on various potions and gloves/socks. Think I might also treat myself to a new pair of crocs.
I know fatigue can be a pretty common SE. Anybody working through Vitamin X?
Laurie
Hi Sam,
Just read your horrendous experience and what great advice you had from our lovely Xeloda Queen.
I can relate to you experince as had roug time to with foot/hand problems. On the second cycle I could walk and creamed my feet at lest 20 times that day with udder to try and stop the burning. When I did try to walk it felt like I was walking on hot coal and razor blades. But just like you I was too stubborn to give in. When I went for my check up pre chemo the nurse said you really don’t have to suffer as Marilyn said its quality over quanity, My oncologist reduced the chemo from 2150 twice a day to 1650. I still have problems with my feet but it’s bearable and i hav e to be very good with creaming my feet and hands.
I have cotton gloves when dusting, rubber gloves for cleaning and I’ve brought latex gloves for preparing foods.So I’m pretty much gloved out. Thanks for the Croc’s advice I really don’t like the look of them but if they help I’ll get myself a pair try anything for comfort. I had a 4 week break to go to America and the restarted when I bot back the first cycle was blest as I didn’t have any se then with this cycle which is the seventh for me back to the feet/hand but it’s really bearable. I have a scan on the 28th to see if its working I can do most things. Although I gave up work last year and it was a god decision for me even through I really miss it.
I really hope they find a dose that suit you because even with a reduce it still works but it sounds like you have a good oncologist… I hope your feet and hands are recovering and make the most of your time off.
Love and very best wishes Chris xxx
Hi Chris - good luck with the scan - hope the peachy pills are doing the job for you! Sending you a PM! Marilyn x
Hi Laurie,
Just a word about your migranes. I was getting them and I have never had them in my life so my onc let me have a scan and nothing showed. I still get the headaches but not as bad. I think all these new symptoms are results of stress but need to be checked out.
While I am on here, I came across a good cream yesterday called Flexitol heel balm. I dont know if anyone has tried it but the lady I spoke to said it was excellent.
Good luck with the xeloda. Take care, Sheila x
Evening Everyone,
Chris - Thank you for your kind message, they are going to reduce my dose next week after my now, 9 days off! I am feeling better in myself as been on a break since yesterday am. Hands are now got open sores on them and struggling to do most things such as I couldn’t hold my knife tonight as the metal against them but I am confident that the Vit B I 've been prescribed will help after reading the numerous posts on here about it. Have a look at the Crocs website as I thought they were only available in the Clog style but they have flip flops, sandals etc so you may find something you like and of course there is always the 20 odd coulours to choose from!! I am definatly making good use of my time off as my first cycle I suffered extreme tiredness and was napping every couple of hours and asleep from 7pm for 12 hours for a fortnight, been busy catching up with lots of cuppas with friends, such a good medincine in my opinion. You have reminded me that I must look into this udderly cream as I was prescribed E45. Hope your scan on the 28th brings you that all important good news.
Laurie - sorry to hear about the progression in your liver, do you have any idea how long you have to wait for your brain scan. Like Sheila, I had a lot of bad heads and migraines where I was unable to do anytning and I was offered a brain scan then they stopped, I do hope like us that it is the same in your case. Sending you good vibes.
Marilyn - I have finally managed to update my profile, been trying the last couple of evenings and it just wouldn’t save it but at last it has, think its teething problems with the new site.
Sam x
Hi all just been for my results the cap still working and still having little shrinkage because of my chest inf they have given me a extra wk off also as my hands feet are v red but not painful they have change my cycles to one on one off instead of 2 on 1 off they say will still work ok so hopefully all ok I hope everyone else is getting on ok tc Laura
Hello Ladies
Well, Eribulin is in the past and Xeloda’s my future for the foreseeable. Except I can’t bring myself to take the tablets!!! I got them on Tuesday. I’m self-employed and had hoped to clear the decks of work before Tuesday but it didn’t quite happen. I should be able to start on the tabs tomorrow (but don’t tell the onc I’ve delayed it!).
I’m on 2500 twice a day, which came as a complete shock to me. It didn’t even occur to me that I’d have to take more than one tablet twice a day!! How on earth can I shove 5 tablets down twice a day if my side effects are making me feel so crap?? How do you all do it? It’s one thing to have chemo intravenously and then feel rough, but to swallow tablets knowing they’re going to make you feel so unwell isn’t, well, natural is it?
I’ve been positive about this cancer since being diagnosed in late 2005, but this tablet malarky has really knocked me for six.
I love the new look site. Thanks, techies xx
Good luck to us all.
Hi Granny S - please don’t be put off by the number of tablets your onc (our onc, I think?) has asked you to take - they usually start us off on an “industrial strength” dose, to give the mets a good kicking. I know you’re probably feeling quite knackered after all the IV chemo, and not looking forward to more of the same, but you might not get such a mega-amount of side effects with Xeloda. At least not during the first course - it took a few courses before I felt any ill-effects. And it’s possible to reduce the dose quite considerably if you do have a rough time with it, and it could still be effective. Proof is sitting here typing this message - over 8 years on it, 6 of those on a low dose. Good luck, and let us know how you go on - it would be lovely to see you sometime, too, maybe at next Manchester Cupcake Girls get-together? xx
Thank, Marilyn, you’ve put my mind at rest. I’ve finished my work now so there’s no putting it off any longer. I’ll have to start the tabs tomorrow. And as you rightly say, you’re the living proof that they work, 8 years down the line, and I’m pleased that things are still good for you.
Yep, I’ll keep an eye on the meet-ups thread and hopefully get to the next one.
Good luck to us all.