Nicky, re chemo breaks: I am having an extra week off in October so that my son and I can go to Oman for his half term to be with the rest of the family (I normally live in Oman too, just here for treatment, so my husband and daughters are out there on their own at the moment). I’m really looking forward to it. Your romantic trip to Italy sounds fantastic though, and as Belinda says, you can use the EEC health card to cover any possibility of medical problems whilst you are there.
My update is pretty mixed. Xeloda-wise all is going well - I’ve been alternating using Cavalon cream and Flexitol on my feet and they are way better than when I last posted, and the nausea from last week has passed too. Not sure if I’ve said on here already, but I had an op 5 weeks ago to pin my hip and thigh, and my recovery from that is going well too. The bad news is that I had a pain in my (good) leg on Thursday which turns out to be a “substantial” DVT, so I’ve just come home after two nights in hospital with a bag full of syringes to self inject each night. I was worried if that might affect flying in October, but the doctor said with the injections I’ll be the safest person on the plane!
Looking forward to hear how everyone else is getting on,
Nicky, yes, do have your flu jab - I have one every year with no problems from the Xeloda or any other treatment, and you REALLY don’t want flu!
Wish there was such an easy answer to the travel insurance problem for us - no one would provide cover for me to travel to the States earlier this year - although my bone & liver mets have been stable for some time, I have had a lot of mets, and am on more than one treatment; also have tablet-controlled diabetes and some side effects from that. Really annoying that, on paper, I look very poorly and high risk, but in person I actually live a fairly “normal” life. The good news is, as you’re planning a trip to an EU country, your EHIC will cover some health care, but you need to be aware that it won’t pay for a flight home if you need hospitalisation or become seriously ill. When I rang EVERY travel insurance company on the Macmillan list in April, most told me that Xeloda should not be defined as “chemotherapy” for medical screening/insurance purposes, as it’s tablets, rather than an IV one. So you might be able to say “tablets” to a firm like MIA Online, and see what they come up with - their cover is based on “topping up” the EHIC cover, which is why they’re a lot cheaper than most other insurers.
On the issue of having a Xeloda-break for your lovely second honeymoon - this will really depend on how you feel as it gets closer to your travel dates. If you feel OK, just take the little peachy pills with you, and gobble them down as usual (it does get easier to do this in public - no one actually notices!). If you’re starting to have vile side effects, do speak to your onc or chemo hotline people about maybe having an extra week off the tablets.
And geewhiz - hope all goes well getting rid of the pesky DVT, and have a lovely time with your family in Oman next month!
Nicky, hope you’ll get something sorted for your insurance and have a good holiday in Oct.
Second cycle going OK so far. Just rang about Tumour Marker. And despite all the good signs of things are improving (lumps smaller, no more pain), my Tumour Marker has taken a huge leap from 53 to 73!! Well, this is the first time my Tumour Marker has given me a misleading feedback. So I don’t really know what’s going on now.
Will keep praying until I see my onc at my second review… here is me thinking I might get a dose reduction… but who knows now…
I still haven’t started my second dose, as my bloods have actually got worse not better. I believe them this time as when they removed the cannula after my zometa the blood wouldn’t clot! by the time I’d reached the car it was running down my arm. It’s OK now, but I have a very large puffy bruise forming.
I have to see the oncologist this time (last week the chemo nurse deferred for a week) to see what he wants to do, the chemo nurse said he’d not experienced blood problems with xeloda and if on rare ocassions there have been, they are usually OK after a week off. But his idea of an emergency appointment is not mine, his secretary said he has none tommorow and wouldn’t give me one, so it looks like it’ll be back to phoning again and again!,
I wouldn’t be too worried by the tumour markers, my oncologist doesn’t use them, I would use the reducing lumps as a more likely indicator.
Hope you carry on OK with the xeloda, I am in a bit of a limbo at the moment, as I am technically not having any treatment! - holiday plans will have to wait!
Hi Nicky,
Sorry to hear of your problems with your blood, and with getting help from your oncologist. Being in limbo like that is not pleasant - we all want to feel that the best is being done for us. Hopefully this is a blip that can be resolved, and then you can get back to organising your Italian treat.
I’m coming to the end of my week off - I’m off to the hospital for my 3 weekly Abraxane and then will start round 4 of Xeloda on Thursday. I’m feeling fine at the moment, bar the limping from my DVT in the left leg and op on the right - definitely a lady who lurches at the moment! This third cycle has produced more side effects than the first two, so I am a little apprehensive about the next one - will things get worse? Just have to try and see, and I’ll be using the foot cream right from the off this time to try to prevent my feet from getting too bad. I will mention the recurrent nausea to the oncologist too, as I hadn’t had any problems like that before. I’m also going to try to remember to ask him about flu jabs - thanks Belinda and Marif for your info on that. I actually had swine flu last year, so not sure if that would give me immunity?
m1yu, my oncologist also doesn’t pay a lot of attention to tumour markers - he gets the results, but doesn’t seem to base his decisions around them at all, and has said to me that they can be misleading.
Sue - how are you getting on? Hope all is going well.
First week nearly done! I have felt tired but I didnt sleep well at weekend in the BB. I’ve been catching up and resting a lot since comimg home. I’ve had some diarrhea but the loperamide sorts that out. I am taking Lapatinib (Tykerb) as well so it’s just a case of learning whats doing what. The Lapatinib makes me feel a bit sickly but all in all I’ve very pleased with my first week.
I’m keeping my feet cool, I’ve got Fexitol and Udderly, I’ll get some Cavalon. One bit of my lip on the outside is a bit red/sore putting stuff on it and using mouthwashes.
I’ve booked for a flu jab on the 5th Oct, I’ll see my onc in 2 weeks so I’ll check with him about it.
My onc doesnt pay much attention to tumour markers, on me that is.
Hi Sue - so glad to hear your first week has gone pretty well – roll on the next many years! Hope to see you soon, when you feel like some “cupcake time”. xx
I was given this thread by some of the other ladies with bone mets. I just wanted to say reading your comments has made me feel so much better. I’m on my 5th cycle of cap and have very sore feet but hands aren’t too bad. Had most of the side effects at one time or another but thankfully not all together.
it’s strange but my right foot seems to be worse too, I wonder if its due to the cancer being in the right leg? Probably not, I should stop trying to be a doctor. It’s really inspiring to hear that some people have been on the drug for a long time and still doing well.
Check up next week so fingers crossed.
Thanks again and I look forward to chatting to you all again soon and hearing your news.
xx
Hope youre doing well today, I’m still a newbie with Xeloda.I bought some Cavilon cream today at the pharmacy in Tesco, it was expensive about £14 but it is a lovely texture and smell. They said I could probably get it on prescription.
I had my 4th Abraxane yesterday and started my 4th Capecitabine cycle today. I spoke to both the chemo nurse and my oncologist about having had more severe side effects from the xeloda on the third cycle than the previous two, and it seems likely that in my case it was because I had the enforced 2 week extra break between 2 and 3 whilst I went off to have my hip and thigh operated on. Apparently there is evidence that after a break like that you can experience more severe side effects, so fingers crossed that this time it will be easier again. Mind you, I took my first tablets after breakfast this morning and already have scarlet soles on both feet
I am convinced this regime of Abraxane and Xeloda is working for me as I feel so well at the moment, and my bone pain in my torso has definitely diminished, down to one rib I think, whch hopefully I shall have zapped with some radiotherapy at the beginning of October.
My hair has now almost completely gone thanks to the lovely Abraxane, so had great fun at the hairdressers today. Walked in with just my very sparse no 2 cut, then had four haircuts - tidy up of my few remaining hairs plus one for each wig! I had two wigs for my first chemo back in 2008: I was lucky to get a voucher for one and decided to treat myself to another. However, times move on and I’m used to short hair now, so I’ve bought a new one for this time (plus the old ones are just sooo 2008!). Anyway, had all three customised today, and am so happy with the results. Am spoiled for choice of what to wear now, especially as I’ve got 2 new funky hats from Suburban Turban too plus a range of buffs - and I’m still brave enough to go out bareheaded too.
Great to hear everyone’s updates here - hope we all continue to post and support each other through this. Anyway must go now and grab the cavilon cream!
Thanks for asking if I feel better today. The truth is I feel much better knowing that there are people out there that are going through the same issues. I did mange to sleep a bit last night so that helps too.
I haven’t heard of Cavilon cream but will investigate at chemist tomorrow, my feet are moving from red to purple now so I’ll give it a go. Tried some winter shoes on today the shop assistant looked horrified when I put the sock on. I think she thought it was some foot disease. I did try to explain but she didn’t look convinced.
Will get the cream tomorrow and report back, thanks for the tip. xx
Anyone short of a few bricks? Feel as though I have several strapped to each knee this morning! Sorry, this is a bit off topic as not Xeloda related, but down to my other chemo partner in crime Abraxane.
Otherwise, have to say I am feeling well - definitely feel that this chemo combo is doing me good.
A quick question: Does the hand and foot things have a pattern?
I now nearly reached my second week off and my hands and feet are getting a bit worse. It’s mainly the tip of my thumbs (frequent contact with the tablets???) Also my foot are getting a bit red and especially worse first thing in the morning and after a long walk.
I wake up this morning and feels like some needles were stuck in my feet!! Also I can see some black patches (or are they dark red?) I rubbed quite a bit of cream today and seems to be better now. No peeling or crack, though. Seeing onc on Monday so will def mention it.
Looking back at my diary, the hand/foot thing with me is definitely worse during my two weeks on (and especially the first few days) and then recedes in the week off. I have it almost exclusively on my feet, just one split between my index finger and thumb on the left hand but otherwise hands are fine. I haven’t had the black/dark red you describe, but my soles are pretty scarlet and my heels are peeling and cracking, although not too badly.
I’m using Cavilon cream every night (and sometimes morning too), and putting Flexitol on cracked areas inbetween.
I too was wondering about a pattern and the possibility of being able to predict SEs. If the ulcerated lips appear again, I shall have to make a note not to plan doing anything where I am meeting new people, or want to create a good impression (they were gross!)
I like Julie’s idea of keeping a diary. I think I will start that, it is useful to refer back to!
I have restarted Xeloda after a 3 week break! My bloods weren’t right but the oncologist wants me to carry on at the same dose for now. I feel OK, just need to be vigilant about taking my temperature. I booked my flu jab for the next ‘week off’.
Sorry that your feet are starting to trouble you m1yu, I found my SEs were worse during my ‘week off’, so will see how I get on with this second dose.
HI all, Can I be one of the Xeloda Princesses too please?
I have been taking this now since November last year and reading through the posts on this thread has been very interesting. I had a break from chemo over May and June, I finished zeloda + vinorelbine combination in April, and then started Xeloda alone in July. I had little/no side effects to speak of on the combined dose, tired mostly, but on the single dose of Xeloda I too have had bad feet and hands and wondered why it was worse when I was only having one drug? One of you said that SE’x can become worse after a break so perhaps that’s it?
Anyway, I am now on a reduced dose of 1300mg twice a day instead of 1800mg, and my feet and hands are slowly improving thank goodness. I seem to be ‘lucky’ in that they don’t affect my appetite or make me feel sick -yes Nicky no help whatsoever in trying to lose some weight! Mustn’t complain though, I generally feel well, just hope it is still working. I always worry about that if the side effects are minimal/mild.
Have a good weekend all Xeolda Queens and Princesses, Sue xx
A quick question: I’m currently on day 9 of cycle 4 of Xeloda, and have horrible acid indigestion. I know I can probably go and get Gaviscon or something similar tomorrow, but does anyone know which foods/drinks are recommended to lessen this, and are there any particular foods I should avoid?
