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Feet and hand problems with Xeloda

48 REPLIES 48
Kay123
Member

Re: Feet and hand problems with Xeloda

Really glad to hear that you are now getting a response to xeloda, Belinda. Funny how we are all different - have posted elsewhere about how I have had a spectacular drop in my tumour markers after just the 1st 2 cycles. Mind you they started at over 400, so have a fair way to fall, compared with yours! Are now down to about 165 (just had a graph this last time rather than the actual figures).

I've not yet had a scan so don't know what my tumours (in the liver) are doing but am just hoping that they are shrinking in line with the tumour marker drop!

Was also wondering, Spike, how the laser treatment had gone.

Love to all

Kay x

Gerry69
Member

Re: Feet and hand problems with Xeloda

Thanks Belinda - hope the Xeloda keeps working for a very long time! Geraldine

belinda
Member

Re: Feet and hand problems with Xeloda

Hi Geraldine, it's invasive ductal bc, I was diagnosed in 2003, by fracture, no surgery as stage 4, bone mets, from time of diagnosis. Have, so far, no other organ spread.

Gerry69
Member

Re: Feet and hand problems with Xeloda

HI Belinda - you must be please. Can I ask what type you bc is? Geraldine

belinda
Member

Re: Feet and hand problems with Xeloda

Hi..just sharing my latest Xeloda news! I've just started my 5th cycle and at last the treatment seems to have kicked in! My markers were rising 3 points each cycle but have stopped and the primary tumour's started to shrink. Thought I'd post in case anyone else has had a slow response...it can take a while to work. My CA15-3 is 41 so I'm quite happy and hope it may start to go down now although stable is good too. Belinda..x

Marilf
Member

Re: Feet and hand problems with Xeloda

Hi again, Maddison -- I've been on a low dose of Xeloda for the last three years, after two dose reductions (started on 2000mg x twice a day, then reduced to 1500mg x twice a day) in my first 18 months. My current dose is 1000mg x twice a day, two weeks on and one week off -- and I'm going to ask my onc team about your onc's concerns about having an AI and Xeloda at the same time. I'll let you know what they say about this.

Marilyn x

maddison
Member

Re: Feet and hand problems with Xeloda

Hi spike, Marilyn, Jenny and every one else

I think that because I have seen so many women on this site who seem to be having Xeloda long term that I assumed it would be the same for me. although at the back of my mind I am sure the ONc said thae advantage of the drug is that you can play around with the does and can have it long term (but my memory plays tricks and I might have dreamt that) Wish I had written down what she said. I see her in 2 weeks so will ask her about it. I would just feel happier if i was taking something long term which was helping. I live in Darlington and have my treatment at Stockton.

Maralyn - what dose are you on? I also asked my onc about Aromasin which you are also on and she said that they work against each other but obviously your onc doesnt think that. It's so confusing.

spike - how did your laser treatment go?

Spike
Member

Re: Feet and hand problems with Xeloda

Hi Maddison

The pain has improved in my leg/hip but not as much as I would have hoped after having the radiotherapy two weeks ago. I've been on Tramadol for the last week but it does make me quite tired. The pain killers only take the edge off the pain but don't get rid of it completely. Hopefully there will some more improvement over the next few days.

The laser treatment to the liver is on Tuesday.

Which link have you had problems with?

I'm hoping to continue with Xeloda for as long as it works but this is my second time with it and I did 8-10 cycles the last time. It worked well for me but I was taken off it so that I could come back to it at a later date if necessary.

Take care.

Spike

Marilf
Member

Re: Feet and hand problems with Xeloda

Hi again Maddison

What a slap in the face, to be told you're only having six courses of Xeloda when you were expecting to stay on it longer-term. Just shows the many differences between our treatments around the UK and elsewhere, and between our oncs, who all seem to use this drug in a different way. I get my Xeloda on the NHS, prescribed by my onc and dispensed from the pharmacy at the Christie Hospital in Manchester. I get my other BC mets drugs (Bondronat & Aromasin) via NHS prescriptions from my GP. And buy my Vit B6 from Holland & Barretts, as they sell it in 50mg tabs where other shops only do 10mg.

I wonder if it might be useful for you to make an appointment to see your onc about stopping/staying on Xeloda, as your experience of her team is that she and her registrars seem to have "different opinions" about treatment issues.

Sending you strength to cope with all of this!

Marilyn x

Jennywren
Member

Re: Feet and hand problems with Xeloda

Hi again!

I am even more concerned about your onc after reading this post. There is a clinical trial going on to ascertain effectiveness of Vit B6 for hand/foot syndrome so how she can say it doesn't work, when the jury are still out, is puzzling. I was on it for a while and I have to say that I don't think it did much for me but I think others have a different take on it.

One thing I would add, is, if you want to try it, it is cheaper to buy it in Holland & Barrett or similar, than to get it prescribed (if you have to pay for prescriptions, that is). You need the 50g tablets, one to be taken three times a day.

Jenny.

maddison
Member

Re: Feet and hand problems with Xeloda

Hi everyone

Can I ask those who are on Xeloda long term if they are receiving this through private healthcare or on the NHS ( I will be starting a new post to ask others from the site as well). I saw the registrar this week and asked about the dose I would be on for maintenance and she said that they dont give it for maintenance and that I would only be having the 6 cycles. I feel really flat now as after reading all the positive posts on hear from women who have been on it for years I assumed that that was the course for everyone as long as it was working.

She also asked how my feet and hands were and said she would prescibe me vitb6. I said i had asked the Onc about this after my 1st cycle and she said it didnt work. she just looked at me and said she would prescribe it if I wanted it as she found it worked for some. So not only do things vary around the country they vary within the same team.

spike - how is your pain. I am supposed to be having radio to my hips following my last cycle. How bad was the pain before your radio. I take MST 30mg bd plus paracetamol and voltarol. the pain and stiffness varies from day to day. Some days not really a problem other days I walk very awkwardly and get pain down my thighs. Hope your liver treatment goes well. I e mailed Germany and received e mail straight back but then sent more information and havnt heard anything? I tried the link you posted but coulndnt get it.

Maddison

Belinda48
Member

Re: Feet and hand problems with Xeloda

Spike

I hope you are feeling better and thank you for taking the time to reply. I will certainly look at that web site. When are you going off to Germany and how did you hear about it originally.

Beli x

Spike
Member

Re: Feet and hand problems with Xeloda

Hi Beli

Sorry to take a few days to answer your question regarding the laser treatment to my liver mets but the radiotherapy I had to my hip 9 days ago has completely floored me. The pain is even worse than before, I'm just hoping that this is normal and it will settle down soon.

Anyway back to the laser treatment, I'm having it done in Germany and it is called LITT (Laser-induced Interstitial Thermotherapy) where the tumours are heated. The heat causes the destruction of the tumour tissue and the edge around it. I had asked my Oncologist if she knew of anywhere in the UK that this could be done and she was very vague, in otherwords, not very helpful. You may be interested in a news item that I saw on my local station (Meridian & Thames Valley). The article is celebrating 60 years of the NHS and one particular item caught my attention. It is about an English pioneering liver surgeon called Merv Rees who specialises in liver cancer. This groundbreaking surgeon has developed pioneering treatments now used throughout the world which he learnt in Germany. It is very interesting and quite moving because Mr Rees seems to be very dedicated in saving peoples lives. The news piece does say he works with patients who have secondary tumours in their liver.

Here's the link (which I hope gets posted):

http://info.itvlocal.com/NHS60.shtml

Spike
xx

Belinda48
Member

Re: Feet and hand problems with Xeloda

Kay

Sorry only just seen your post from 14 June.

I have asked the onc if I can have a break every so often sometimes for hols they have agreed and this I found is good for my feet and hands. Every cycle of Xeloda seems to affect me differently sometimes my feet are worse than others times and I don't know why.
The creams the nurse gave me were ok but nothing exceptional I'm trying double base at the moment might try some others creams that have been mentioned on here.

Pinkdove - I had a fantastic time at Wimbledon (centre court) we treated ourselves to a Pimps first thing found our seats and sat back and enjoyed the tennis, my friend had some binoculars so we kept looking who was in the royal box. Had another pimps before we left just to chill us out before taking the train home. Like you I am trying to make the most of every opportunity. Have a great time in France.

Beli x

ForumMember
Member

Re: Feet and hand problems with Xeloda

Hi

I think part of my problem is that I was seriously ill with my liver mets 2 years ago and given 3 months to live (after living with them for 4 years) and it's as if I've been given a new lease of life and am determined to make the most of things while I still can.

It's as you say though Kay - it's about pacing yourself! We're on holiday from this Friday lunchtime for just over two weeks and really looking forward to it. Our friends have a place in South of France so travelling down with them and they've even ordered me a special mattress as I find hard beds and my spine just don't mix!

Hope you enjoyed Wimbledon yesterday Beli!

Belinda48
Member

Re: Feet and hand problems with Xeloda

Hi All

I am taking Xeloda and have been for 2 yrs I was told never to take it on an empty stomach as it can upset you, I also have been taking B6 tablets and cream, tabs help your hair aswell as your hands and feet.

Really good news Maddison and Kay.

I think with us all each onc team treat us differently as long as it all works and we can check with each other thats great.

Spike how come they are zapping mets and where are you having your treatment as would love to know about the laser treatment.

Beli x

Pinkdove sorry to hear your suffering I went to Wimbledon yesterday had a great time but feel a bit shattered today.

Spike
Member

Re: Feet and hand problems with Xeloda

Hi Maddison

That's great news from the CT scan, long may Xeloda continue to work. I started on it nearly 2 weeks ago and my Onc said that she would start me on a lower dose of 1650mg twice per day and so far so good. Hardly any side effects and no sign of the hand and foot syndrome. I do continue to take the Alpha Lipoic Acid. This is my second time taking Xeloda, the first time was in Dec 2005 for about 6 months. I started at a higher dose then and got the hand and foot syndrome within 8 days (I didn't know about the ALA at the start of the chemo).

Do you have liver mets? I have liver and bone mets but the liver mets are reducing and I'm having laser in two weeks to zap them.

Good luck with everything.

Kay123
Member

Re: Feet and hand problems with Xeloda

Hi Maddison

Delighted for you - really good to hear that xeloda is working for you too. I'm on 2000mg twice daily - and am taking 100mg twice daily B6.

Pinkdove - sorry to hear you're paying for your day in Leeds. I find it so hard to "pace" myself - when I feel well, I just want to get on with everything! But know now that that is not the best way to deal with things. Hope the spine feels better soon.

Kay xx

debsincornwall
Member

Re: Feet and hand problems with Xeloda

Hi Maddison,
really good news enjoy your wine.

Love Debsxxx

maddison
Member

Re: Feet and hand problems with Xeloda

Hi everybody.

Good news from ct scan. Shows reduction in deposits in liver and healing in bones which must be spine and ribs and no evidence in lungs (lungs have been clear for about 6 mths now. also tumor markers reduced. go for Zometa on thurs so will find out exactly what my blood results were. really pleased. Having a glass of wine tonight to celebrate.

Onc hadnt heard of Alpha Lipoic Acid but said I could take it so will order some. she said that the toenaill problem could be a residual problem from the taxol but could also be due to the Xeloda.

We discussed radiotherapy and I'm going to wait until I have had my full 6 cycles and then have some.

Kay graet news about your tumour markers. You must be thrilled. What dose are you on. I'm taking 1800mg twice daily.

Spike - Just shows you that there is no set criteria for waht we have. sometimes I think they make it up as they go along.

Pinkdove. Hope your spine improves after your radio. Mine is bothering me especially in bed. Due my Zometa thu so will see if that makes a difference.

Marylin - I hope i will still be posting i 4 years time. Keep up the good work

Love Maddison
xx

ForumMember
Member

Re: Feet and hand problems with Xeloda

Hi Maddison

I've now had every verterbrae in my spine blasted with radiotherapy (the latest was to the base and also the top of my spine/lower neck region). I was supposed to have had it to my pelvis when I was first diagnosed but they forgot! It doesn't seem to trouble me as much as it did though in that area.

My concern now is I'm not sure how strong they've blasted each of the areas and whether I would be able to have any more - it's not a question I've asked yet! I've just changed to Zometa though and am hoping that this will stabilise it even more.

I was up in Leeds all day yesterday and did quite a bit of walking around and unfortunately I've paid for it today!

x

Spike - I was told that I had to stop the chemo because it would be too much for my body (it might be because of the dose I was having as the radiotherapy really floored me this time). I had my usual week off chemo which was when I had the radiotherapy, went another week with being off it and then started it all again. I think you're right, it does seem to be down to each individual oncologist on what they think is okay or not for you.

Marilf
Member

Re: Feet and hand problems with Xeloda

Hi all

Maddison, fingers crossed for some positive scan results, and that the Xeloda is doing the job for you. I've taken 100mg a day of Vit B6 since I started Xeloda 4½ years ago, as recommended by my onc team, but I'm on such a low dose of Xeloda now (1000mg x twice a day) that I'm not sure if the B6 is actually doing anything for my hands & feet, or even necessary. In fact, I'm not even sure if the Xeloda is necessary, as it's such a low dose and I've been "stable" for a while, but my onc team and my partner really don't want me to stop taking it, as "if it ain't broke, don't fix it" . . . . . so I'm on what feels like my millionth cycle of it from Wednesday.

I have had a few problems with my toe- and finger-nails throughout my Xeloda-taking time; mainly little infections in the corners of my big toenails, and they have both "lifted" a bit from time to time as well, but neither of them have come off.

Spike, I'm glad to hear you're doing well in your first cycle of Xeloda -- I didn't have any side effects for the first few cycles, and hope that's the same for you.

Kay, fab news about your tumour markers dropping -- long may it go on! And I'll be very interested to hear more about acupuncture for chemo side effects, once you've had some treatments.

Take care, all!
Marilyn xx

Kay123
Member

Re: Feet and hand problems with Xeloda

Hi all

Interested in fact that you've been told B6 doesn't help with oral xeloda, Maddison - I have had some trouble with my feet on the last cycle and onc has put me on 200mg of B6 a day. Says it will help heal them but doesn't prevent the hand and foot syndrome. Also being referred for some acupuncture which evidently works well for some, but not all. WIll let you know how I get on with that.

Think your problem with the toe nails might indeed be due to the taxol, Maddison. I lost all but 2 of my toe nails when I had taxol and some of them came off after I finished (though not sure it was so long after as for you). Just growing back now some 6 months later - so definitely don't want to believe xeloda could cause them to drop off again!! LOL

And the really good news for me is that onc had my tumour marker results from after the 1st cycle when I saw him last week - markers had been over 400 (hadn't dared ask just how high) but had come down to 306. Have had another cycle since then and on a slightly increased dose, so am really very hopeful that it's working well for me. Scan after this next cycle, so we shall see what that shows. Hope your CT results are equally promising, Maddison.

Glad to hear your first cycle has gone well, Spike. Like you I tend to feel nauseous if I haven't eaten recently.

Where in the Lakes were you, Maddison? My parents used to live by Derwentwater (outside Keswick) and now live in the Eden Valley (east of Penrith). I absolutely love it there.

Love to all Kay xx

Spike
Member

Re: Feet and hand problems with Xeloda

Hi Maddison

Have been taking the Xeloda for nearly 2 weeks now without many side effects. I did feel sick one day last week and I think it was because I hadn't eaten very much before I had my evening tablets and I think the Xeloda upset my almost empty tummy. I also forgot that I was recommended to take Omeprazole whilst taking Xeloda as it is a stomach protector. Since starting these I haven't had any further problems. It may be too early yet to assess whether I'm going to suffer with the Hand and Foot syndrome but so far so good.

Regarding your comment about radiotherapy and Xeloda, I had radiotherapy to my hip on Friday as I have a hairline fracture. I wasn't told I had to stop taking the Xeloda so this is news to me. How can Oncologists have such differing ideas? I'll have to ask at my next Oncology appointment but it's a bit late now!!

Spike

maddison
Member

Re: Feet and hand problems with Xeloda

Have had alovely relaxing week in the lakes so havn't posted for a while. Seeing Onc tomorrow re results of ct scan to see if Xeloda is working. fingers crossed. will ask her about Alpha Lipoic Acid. Meant to last time but forgot my piece of paper with it written on (would forget my head itif it was loose). I have been using Eucerin and it has really helped both hands and feet. problem I have at the moment is that both my big toe nails are coming off! Has anyone experienced this. I was aware that it was a side effect of taxol but not of Xeloda. I finished taxol in March so maybe its from that?

Spike how are you managing with the Xeloda? I really hope that it is working for me as apart from the hand/Feet problem I havnt had any side effects.

Pinkdove. To what area did you have your radiotherapy? I have duscusse having some to pelvis as I get a lot of pain in hips and thighs but ONc said I would not be able to take my Xeloda for about 6 wks. You said you only missed a week.

Marif - I aked my Onc about B6 and she said it doesnt work with oral chemo(Xeloda) just the IV vwersion ( 5 FU). Do you think it has helped you?

Maddison

Spike
Member

Re: Feet and hand problems with Xeloda

I'm starting Xeloda/Capecitabine tomorrow. I've also been taking Alpha Lipoic Acid for 2 years now, ever since I was on Xeloda 2 years ago so I'm hoping that the hand and foot syndrome doesn't get too bad. I'm taking 600mg per day. I'll have to let you know how it all goes with the Xeloda.

ForumMember
Member

Re: Feet and hand problems with Xeloda

Hi Jenny

I've been on Xeloda for 21 months without a break (except for one week when I was having radiotherapy in March). The only real build up I've found is I get tired more but then again I'm doing a lot more so it's hard to know whether it's from the chemo or just me!

I've found Xeloda to be the best chemo I've been on as well. I've had FEC and Pacitaxol and both impacted quite a lot on my day to day living whereas I don't find that Xeloda does but I have been lucky in that I've escaped a lot of the hand and foot side effects.

Seajen
Member

Re: Feet and hand problems with Xeloda

Hi everyone

I have not posted any messages for awhile busy I guess! I am now on my 4th cycle of xeloda. After third cycle the scans showed good shrinkage on my tumours in the liver - thank goodness - it has been a tough 5 months as previous chemo did not work. During my 2nd cycle of xeloda I developed the foot syndrome within hours and my feet blistered - I could hardly walk. I rang the cancer team in the hospital straightaway at w/end. They told me stop taking xeloda straightaway within 2 days my feet were much better, I am now on a lower dose of xeloda 2000mg (it was 2300mg).
I have found my lifestyle is just about back to normal on xeloda, I am back to doing some cycling and reasonable walks 6 to 10 miles! I am taking care of my feet though. The creams I have been using is E45 and DiproBase. The hospital has provided these.
I believe I will be on xeloda long term - if you have been on this drug longterm have you had any side effects that have built up? My onc. says he might give me an extra week off now and then if I want to get away so skiing again next winter is my aim.
After the awful taxol chemo, xeloda so far has been a very livable.
Jenny

maddison
Member

Re: Feet and hand problems with Xeloda

Hi everyone
I saw my Onc today but forgot to take my piece of paper with Alpha Lipoic acid on and as I have no memory all I could remember was the acid bit. See her again in 2 weeks so will ask then. she discussed
b6 but said it doesnt work with the oral medicsation just if receiving the 5fu iv. My current dose is 1800mg twice daily. started on 2150mg twice daily but was reduced after having very sore mouth. Havnt had that problem since reduction. fingers and rt foot verysore at moment. Onc said she didnt want to reduce it any more which I agree with. Must get some of the Eucerin cream to try. at the moment I have two fingers and 1 thumb taped up with a dressing. ( look as though I have the lurgy!!

Start 4th cycle on thu. Lft's have reduced slightly and tumor markers seem stable. Hvae CT scan on fri so fingers crossed.

Love maddison

Kay123
Member

Re: Feet and hand problems with Xeloda

Thanks Belinda and pinkdove for your help - will try out the Eucerin cream and flexitol and see which one works best for me.

Don't know what is happening yet with my tumour markers, Belinda, - they were shooting up at an incredible rate so if it has held them, that would be good. Secretly hoping though (like you) that they will have dropped. Are you due a scan sometime soon to check things out?

Thanks again K

ForumMember
Member

Re: Feet and hand problems with Xeloda

Hi

I'm on 1650mg twice a day but don't have the foot and hand syndrome (get dry feet and hands but no cracking). My oncologist said I've not reacted in the normal way that most do! I've now been on it (without a break) for 21 months and it's keeping my liver stable.

I've noticed though that I have no cuticles and from time to time I get little bits of skin (threads) around my nails. I tend to use Flexitol but it sounds as though there are quite a few around and I think it's what suits you best.

belinda
Member

Re: Feet and hand problems with Xeloda

Hi Kay..I'm now on 2,300mg dose, 3rd cycle, so far my tumour markers are not showing any great news, stable but was really hoping for a decrease, I hope Xeloda's working as I'm tolerating it well..so far! ..I normally wear Birkenstocks all summer long but have had to stop as my feet started to get a little sore..the best footwear for me at the moment is good old Monsoon flip flops. Wearing cotton socks at night after you have put lots of cream on is said to help too..(a tip I had from a long time Xeloda user). I've found Eucerin cream is much more effective (for me anyway) than udderley.
Good Luck..x

Kay123
Member

Re: Feet and hand problems with Xeloda

Hi

I'd also be really grateful for people's advice re sore feet on xeloda. Had no problems during the 1st cycle but now have sore peeling feet (only small areas but obviously don't want it to get worse). Have been using udderly smooth but haven't been advised to take vitamin B6 or the Alpha Lipoic acid. Also seemed very much worse last week in the hot weather than the last few days - is that what usually happens?

Interested that you say, Beli, that your feet get sore "from time to time". Do they recover without you coming off the xeloda for a while and without reducing the dose? And how have you got on with the different creams the nurse gave you? Am keen obviously to stay on the highest dose I can manage (started on 3/4 dose for me but he put it up after the 1st cycle to 2000 mg which is 5/6) but don't want to be hobbling around all the time!

Many thanks

Kay xx

jumpforjoy
Member

Re: Feet and hand problems with Xeloda

Hello, I have been following this thread as I am suffering from the hand foot syndrome with Xeloda. It got so bad I was taken off it for a while. I am now back on it, but taking same dose 1650mg twice a day (80% of full dose), but for only 10 days rather than 14. I am taking vitamin B6 (prescriped by oncology team). I am also using the udderley smooth cream and other foot creams. I am also limiting my activity as I used to go for long walks, do line dancing etc, but my feet can't take it anymore!. Anyhow, sorry to ramble on - my question to anyone - but particularly Maddison (have you asked your oncologist about it yet?) is has anybody found the Alpha Lipoic acid useful. I have just started taking it for the past 10 days and am not sure yet whether it is having any affect. I have not mentionned it to my oncology team. Also what dose are people taking? My tablets are 300mg and I take one per day. I would be grateful for any comments.

LottieLemon
Member

Re: Feet and hand problems with Xeloda

Hi, I am on my eighth round of Xeloda and have been trying various creams - ends of thumbs and heels seem to be the worst areas. When heels were split I used Dr Scholls Heel Repair cream (also works on thumbs!). This worked well but was a bit expensive. I got a prescription for Double Base cream last year when I was on Taxore and that helps too.

Lottie

Marilf
Member

Re: Feet and hand problems with Xeloda

Hi all

Maddison -- so sorry to hear you've been having hand/foot problems, but you were started on a fairly high dose, so it was probably inevitable -- hopefully, your dose reduction will help reduce these side effects. As others have said, "Udderly Smooth" seems to work well for us (I've been on Xeloda for 4½ years after bone & liver met dx), and I also used Eucerin for a while as well, and also the L'Occitane range, with shea butter -- one of the many nurses I've bumped into over my mets "career" advised me to change creams from time to time, as our skin gets used to whichever one we're using after a while. I'm on such a low dose of Xeloda now (1000mg x twice a day) that I don't have the same level of problems as at the beginning, when I was on twice my current dose. Have you tried Vitamin B6? I was recommended to take 50mg x three times a day to help with the hand/foot problems, but I know this doesn't work for all of us.

Kathryn -- yes, I would get creaming now, although I didn't have any side effects until I'd had two or three cycles. Like all chemo treatments, Xeloda's effects are cumulative, which is why we can sometimes/often feel worse in our week off than during the fortnight of tablet-gobbling.

Debs -- as much as I love my Crocs (I have a pair of red Mary-Janes), I sometimes find that their little internal bumps irritate the soles of my feet -- maybe I should try wearing socks with them? I know Crocs come in a "diabetic" range, which I think has a soft inner sole, but I've never seen them in shops.

Hi Belinda -- glad it's all going pretty well for you, and hope you're getting enough rest when you need it!

Marilyn (the Xeloda Queen) xx

belinda
Member

Re: Feet and hand problems with Xeloda

Hi Kathryn, yes my chemo unit recommended I start creaming my hands and feet straight away..and I was started on a low dose. I've found the best cream so far is Eucerin cream, hand and foot, available from Boots. Good Luck with Xeloda..this is my first chemo, I have bone mets, so far it's been okay, I've had 2 cycles with the dose being upped each time as, so far, I've had no side effects.
Like others here I've found I've felt well whilst taking the tablets but have now started to feel a little tired on my week off. Belinda..x
Edited by me..sorry I didn't see I'd already replied to this thread so have just repeated myself...! 🙂

KatieP
Member

Re: Feet and hand problems with Xeloda

Hi
I have just started Xeloda, would those of you who have been on it for some time recommend creaming hands and feet from the start before problems aride ?
thanks Kathryn

Belinda48
Member

Re: Feet and hand problems with Xeloda

Hi Maddison

I have been on Xeloda for 2 years and my feet and hands do get sore from time to time it seems to vary as to when this happens sometimes the second week or third week of cycle.

I have tried the Udderly Smooth and worked well to begin with but I think maybe my body has got use to it. The ladies on this forum seem to have tried several different creams so I am experimenting. The nurse at the hospital also gave me some different creams to try so will let let you know which ones I think have worked for me.

I also took pineapple for my mouth if it ever got sore, although seems to be ok now.

I hope your feet heal soon.

Beli x

maddison
Member

Re: Feet and hand problems with Xeloda

Thanks Dawn will by some udderly smooth and spike I will ask my Oc if it is ok to take the álpha Lipoic Acid. Blisters are slowly healing. the problems seem to occur on the week off treatment rather when taking the tablets. Belinda. My mouth was sore after the first cycle but since dose reduced havnt had that problem

maddison

Spike
Member

Re: Feet and hand problems with Xeloda

Hi Maddison

When I was on Xeloda, I also had the hand and foot syndrome but I was recommended to take Alpha Lipoic Acid by an Oncologist and it worked wonders. This can be found at Agestop on the internet. It's definitely worth having a go. I'm starting back on Xeloda in a few weeks and to be honest I haven't stopped taking the ALA in the last two years so it will be interesting to see how my body copes with the Xeloda and whether the hand and foot syndrome kicks in again.

Best wishes.

Spike

belinda
Member

Re: Feet and hand problems with Xeloda

Sorry Maddison the link to the udderly smooth cream has been removed from my message..I can send it by a private message if you need it..x

belinda
Member

Re: Feet and hand problems with Xeloda

Hi Maddison, I'm half way through my 2nd cycle of Xeloda..I was started on a low dose, 1500mgs and am slowly having it increased, now 1800mgs.
I was advised to cream hands and feet...the uddely smooth cream is good, here's the link.. so far the best cream (I've found) has been Eucerin foot cream, available at Boots and I'm also using the Body Shop Hemp cream, hand and foot.
Another thing..if you haven't already do use a gentle mouth wash a couple of times a day..another common side effect are those painful mouth sores.
I got these tips from someone who has been on and off Xeloda for 4 years now..hope it's working as well for us both. Belinda..x

dawnhc
Member

Re: Feet and hand problems with Xeloda

🙂 my onc at Marsden would reduce the dose when this symptom got bad Maddison which is why i suggested you tackled her. Some recommend a cream called udderly smooth and have found that effective when all others have failed. I will pm you the website.

dawnhc

maddison
Member

Re: Feet and hand problems with Xeloda

Thanks for your comments.

Have seen gp who has given me some cream for general creaming of feet and hands. Not infected so have to wait for it to heal itself.
Dawn - saw onc yesterday abd she said it was the commom side effect of the treatment. didnt suggest anything!!

Madddison

debsincornwall
Member

Re: Feet and hand problems with Xeloda

hi Maddison
I know they look a bit silly but I wore crocs and they worked for my feet.
Love Debsxxx

ForumMember
Member

Re: Feet and hand problems with Xeloda

Hi Maddison

If you wish to speak to one of specialist nurses on the helpline for advice on the side effects you have, please feel free to call on 0808 800 6000, it's open weekdays 9am-5pm and Sat 9am-2pm.

Kind regards
Lucy

dawnhc
Member

Re: Feet and hand problems with Xeloda

Hi maddison,

I think this is something your oncologist needs to know about pdq - ok the gp may deal with the infection but as the cause is the xeloda and needs reassessing. When I was on ECF it was the fluorouracil (5-fu) part that causes the plantar palmar syndrome which is what you have. Xeloda is just a different form of 5-FU.. I had to have reductions in dose on the ECF but when the xeloda started causing the same problem a few years later i was taken off it straight away.

dawnhc

maddison
Member

Feet and hand problems with Xeloda

Hi everyone

I have been taking Xeloda for 2 cycles initially 2150mg and now 1800. I had very sore mouth with the first cycle hence the reduction in dose.

I now have blistered feet and keens on my thumbs. Going to see gp as I think my foot is now infected. have been putting on loades of cream to prevent it but it didnt help. Having to hobble around as very painfull.

Any suggestions.

Maddison