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

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

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

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

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

:slight_smile: 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

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

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

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

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

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

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

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…! :slight_smile:

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

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

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.

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

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

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.

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