Help with hand and foot issues due to capecitabine

[Gorgeousness]

Hi lovely ladies. I’ve been on capecitabine for more than a year now and it’s working fabulously - shrinking liver Mets. My one issue is the condition of my hands and feet. Red, sore, and fingers curling due to the pain. Some neuropathy, but they look terrible Does anyone have any tried and trusted remedies or ideas? Thank you SO much!

[MyMiracle13]

For the feet I use Udderly Smooth Foot Cream. I don’t have much problem with hands except that the skin feels thinner and the tips redder.

[Gorgeousness in reply to MyMiracle13]

Thank you - unfortunately it didn’t work fir me! Glad you do!!

[Hidden]

I have some neuropathy, but tolerable. During the day I use utterly smooth cream constantly. My fingerprints are gone and my grip on objects is not as strong. I never used to break dishes until now. I use gloves when doing dishes and cleaning. At night I put Vaseline on my feet and cover them with cotton ankle socks and also on my hands with cotton gloves. Helps a lot.Capecitabine has been very tolerable for me after a reduced dose and 1/1 week schedule. I hope it'll stay effective for you as well.

Anja

[queeneee in reply to Hidden]

Hello Anja, I am on Cape at 1500mg twice a day.. I am interested in what your 'reduced dose' is?

[Hidden in reply to queeneee]

Hi Queeneee! I also started out on 1500 twice a day, 2 weeks on, one off. I developed terrible gastrointestinal issues at the start of cycle 3 Couldn't keep any food in. Even water made me run to the bathroom. Plus stomach cramps and pain. Onc reduced then to 1000 am and 1500mg pm. Unfortunately the gastro issues did not resolve. I then switched to the same reduced dose, but 1 week on, 1 week off. Plus a probiotic pill. All issues resolved and I can handle this schedule. Hopefully it'll work for a long time. I started Capecitabine in January of this year after Ibrance/Letrozole failed.Anja

[queeneee in reply to Hidden]

Thanks for that info! I have stomach pain (I am told, caused by acid reflux) onc would not reduce dose for that in first week.. I always take a probiotic - I also make my own kefir and drink that through the day. I presume that your reduced dose is still working?

[Hidden in reply to queeneee]

I need to learn how to make Kefir! I eat sauerkraut, but kefir sounds so much better. Good for you!My new three-monthly reality check scan is coming up this month. The last scan in March showed Stable and some reduction in lymph node size (i have mets to lungs and lymph nodes). I just hope and pray results of upcoming scan will still show stable 🙏

[queeneee in reply to Hidden]

Good luck with your scan.. I am just behind you on the Xeloda timescale.. a couple of months. Kefir is easy, buy the live grains (not dried) online put them in full fat milk at room temp overnight.. and it is ready in the morning.

[Hidden in reply to queeneee]

Wow! That sounds easy! Thanks..I'm going to check it out.

[Gorgeousness in reply to Hidden]

Try psyllium husk - it’s been my lifesaver!

[Hidden in reply to Gorgeousness]

That's fiber, right?

[Gorgeousness in reply to Hidden]

Yes. I add it to my smoothie and it fixed my stomach issues straight away.

[SeattleMom in reply to Hidden]

Hi, Anja! I’ve just started my third line of treatment, capecitabine, after 32 months on Letrozole/Ibrance, followed by 9 months on Faslodex. What is your dosage on Cap and can you share any tips?

Many thanks!

💗💗🙏🏻🙏🏻 Linda

[Hidden in reply to SeattleMom]

My third line also. My oncologist said if needed if I progress, she'll recommended Doxil. I told her I will not do intravenous chemo anymore. It's hard to give tips as we all react differently to this chemo pill.

1000mg in the am and 1500mg in the pm; one week on and one week off.

I can tell you what I personally do/take

5000iu D3. One Probiotic (L.Reuteri) on an empty stomach. I'm also on a blood thinner. Plus one cetrizine (antihistamine)day.

I eat whole food plant based mostly. I use a rebounder a few times a week and go outside often. I drink dandelion root tea to help my liver detox as my numbers were high. Some melatonin at night to help me sleep.

For my hands and feet i have experimented with different creams. Lady night I used Zinc Oxide cream on hands and feet with socks and gloves (someone had recommended this). Really worked very well! Better than anything else I use(d).

I try to avoid all stress.....tough to do in our position.

Anja

[SeattleMom in reply to Hidden]

How does the antihistamine help? Also , do you use the zinc oxide only at night?

I’m on 1000mg dose twice daily for two weeks on and one week off.

Thanks for sharing, Anja!

💗💗🙏🏻🙏🏻

[Hidden in reply to SeattleMom]

You're welcome Linda! I am allergic to many things and the antihistamine does help with the allergies. Yes, the zinc oxide only at night (just put it on my feet) with socks over it. My feet and hands feel better!

I hope you tolerate Cape well!🙏

[Gorgeousness in reply to Hidden]

Bought the zinc oxide - thank you. Instant relief from the heat and redness on my hands and soles of my feet. I’ll keep using it and report back. Thank you for your tip!

[Gorgeousness in reply to Hidden]

I owe you a beer!! You’ve solved my issues with your zinc oxide!! Instant relief. I’ve googled - most nappy rash creams have good levels of zinc oxide - but also have parabens etc. Going to try some natural ones - but the line on my wrist between normal skin and red inflamed hot dry revolting skin is gone and my hands are nearly back to normal - in a number of days. So thank you x

[Hidden in reply to Gorgeousness]

Oh wow, i just saw your comment on the xinc Oxide. Amazing right?? So happy it helps you too!Anja

[Gorgeousness in reply to Hidden]

I think this one on one off may be better. Have you had success with the drug doing it’s job?

[Hidden in reply to Gorgeousness]

Yes, this 1/1 schedule made a world of difference in how I feel. Still some side effects, but very manageable.My last scan in March showed Stable. That still was on the 2/1 schedule.

I'm going for a CT this month and that will be the tell tale on how my cancer reacts to the 1/1 schedule. Keeping my fingers crossed🤞

This morning I'm going in for labs and then today I'll know what my markers look like. They were going down before. So, today i may have a glimpse on how this schedule works.

[Gorgeousness in reply to Hidden]

How were your bloods? 🤞

[Hidden in reply to Gorgeousness]

Thanks for asking Gorgeousness!My markers were down again. Yay!! They're in the low fifties now. Not normal, but they're steadily going down. I do hope it's a sign cape is still working.

[Gorgeousness in reply to Hidden]

Down is good - no matter the number! Fabulous x

[Rbeth in reply to Gorgeousness]

I am on one week on and two weeks off. Could not tolerate a heavier schedule. Just started using Dove hand cream.

[Hidden in reply to Rbeth]

What is your dose on the 1/2 week schedule and are you feeling ok on it?Anja

[Iwasborntodothis]

I was doing well with the skin creams noted in other posts but this round (my 6th) the skin adjacent to my finger and toe nails is peeling - it’s like the medicine needs to find a way to escape if not through your feet. Plus, I’ve got a wicked ingrown nail that popped up with no warning and my eyes leak what feels like acid. Im on full dose and I’m not going to complain too much as long as my CA15 continues it’s downward trend but if I get to a normal range there im going to ask to reduce the dose.

[Iwasborntodothis in reply to Iwasborntodothis]

Oh and sorry for the rant - I think Udderly Smooth is the BEST! And…congrats on a year on Xeloda you are my hero

[Gorgeousness in reply to Iwasborntodothis]

Yes I now have a monthly date when a podiatrist - to remove ingrown toe nails and keep my nails in check. Part of it. He said he may need to remove my big toenails…. 😳😳 Not sure I’m a hero. It’s my second line of treatment - after ibrance failed after four years. It’s shrinking my liver Mets - two now undetectable!

[Iwasborntodothis in reply to Gorgeousness]

I’ve lost a few toenails due to long hikes before it’s not a big deal when they come off on their own but forcing them off sounds awful. So sorry!

[ChrisVict]

Wow! 1 year that’s great. Creme and more creme.hands and feet get turning red and dry. Gastro maybe issue not yet 1/1 week and so far working. I actually haven’t tried utterly because I have so much back up moisturizer that I am now going throughOn 4th round (28 day cycles) so hoping for the best. Love my hair plus biotin a real plus on this. So far a lifesaver literally maybe there will be another Xeloda...

[Lnlc]

Hi! I've been on metronomic dosing, meaning relative low doses of Cap, but with no break. So I take 1000 twice a day continuously. I've been on Cap twice before and did well and since I had progression on Verzenio (and horrible stomach issues) my oncologist wanted to try this dose and method. I started the end of January 2020 and so far my cancer markers have been coming down, very slowly and minimally, but in the right direction! Regarding hand/foot syndrome, onc. just had me take a week off because my feet were getting very hot and I'd developed a fissure in one heel. I was nervous about being off meds but that helped a lot. I also had a bacteria infection in a big toe, which I'm guessing was also related to the Cap. She prescribed Bactrim. Everything healed and I started back on Cap today. I don't mind having a break to ease SEs every now and then, as long as the meds keep working. I wish ALL of you the very best! Ellen

[Gorgeousness in reply to Lnlc]

I was thinking of asking fir a week off. ‘An extra week - just to reset!

[Topood]

I use lots and lots of Aquaphor on hands and feet....also occasionally use 40% Urea, though it seems to help them and irritate them simultaneously! But it makes my fingers looks less sausage-like.

[Stinkinpinktink]

Hi there. I’m sorry about the HFS. Mine was brutal till my onc changed dosing. I’m now on one week on, one week off, 1000mg in the morning, 1000mg evening. Has helped considerably. I did try a urea cream but it made my feet worse. Now I only massage in organic coconut oil, and a heel balm with manuka honey I found on Amazon. Both have now helped considerably!! Good luck!

Manuka honey heel balm

[queeneee in reply to Stinkinpinktink]

I was told by dermatologist that urea cream can be an irritant and should be avoided if you already have issues..

[Stinkinpinktink in reply to queeneee]

Yes urea cream made it worse for me! Simple and natural coconut oil made all the difference.

[Gorgeousness]

Great idea. I’ll try coconut oil - love that idea as it’s all natural. Thank you

[Lovemylakie]

I use 40% urea cream and it has made a huge difference in my hand foot syndrome. I bought it off amazon.