Strange 😱foot and hand side effects while on capecitabine/Xeloda.

[Hotlantaphatz]

I am a POC (son schooled me saying it means person of color — millennials!). Well I am a Black woman with MBC. I have had unusual horrible experiences while on Xeloda! Instead of getting blisters and burns on feet and hands the bottom of my feet are darkened turning the color black ⚫️and so are my hands. Both get tingling and pin pricks. My nails are crumbling off feet and hand nails are thin as paper. It looks like I don’t care for my feet and hands. Because of this and the many other side effects (fatigue, nausea, vomiting etc) of the chemo my onc changed my treatment schedule on Xeloda to one week on one week off. Same dosage. I don’t care about the skin changes. So far I feel better. It’s scary because I am concerned if I am getting full benefits of the chemo. Onc says yes and not to stress😱 about it. Yeah right. Lol! Hope all is going great for you MBC Chics! Peace and blessings.

[ntalley8]

Hi Hotlantaphatz! Thank you for sharing your experience. My mom and I are black women and I’m a millennial as well haha. My mom was diagnosed with MBC in Dec 2021 after being in remission for 20 years. She will be turning 59 in March. She isn’t on xeloda but I’m sure she will be one day so this is helpful info to know in case she experiences similar symptoms. I pray you continue to do well 🫶🏽

[Hotlantaphatz in reply to ntalley8]

Best to you and your mom. You are a wonderful support to her!

[13plus]

Hi Hotlantaphatz, I don't have any experience with this drug either but I'd say you can probably trust your oncologist's call on the dosing because they're usually always reluctant to reduce dosage! My guess is he feels it's necessary for your safety. If I were in your shoes I'd personally be most concerned about potential neuropathy becoming bad (the tingling indicates that to me). If you lose your sensation in your feet it tends to effect your balance a lot and raise your risk of falls, and with your hands, your inability to feel properly for gripping things. Have you been on it very long?

[Hotlantaphatz in reply to 13plus]

I have been on Xeloda for 3 rounds. My onc prescribed Gabapentin for nerve issues. I am on my off week and I feel so much better! Thanks!

[13plus in reply to Hotlantaphatz]

I’m so glad to hear you feel so much better this week!

That’s not a drug I’ve heard of before, the one for the nerves, hoping it works well for you! And I’m glad others have been able to chime in with some good tips for you

[Adele_Julia]

Best to you ! There is a Facebook group that starts with the Cape.. name for Xeloda that is great !

[Bless_68]

I only had xeloda for 3 cycles as my breast cancer mutated into triple negative. I’m now on Iv chemo eribulin . I noticed that with moisturiser as soon as tingling sensation on feet or my hands is felt they ease. So I just make sure that feet and hands are always moisturised. All the best.

[Hotlantaphatz in reply to Bless_68]

thank you! I will

[Wintervt]

Hi Hotlantaphatz,

I’m a black woman and like you I didn’t experience the blisters but instead developed dark brown spots on the bottom of my feet. I was constantly nauseous and vomited everyday. After 4 months my oncologist switched me to Tamoxifen and Verzenio, which I’ve been taking for almost two years.

Kind regards,

Jade

[Hotlantaphatz in reply to Wintervt]

I am happy to hear that you are on the best med track for you. And I am happy to know that I am not alone. I guess sandal season is a wrap for me !😂

[Wintervt in reply to Hotlantaphatz]

Between lymphedema and the dry skin on my feet, sandal season is a wrap for me too! 🤣

[caw517]

I’m on xeloda also.My onc started me with the one week one week off schedule. He said studies have shown it to be just as effective and with less or no side effects. He always starts his patients this way.

So far I have seen all the new growths I’d had shrink or disappear with this treatment(I’d already been on multiple other treatments) Also I have very minimal side effects. And my hands and feet are super dry but that’s about it.!!!I’m on 1500 mg twice a day.

I hope this reassures you. And I really hope it works for you. But I’d definitely try the one week on one week off with confidence!!! Let me know how you do.

[Hotlantaphatz in reply to caw517]

thank you so much for your input!

[mariootsi]

So glad you feel better. The side effects sound terrible. You are very strong. Hope they improve on new schedule.

[Nocillo]

I hope you get relief on this new regime. The whole thing is so stressful!

[Aquadog]

Yikes! I'm so glad your doc changed the dosing schedule - your side effects sound awful. I haven't been on Xeloda, but I've heard a lot of good things about it, so I hope you can stay the course. Glad you seem to be feeling better. I'm on gabapenin, too, and so grateful for it, otherwise I wouldn't sleep - really seems to calm the nerves down. Sending hugs.

[Photo-Bug]

When I was on Xeloda, I started out at 1000mg twice a day one week on with one week off. I didn't have any problems until 6 weeks out. I was beginning to get the hand and foot syndrome but only with my feet. Doc changed me to 500mg in the AM and 1000mg in the PM still with one week on and one week off. That's the only problem I had. My tumor markers were coming down. YEA! At about 10 months out my feet were hurting so bad that it hurt to walk. That is when the doc had me stop the med. Then she switched me to Piqray. I would take the sore feet over the side effects of Piqray. That didn't last long. Onto the next drug.......

May your journey improve. Keep the hands & feet moisturized with a product containing urea. A lot of the women like the 40% products. I prefer the 10%.

Sharon

[Melpub]

This does sound like a version of hand/foot syndrome, which I had, too--I'm not a POC. I had burning, swollen red feet on Capacetabine and had to go off it. Now on Enhertu, not easy but easier than Paclitaxel.

[Timtam56]

I know nothing about Xeloda, YET! But I probably will one day. (Still on 1st line of treatment which is Ibrance and Anastrozole, as Letrozole absolutely destroyed the muscles and tendons in my hands and wrists! God gawd we put up with a lot here don’t we?)

Thank you for sharing this and keeping our knowledge and the conversations are wonderful to read.

[Hotlantaphatz in reply to Timtam56]

yep! Rollercoaster ride that I did not want to go on! Lol

[Chamisa]

Well, I’m very white —have had to always be careful not to blister in the sun— and my hands and feet have gotten dark purple on Xeloda. I just finished my first cycle, and saw my onc at MD Anderson yesterday (was not happy with my local onc and since I live in Texas, travel to Houston is not ideal but doable). I didn’t think my hands and feet were so bad because they weren’t peeling, blistering, cracking or bleeding (I constantly apply lotion). They did hurt and felt puffy. Anyway, she changed my schedule to the same as yours— same dosage, one week on, one week off, checking in with her every four weeks. She said she wanted me to hopefully be on this long term so she wanted to avoid my feet getting worse. I was surprised. But she said there have been a few studies done showing this schedule worked okay and she was confident it would be just as effective against my mets (liver, lungs, bones) as the original 2-weeks-on-1-week-off schedule. Fingers crossed she’s right.

[Hotlantaphatz in reply to Chamisa]

OMG! I love you! Your input has given me hope! Thank you very much! When I think about what we are going through I think we are very strong tough women!

[PJBinMI]

I am on day 9 of my first Xeloda cycle after E + lobular bc morphed into triple negative. My onc prescribed prochlorperazine maleate 10 mg for me in case I get nauseated. I too just 3 doses of that on day 2&3 or 3 & 4 and haven't needed it since. I'm also on a two week on one week off schedule. I already have neuropathy in hands and feet, esp feet and haven't noticed any worsening of that yet, but I guess it's still early on. I'd not thought about how our race could impact how our skin might change....thank you for being so direct about that! I'm an old white woman and glad that this group includes POC (new to me, too...thank your son for me, and save some thanks for yourself!). So much about cancer is so very individual and what works for one of us may not work for another--one more stressor! I hope you'll do well on Xeloda for a long long time!

[Hotlantaphatz in reply to PJBinMI]

Hey PJB … I was shocked to hear from my onc that my side effects of foot hand might be different. She called it hyperpigmentation where hands and feet darken and swell. Oh well! Cancer and treatments is a real roller coaster 🎢 ride.

[Chamisa in reply to Hotlantaphatz]

I replied earlier to you about how my feet had turned purple (I’m also an old white woman and purple feet are not normal!) and my MD Anderson onc switched me to week on/week off of the capecitabine.  It’s now been a few cycles later and all is good.  My last scan showed everything is better and my bloodwork numbers are better, too.  But, I’ve gotten some new “freckles”.  Freckles are not unusual for me, but basically watching them form is.  They start out as a red spot then turn brown.  I asked my doctor about them when one formed on the underside of one of my toes— obviously not due to sun exposure— and she said that the chemo does weird things to the skin, and spots can get even darker and spots that were there but unnoticeable will often get dark.  Maybe it’s related to the hyperpigmentation your doctor told you about?

[Hotlantaphatz in reply to Chamisa]

The hand foot syndrome is something to deal with. I keep moisturizing consistently. No blisters but slight burning sensation; so I use ice for relief. I am doing so well in the med; one week on one off. Oh yes the moles or whatever the are freaked me out but doc said only a side effect; but it is so many! As long as there is no progression I don’t care about them. I called them my battle scars. Lol best to you!

[Dflur]

I take Xeloda, but only every 3 months. I did try Zometa and had horrible side effects.

It’s for bone health? Right? I have MBC that has moved into my bones.

And I do take an oral chemo pill, 21 days, 7 days off.

Maybe check with your dosage? Just a thought.

[Widdershins3]

This is just anecdotal, but I've heard that the hand/foot syndrome symptoms are a sign that the drug is working. I plan to do more research and see if that's mentioned in any studies, since if I get that when I start on it in a week or so, it will really throw a monkey wrench into my life. I'd like to at least know that there's solid benefit to Xeloda. Best of luck to you.

[Sister3nkc]

Hello Sweet person,OWW here, (Old White Woman) Xeloda is no fun! Beginning week 2 of 2nd cycle and my hands and feet really hurt. The palms of hands and soles of feet are red, feel tight and I have a burning sensation. Hope this isn't an accumulative issue 😕.

I hope the change to your medication schedule helps with your side effects.

Namaste 🙏🏼