Xeloda: here’s some hand foot advice and I’m looking for fatigue management help!

[Fifilatour]

Hello - some Xeloda hand foot news to share, which I hope can be helpful to someone! I’m also looking for advice on Xeloda fatigue - and I’ll say I’m not sure is it from Xeloda? My ascites? My current double vision? I’m about to go on cycle four of Xeloda and if we determine it’s working after my scans in mid July I want to do everything I can to stay on. Hand foot is real for me, but so far managing it. Number one rule for me: don’t pick. Everytime I have (not much!) I’ve made it worse and it takes a long time to heal. Bandaid on my right hand pointer finger during the day protects it (I don’t even want to open a bottle of water with the pressure it would take). I found a cream I use at night and in the morning. It’s amazing. Derma Vitality Hand Foot Cream. Got it on Amazon. I think it was created by an onc nurse. Super pure. That and pure petroleum jelly on the peeling skin at night and in the morning is working well for now. When I travelled recently I wore gloves the whole time. Slavered with cream inside, my hands did great! During the day I use CeraVe Therapuetic Hand Cream which my derm had recommended when Ibrance started peeling my hands last fall. Hopes this helps anyone. I’m super fatigued today - I guess that is a side effect I’m going to have figure out next (if possible). Love sharing and reading on these posts, ladies! Best, Liz P. San Francisco

[Hm50]

I’m just starting xeloda so I can’t help with fatigue or any hand foot symptoms yet but I’ll def follow your post for advise. Good luck and hoping we all get the results we need xx

[Rubyjude]

That's great advice (from someone at about the same stage as you in cycles of Xeloda) . It's more my feet than my hands that are problematic. After the initial redness, thickening of the sole and peeling of my feet, they are much better after applying prescribed cream twice a day. So for me at least the hand foot thing is no longer a problem.

And I absolutely agree with your advice NOT to pick! I too have been fatigued but wasn't entirely sure it was Xeloda-related. I had an infection during the third cycle that impacted on my levels of energy so not sure if the tiredness is still from that or from Xeloda. And my recent scan showed no progression in mets etc.

Hope you get the same positive results.

[Fifilatour in reply to Rubyjude]

Thank you, Rubyjude. Hoping we both have a long smooth ride on Xeloda.

[PJBinMI]

I've not been on Xeloda but as a mbc long timer, I'm sure familiar with fatigue! And I think many/most of those of us who are a few years into this crazy living with mbc are quite familiar with it, too. I don't sleep anywhere near 8 hours at night anymore. Last night I got almost 7 and that's a long long long time for me now. I think cancer itself takes a toll on our energy, and treatment does, too. Add stress, and it's amazing we can even still function a bit! I do most of our grocery shopping, at a small town chain grocery store about 4 miles from home and on the days I do that, I can't do much else for the rest of the day! And in the morning, just showering and dressing leaves me feeling worn out! I wear a C-pap at night. Both my husband and I got tested for sleep apnea about ten years ago and both quit breathing more often than we ever would have guessed, so now we both have C-Paps. If you snore, getting tested is a good idea. Apparently a huge percentage of people have sleep issues that can be helped by a C-Pap machine. Your primary care doc or onc can refer you for a test. (overnight at a hospital) I slept as well at the hospital as at home and adjusted to the C-Pap quickly. Both were challenging to my husband. Melatonin can help with sleep. There are CBD (or is it CDB, I can never remember) products that help with sleep. Sometimes being on sleeping pills is worth it, too! I have read that mild exercise helps, mild like taking a walk. But if somebody told me that, I'd want to punch them! LOL. I'm forgetful, too. Oh, before I go, I wanted to ask you how comfortable is San Francisco these days? I was born across the Bay in Berkeley and spent my childhood in N California. I always loved going to SF! The zoo, natural history museum, restaurants, Macy's downtown, and as I got older the art gallery. I haven't been there in a long time and know it has changed alot since the 1950s. I guess everything has, but I get especially nostalgic when I think about SF. Hope it's still a great place to live!

[TammyCross in reply to PJBinMI]

Great, except for the melatonin advice. New study says it is not good.

[Pbsoup]

Counterintuitive as it may sound, if you’re at all up for it exercise does help the fatigue.

You don’t need to run a marathon, but something physical that raises your heart beat makes a big difference at least for me. And I think it helps HFS too. Maybe it’s the blood circulation?

I am also Bay Area by the way!

P

[Hidden]

Hi Liz

My Oncologist recommended Aveeno Cream with Colodial Oatmeal. It’s great. I was in so much pain with my feet second cycle and started using it. The third and now 4th cycle it’s so much easier. My feet are still a little sore on the pressure points but there’s no peeling now thank goodness. I’m so glad your moisturiser is working. It’s so difficult sometimes to know what to use for the best.

Every 3rd or 4th night I have a problem with sleeping. I just get up and make a cup of something hot and relax. After about an hour of positive thoughts I go back to bed and sleep a few more hours. You just have to go with what your body tells you. If you are able to have a nap during the day do it. It makes sense. It’s a tough road we travel but we can support each other.

Onwards and upwards in that respect. No picking at all.🙄🙏🏼

Best wishes

Cheryl

[Kaydub]

I’ve been using Udderly extra care 20% urea cream as well as Vaseline which seems to be helping. Socks all the time and wear gloves for dishes. I’m gonna miss sandals for the summer.

Also ordered some silicon moisturizing socks from Shein. Not sure if they will work but they weren’t that expensive so worth a try. My fabric socks absorb the lotion.

[Timtam56]

Hi Francisco. I'm on ibrance and anastrozole. With denocumab monthly. I didn't know what you meant by hand foot. Then I read on. Do you mean thickening and breaking of skin on your hands/fingers and toes? Cause mine have been terrible. Particularly thumbs. Yes. If I pick I'm a goner. It takes weeks....even a month for them to settle. I've been slatgering on the creams too. Was recommended that I used this. It helps a little. But I just have to keep up the creams too. Otherwise I go mad.

[Contrarielle]

Hi, I have only had 2 rounds xeloda. Bottoms of feet bit prickly burnt at night and finger pads quite tender because I type all day at work. Bad fatigue day 11-16 second cycle but yayyy my neck node has shrunk so worth it. Good luck, be kind to yourself ♡