Treatment change to Xeloda - chemo 💊 - SHARE Metastatic ...

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Treatment change to Xeloda - chemo 💊

Hotlantaphatz profile image
39 Replies

I have started the first round of Xeloda a chemo pill 💊. Taking 4 pills twice daily for 14 days then 7 days off. So far so good, none of the side effects as of yet. I am prepared however. Our hope 🙏🏾 is that it will reduce and/or eliminate my cancer met tumors to lung cavity and liver. I would love to hear from others who are on this drug. I will keep you posted! Stay strong 💪🏽!

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Hotlantaphatz
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39 Replies
Best521 profile image
Best521

Best of luck and hope for a good outcome. Yes please keep us posted. Xeloda will probably be my next step when the time comes. Many seem to do well with it.

Hotlantaphatz profile image
Hotlantaphatz in reply toBest521

I will keep all posted

Bettybuckets profile image
Bettybuckets in reply toBest521

me too my next step so we will all watch closely here

AnnieAppleseed profile image
AnnieAppleseed

Make sure your dose is 2000 mgs, not 2500. Many report neuropathy at higher (sadly approved dose). I just posted a statement from the San Antonio Breast Cancer Symposium about the harms of the MTF Maximum Tolerated Dose. That's how Xeloda was originally approved. A problem for many.

Hotlantaphatz profile image
Hotlantaphatz in reply toAnnieAppleseed

yes it is 2000mg. Thanks for input.

Silver126 profile image
Silver126

I was on Xeloda for seven months with very soft side effects. So much better than Ribociclib +letrozole!!! Unfortunately it didn’t work longer…

Ntash01 profile image
Ntash01 in reply toSilver126

So sad to hear that as I am about to commence my 7th cycle. If you don’t mind me asking- What is your treatment plan now? Having MRI today, so 2023 will commence knowing which directions things are going, but I’m not letting negative thoughts dampen the holiday season….’tis the season to be jolly after all 🙄!

Nx

Silver126 profile image
Silver126 in reply toNtash01

Each of us is different, Xeloda stopped working with me due to liver progression. At the moment I’m on IV chemo, Caelyx and again with little side effects…

Bettybuckets profile image
Bettybuckets in reply toSilver126

so happy to hear with little side effects

Bettybuckets profile image
Bettybuckets in reply toSilver126

and that what did you go onto? Was it much harder side effects?

Silver126 profile image
Silver126 in reply toBettybuckets

I don’t know if I understood your question. I’m now on IV chemo Caelyx (doxorubicin) with no particular side effects. After Xeloda I was on Everolimus + exemestane for two months but it didn’t work enough

KMBL_ profile image
KMBL_

I’m in my 15th month on Xeloda after being on Ibrance and Letrozole for two years. I’m also on Faslodex. I have it from skull to femurs in all bone and bone marrow and in my stomach. It has helped a lot with being able to eat again. I have minor hand and foot. I weigh 126 pounds and take 3,000 mg per day, 7 days on and the. 7 days off.

Hotlantaphatz profile image
Hotlantaphatz in reply toKMBL_

Thanks for your feedback! It helps! My beat to you

Bettybuckets profile image
Bettybuckets in reply toKMBL_

I just started 3 pills morning and then 3 nights is that usual?

KMBL_ profile image
KMBL_ in reply toBettybuckets

Hi. Yes, that’s what I take. It’s 500 mg each for a total of 3,000 mg per day. I do 7 days on and 7 days off.

Bettybuckets profile image
Bettybuckets in reply toKMBL_

I’m in trouble, I have blisters on both feet after one week! I did too much friction from playing stupid pickle ball. I thought it would take a few weeks to kick in. I read all the stuff about moisturising but now I have open wounds should I put cream on it? Should I use Blister Band-Aid like Moleskins? It doesn’t say. I am afraid I blew my chances to stay on cape. Do you have any suggestions?

KMBL_ profile image
KMBL_ in reply toBettybuckets

I don’t think I’d put cream on the open sores. It will really sting. Have you been eating a lot of food with folic acid? I have had cuts, like someone has slit me with a knife, but no blisters. I would call your doc and let them know. They may be able to prescribe something. You definitely don’t want an infection. It may take time for them to heal. I would either ask for a dose reduction or see if you can do a 7/7 schedule to see if that helps. I’m so sorry that happened.

Bettybuckets profile image
Bettybuckets in reply toKMBL_

All good advice. I hope that the feet won’t get infected. Especially because the lymph node on my neck has finally noticeably shrunk.., which is probably a good sign.

KMBL_ profile image
KMBL_ in reply toBettybuckets

That does sound like a good sign. I hope you’re able to stay on it. 💕

LDR1 profile image
LDR1

Hi Hotlanta, I’m starting Xeloda now too (today will be my first day) and it’s encouraging to hear the stories in the replies. Wishing you the best of luck on this drug!

Hotlantaphatz profile image
Hotlantaphatz in reply toLDR1

Wishing you the best as well!

Bettybuckets profile image
Bettybuckets in reply toLDR1

I started xeloda about 2 weeks behind you. How are you going? I am in my 2nd day off. Yesterday I could not walk… I played pickle ball and of course got blisters.

LDR1 profile image
LDR1 in reply toBettybuckets

hi there - I was definitely feeling some foot pain / sensitivity / pre-blisters by Day 14 (my fault for wearing fancy shoes on Christmas 🎄) but all that vanished during the week off. Otherwise feeling good. Starting cycle #2 on Monday! 🙏🏼🙏🏼

Bettybuckets profile image
Bettybuckets in reply toLDR1

I have blisters that are def my fault too… played pickle ball a few times during my very first week. I am not sure what to do… I could not even walk around my house on day 7…i literally had to use a wheel chair to go into a store. I felt so debilitated and worried about failing cape… and also I was meant to go back to NZ in 3 weeks. I thought How could I manage to get into the plane being barely able to walk?

LDR1 profile image
LDR1 in reply toBettybuckets

dear, so sorry to hear this, and I see in your other comment above that you have open / broken blisters now. No fun, especially when you’re hoping to travel soon! Hope you can rest & heal them, maybe your Dr will let you take a week off so they can recover. I’d avoid putting anything adhesive (like moleskin) on / around the blisters. Just keep them clean & give them air so the broken skin can dry out and heal over. You can use salve or neosporin to keep the skin supple.

Bettybuckets profile image
Bettybuckets in reply toLDR1

very helpful…

LibraryGeek profile image
LibraryGeek

I was originally on 2000 twice a day, but my oncologist reduced it by 10% when the hand/foot symptoms started kicking in and it is much milder now. Otherwise my only significant side effect is insomnia, which I can handle.

Hope the drug works well for you with minimal side effects x

Bettybuckets profile image
Bettybuckets in reply toLibraryGeek

is that a usual side effect you were warned of? Or just appeared?

LibraryGeek profile image
LibraryGeek in reply toBettybuckets

It started round about cycle 4- I tend to wake up early, between around 3.30pm-5.30pm, and then lie awake for ages. Recently I have started listening to an audiobook on low through headphones, and usually I eventually drop off again. I have just retired, so have the luxury of sleeping in late if needs be! My nurse said she hadn’t heard any of her other patients saying they experienced this, but when she looked it up it was listed as a fairly common side effect.

Bettybuckets profile image
Bettybuckets in reply toLibraryGeek

oh jeez I already take a hefty dose of ambien for sleep with a bit of melatonin. Sleep is so important .

LibraryGeek profile image
LibraryGeek in reply toBettybuckets

I am a sleep junkie and very keen on early nights! But I feel pretty well otherwise and all the meds have nasty side effects so as they go, this isn’t too bad.

bracelets1 profile image
bracelets1

I hope this drug works well for you in fighting the cancer and I hope your body excepts it well! You are always in my prayers! 🙏 Blessings! ❤️💚

mariootsi profile image
mariootsi

I pray your new treatment will be successful!

Totheriver profile image
Totheriver

I hope the new treatment will work well for you🙏

goat1941 profile image
goat1941

I am on the same drug and my pet scans showed no cancer. I have been on other drugs but this one has been great. I had breast cancer and a year or so it went into my liver but Celica seems to be working really well. Hope it does for you.

goat1941 profile image
goat1941 in reply togoat1941

Not Celiica. my system changed the name. I take Xeloda

Hotlantaphatz profile image
Hotlantaphatz in reply togoat1941

Thanks! Day four ok!

Aquadog profile image
Aquadog

I've read so many posts on here and Facebook about this drug working well. Keep an eye on the hands and feet - I've read recommendations to start ASAP using a lotion with 40% urea in it - there's a lot of choices on Amazon - it might keep the nasty hand/foot SE at bay.

I hope Xeloda gets you stable (or even better - NED!) real soon.

Sending prayers and warm hugs,

Susan

Hotlantaphatz profile image
Hotlantaphatz in reply toAquadog

Thanks Aquadog! Another MBC Chic recommended that as well!

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