All about Xeloda
Comments
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I like the looser food service gloves at night...a lot cheaper too. A freind told me about VariCream which she says is great, but didn't use it for Xeloda hands. Her husband had extremely dry skin and it really helped him.
I haven't tried it yet. But I am doing okay with Aquaphor. Some days my hands and feet do burn, but that is coming from the nerves inside, and only lasts for a day. Ointment won't help that.
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Thanks for the info Denny123. My compound ointment includes Ketamine, which is supposed to addressnerve pain. So far it hasn’t helped much, but I may not be staying ahead of the pain.
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Hi everyone,
I got the gel socks for my dry feet but it is little uncomfortable. I tried it for the first time last night and i find it little uneasy. I am also feeling that my feet is little hot in the morning after i wake up. And i feel like my body is tight and little swollen. Also the leg cramps too. Does anyone of you guys have the same experience and what you guys are doing to avoid it. Please help.
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Hello ladies. I wanted to ask if anybody has body pain. I will begin my 3rd cycle of Xeloda on Sunday. I will increase the dose from 3 in am and 4 at night to doing 4 tablets am/ pm. 14/7. This past week I got my Nephrostomy tube changed and saw my oncologist. Anyway my legs especially both of my knees are killing me. I can barely stand up on my own and it hurts to walk. I remember mentioning to my onc they were bothering me a little but 4 days later they are killing me. I did call and expect to here from my onc tomorrow but is this even a side effect of xeloda? And keep in mind I was just upped from hydrocodone to oxycodone which has been a tremendous help with all of my other pain so I don’t understand why im having such leg and knee pain. Is anybody else having this issue?
I hope everybody is doing better. I am using the udder cream and my feet are starting to get cracked and peeling. But Im not faithful with it unless my feet are burning.
Hoping everybody gets a good night rest.
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Mel, that sounds awful! I've been on xeloda since early November but haven't experienced any body pain like that nor do I remember anyone mentioning it on these boards! I am glad you are seeing your oncologist. Keep us posted and I hope you get some relief asap!
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Mel, I'm with Katty on this. Glad you're seeing your onc. I have more and more aches and pains, but I believe it's likely to be arthritis (I'm about to be 74, and they told me in 1991 at first diagnosis, during a bone scan, that I had a lot of arthritis then). No pain then, though. If I find out differently, I'll let you know. Hoping that you get some relief.
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Mel-I don't have any body pain either and have been on X for over 2 years. Wondering why your onc is increasing your dose???
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Ladies I found THE best cream (thanks to some people on FB) for the peeling... O'Keeffe's Working Hands!!!! Its amazing.
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I like O'Keefe's, too. I use it or Aquaphor at night!
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Nicole
I also stopped using the utter cream because it has parabans in it and I try to avoid those. I am now using eucerin and it has been an improvement. I also periodically soak my hands and feet in cold water and that seems to help especially before bed.
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Jjzn...yes Udder is loaded with Parabens..another reason I also stopped..plus it didn't really moisturize... I also use the eucerine intensive repair..it has 5% urea.
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Thank you ladies. My onc said it wasnt from xeloda. I stopped the pain pill i was taking and went back to tramadol and its helping. My knees have become swollen so I think its just arthritis. I guess tramadol is anti inflammatory. I dont know but I was able to get up and clean some today and cook. So Im good. Thanks everyone.
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Yay! I am still NED! Have been on Herceptin and Xeloda for 2 years.
Bad news is that I broke a rib last night, rolling over???? (I DO live alone!!) I do have osteoporosis, but am taking Prolia, calcium and Vit D for it. I hardly do anything, but maybe when I was moving stuff around in my laundry room I cracked a rib??? And nothing was heavy!!!
I broke 3 ribs at once a few years ago, so that was a lot more painful.
Old age is Hell.
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Denny, that is just so frickin amazing. I'm so happy for you, but not for the fall. Do you have cancer in your ribs? I do, and that worries me. Well, I have cancer in femur, hips, pelvis, ribs, most of my spine, jaw and skull. So all breaks scare me. I am younger than you, 61. As for getting older, my MIL says there is no such thing as the "golden years".
Hi Nicole!
Edit to add....how so very rude of me, and I'm so sorry. I'm not on X anymore so don't comment much here. But I was on it for 5 years, so I know a few and I still read as it's in my faves.
Hi to EVERYONE! And throw in some love and huggles from me.
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Thanks Goldie! But I didn't fall! All I can think of, is that I cracked the rib while I was moving non-heavy stuff. And it happened to break last night.
I have osteoporosis, but no bone mets. I didn't get to ask if my ribs are pourous, but haven't been told that.
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Denny, what wonderful news- except for the rib of course. Ouch!!!
I hope you continue to have a wonderful long -lasting and enviable relationship with Ned!
Katty
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Thanks Katty!
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AWESOME DENNY!!!!!! I am happy for you! Keep on Going!!! Sorry about your rib though!
I will results of MRI Liver and Full PET scan tomorrow...please pray X is working!
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still following as you are sone of my favorite people. YayvDenny. thinking of you NicoleRo
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Nicole, sending BIG prayers for you, please report here when you find out. My love and huggles to you and all the gals here.
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Denny, still NED, so happy for you, - and 18 years dealing with MBC, - such an inspiration. I hope your rib heals smoothly. I took a fall three weeks ago and bent or broke some ribs; quite painful, just breathing or coiughing was tough the first 10 days, but the last week, it has been much better.
Take care all,
Meja0 -
I didn't have as good as news as denny...here goes (cross posting)
Well there is good news and bad news on my scans.....
The good news is that my of my 2 bone mets...the one in the hip isn't even visible...and the one in the sacrum is has shrunk on Xeloda.
now the bad....
My liver supposedly had 3 tumors but 2 of them had been cryoblated in end of Oct 2019. They were cryoblated under 1 dome (together).... well today the PET and MRI showed that it looks like I have 2 or possible 3 tumors...here goes....Please try to follow me here its gonna get confusing..
A. The (2 they cryoblated) looks to be gone the PET shows minimal if any uptake but the MRI shows it bigger, but they admitted they are not familiar at my facility with Cryoblated tumors and are not sure if this is actually dead and smaller so we have to wait for the IR from Hopkins that did it to look at it...my husband believes its a non issue because they said the same things about it when I had a CT scan 2 weeks after the cryo and it turned out when the IR at hopkins reviewed it he said it's all good and dead end. of. story. So hopefully its still like that.
B. That left 1 tumor...the one they couldn't get with cryo bc it was too close to the colon wall...that looks bigger..but we don't know if that is because it grew in the 2 months I was off all meds before I started the Xeloda which would actually mean it is stable.
C. There is a new tumor near the one they couldn't cryoblate...but again..we do not know if that was there during that 2 month period I wasn't on any meds before starting the Xeloda..and there is a good chance it was because when I consulted for the Cryo the PET I had (from a different facility) said I had 4 tumors in liver....that the 4th one was new from Ibrance failing...yet the IR said NO..there are only 3... HRMMMM now they are seeing a 4th??? ughh so we are unsure again...if this was there or is actually new ....
So we sent the MRI to the IR to speak to my MO directly and tell us what he thinks about the cryoblated area.
In the meantime we are going to do Xeloda for 6 more weeks and scan on week 7.
If I am stable we stick with it. If I have progression we are going to move on to either...:
Paxitaxil> spelling....
or
Doxil (which I asked about bc I heard its easier on the body than the taxmen) My MO is open to both but would prefer starting with the Taxane..because she wants to hit this hard to set it back then is open to Doxil.
We are also looking into a immunotherapy trial.... but right now it's looking like I will have to choose between the 2 chemos and I want your opinions... and before you ask yes I will find out about more cryo but the location is right by the tumor that is by the colon wall which they couldn't cryo.....
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I did pa it’s ok when I ran out of other options- cleaned everything up in my liver very quickly. I lost my hair but after several months it started to grow back again. I’m told that happens frequently.
I hope that you have no new tumors and xeloda is working so you can keep the others as back up for the future.
Just wanted you to know that paxitaxol worked for me.
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Leftfoot thanks....How long did you stay on it and why did you stop it and what did you move to next???
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NicoleRod- was on it for 14 months, switched to clinical trial of kadcyla and neratinib for brain Mets. It was working great and keeping me stable/shrinking liver Mets when I changed to address brain Mets.
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Nicole, I guess we have to take the good with the bad, eh. Not that we want to, but because we have to. Praying when there is more clarity that it's more good and not bad.
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I have horrible HFS now. Hands are the worst swollen, dark red, itch and burn!
Feet are but feel ok when I’m off them.
I see the MO Monday for a follow up. Scared if they lower the dose for cancers sake but this is miserable.
Also did anyone have heartburn?
Any advice? Any info? 💕0 -
Ugh, Lee, that sounds miserable! I was having milder HFS symptoms but my MO took me off my meds for about 10 days. Now I'm still on the same dosage 3000 mg per day, but my dosing schedule is now one week on one week off. I had really good results with my first scan in December but I'm a little more nervous about the one in March because I've been off meds twice since then for other issues that turned out not to be serious.
Maybe your MO will put you on a different dosing schedule and or lower the dose. I know it's nerve-wracking but you need to get that HFS under control.
Yes I've had heartburn and digestive issues as well as loss of appetite from time to time. Tums and Pepto Bismol have helped. I used to take Nexium when needed but when I first started taking xeloda in November, the pharmacist mentioned that there may be an interaction between the two that may lower the efficacy of xeloda. I didn't explore it any further I just started taking alternatives to Nexium.
Best of luck at your next appointment,
Katty
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Leee-what dose are you on? I am only on 2,000 a day at one week on and one week off. And I am an 18 year survivor of Stage 4 MBC de novo. I have been NED now for 2 years on only 2,000.
I don't get heartburn, TG.
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Denny glad your scan was great. Nicole Im sorry yours showed more activity. Praying that you get better news from the IR guy who knows more about the liver cryo tumors. Leee I have heartburn and my hfs is getting worse. I dont think its as bad as yours. I do take my omeprazole cause my pharmacist said to just take it several hours after I take the xeloda and it would be fine. I eat zophran about 2-3 a day. I put the utter cream in my feet and put the gel socks on that someone suggested. They are great I just cant walk in them. My heals are the worst. They are getting hard and peeling. Painful. My hand look like they aged 50 years in the last 2 months. Lol. Thumbs are extremely sore. Im on 4000 day. 14 on and 7 off.
Leftfootforward how are you doing? Praying we all improve and have great pain free weeks to come. Hugs everyon
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