All about Xeloda
Comments
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@kbl, while I blame the Xeloda I think the tears were a long time coming. It was a bit of a relief to let it all out.
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Denny - thanks for the information. So far I seem to have nausea and some vomiting, and the big D. I’m going to have to talk to my MO because it wakes me up several times at night. I’ll have to check out the folic acid food list. Your list of acceptable food is great because I eat almost all of them! I’m really hoping we can figure out my dosing so my digestive issues can even out.
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@threetree -no problem at all! We are here to help each other! My one friend had a $15,000 IRA and her case manager told her to use it as a down payment for a house since she lived in an apartment.
So that made her eligible for Medicaid.
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@katyblu Do you take the pills a half hour after a meal or snack? What is your dose?
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Denny - I totally agree that we are all here to help and learn from each other. I don't know all the details of course, but I'd be a little wary of using that IRA money for a house - even if it did allow qualification for Medicaid. It may have been a lesser of evils though.
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Denny- I am taking 2000mg twice a day. Yes I take them after food. The morning dose is the hardest because I’m nauseous and don’t want to eat, plus I don’t get up super early so trying to space out the doses is hard. I’ve never been an early eater and I don’t like to eat right before bed. So I’m trying to figure that out. Side note — I think I have the start of hand-foot syndrome. My right foot is slightly red and feels like it’s burning when I step. My mouth also seems off, maybe just dry.
Are there dose reductions with Xeloda that will still be effective? I’m worried that if I go down in dosage then I won’t get all the benefits of the medication.
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@kbl and @AJ - This is my second week of being on Xeloda. I can tell my mood has changed each "on" week. I have not been weepy (I wouldn't mind a good cry) but a little more indifferent/blah along with more ornery… More ornery than I usually am that is! My poor husband! He keeps asking me what is wrong? I don't feel like anything is wrong, I mean of course other than I am on another line of therapy and have stage 4 breast cancer! Ya know just the usual. LOL.
I have had no rash yet but definitely have had pins and needles in both hands and feet. Those who get hand/foot rash does it come about right in the beginning or after being on this a while?
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@luvdbyhim I had the ornery my first three months on Orserdu. I just kept telling my husband it had nothing to do with him. It finally leveled off. I’m not sure which is worse, crying for no reason or being snippy for no reason. It all sucks. I can so relate. I did okay with the hand and foot for about three months, but then it would get worse and better as I went. When I stopped, the back of my heels were just a peely mess. They’re all better now, of course.
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@threetree … the decision for my friend to use her IRA to use as a down payment on a house was great. She then received all of the benefits from Medicaid, which sure was worth it.
That $15,000 in her IRA was of no use to her since she needed so much help.
@katyblu …Yes, you can get a dosage reduction since 4,000 a day is crazy. My onc won't give anyone more than 3,000 daily. I started out at 2,000 at 14/7, but was reduced to 7/7. I am now at 2,500 and doing okay. 2,000 a day worked very well, until I had a bad reaction to too many folic foods and my onc took me off Xeloda for 3 months (but I went back on after 7 weeks since I had figured out the folic problem). Then I presented with a suspicious spot in my liver. So after I figured out the folic problem, I asked to go up to 2,500 at 7/7 and my hands and feet are only dry.
@luvdbyhim the pins and needles sound like neuropathy to me. My hands and feet were sore and burning until I figured out my folic acid problem. Are you on a high dose and are you watching your folic acid intake?
Denise
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Hello Xeloda users! Haven’t updated my situation for a couple months so here’s the scoop: after a 2 week break between cycles in order to resolve side effects including stomatitis & hand/foot syndrome, I did a 2nd dose reduction. Things are fine now on 2 x 500mg tablets twice a day, after breakfast and dinner. 14 on-7off. Liver tumors are shrinking.
The best advice I can give for newbies just starting capecitabine is to get some DICLOFENAC gel or generic Voltaren. Apply it twice a day on your palms and soles to mitigate HFS followed by a good skin cream, not lotion. Weeks of this regimen have helped heal the tips of my digits and are allowing fingerprints to grow back.
My heels began peeling but I kept up the topical treatments so they are getting better. Now that a hip replacement has become necessary, from osteoarthritis showing up just since the beginning of March, it’s difficult to do much. The rapid emergence may have been masked by the high dose prednisone I was taking for pneumonitis…
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@vinrph…The long-term usage of Voltarin is not recommended…..quote…Long-term treatment with Voltaren can change your liver enzymes.
On a blood test, your levels might be higher than normal even before
you have symptoms. This can be a sign of serious liver problems that
could lead to the need for a liver transplant or even be fatal if not
treated.That is why I have questioned about it when I first read that some oncologists recommend it. I had used it many years ago for knee pain and was warned not to use it for more than 2 weeks. That is why I prefer to just reduce my folic acid intake since it won't affect my liver.
Of course, some ladies might only use Xeloda for a few months, but I have been on it for over 6 years.
So please use it cautiously.
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As a retired pharmacist, I can appreciate the potential for extraneous absorption. However, recent recommendations support use of this topical (I use pea sized amounts). See https://doi.org/10.1200/JCO.23.01730 from February 2024.
https://ascopubs.org/doi/full/10.1200/JCO.2023.41.16_suppl.12005 is another reference. Finally, an older mention of this option https://ascopubs.org/doi/full/10.1200/JCO.2021.39.15_suppl.TPS12135
These articles appear behind paywalls but the abstracts and conclusions are available and worth considering…
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@vinrph…interesting comment. I think that hands and feet would take a much larger amount of pea-sized. I will continue to watch my diet since my hands and feet haven't been burning for over 4 years now on my moderate-folic diet.
My go-to for dry feet has been Aquaphor, and I really should buy it by the case.
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One of the reports mentioned above described a “fingertip” amount of the gel. People with bigger hands & feet must have larger palms/soles and need to apply more for complete coverage. Mine are both on the small side - shoe size 6. Not everyone gets the inflammation of course. For some it may not show up until a few months down the road.
Anyone starting capecitabine should certainly discuss topical diclofenac with their physician if they want to try it. With so many individual factors to be considered, sometimes we each need to find our own way. I hope my experience mirrors the success Denny has seen. I would love to get multiple years without progression.
My tumor marker 15-3 is the lowest it’s ever been. Other labs are OK compared to 2023 when my liver enzymes went through the roof. The pneumonitis that appeared last winter was wiped out with several weeks of prednisone. High dose steroid treatment accelerated cataract development but those surgeries are now behind me also…
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I am starting Xeloda on Monday and have been reading back on this thread. I have both Voltaren and Aquaphor here. Are there any other creams you all have used that you like? I am hoping to get some time out of this line of therapy as Piqray and Enhertu have failed me already this year.
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One thing I recently became aware of with the Voltaren is that if it is on your hands and your cat or dog licks your hand, or you pet your cat or dog and it licks its fur afterwards, it can be extremely toxic to them. I’ve chosen not to use it for that reason, as I have a cat.
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Good point with the Voltaire @divinemrsm. Probably best to cover the area after applied. Thanks for bringing that up!
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@emac877…In my 6 1/2 years of Xeloda, I have tried many creams. I do use Aquaphor at night and on my feet during the day with socks. On my hands, I use Gold Bond diabetic cream for extra dry skin.
And please remember to limit the high-folic foods, which is the reason why most of us have pain and infections.
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While I've been off this treatment line since last fall, I just wanted to shill for Dr O'Keefe's foot cream as I've been using it post bout with cellulitis in my feet which caused redness and dryness similar to HFS. It goes on and is absorbed like a dream, much better than anything else I was using for Xeloda (and am now trying to use up on this!). Its in the blue tube/tub, their hand stuff is in the green. A nurse even commented how their hand cream got her through Covid!
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Good evening all! Well, it looks like I probably won’t continue with Xeloda. At the end of my first week on 4000mg/day I was at my palliative care doctor’s and I had a dizzy spell and felt like my legs were going out under me. So I sat in the office and drank some fluids. My PC doc called my MO to see if I could fluids from them, but he suggested the ER. I didn’t want to go to the ER again so instead I went home and drank some electrolytes and ate some fruit. Wrong move. Starting the next morning I basically was bed bound. All I did was doze and have to big D. Didn’t drink much and didn’t eat. The next day was the same but I told my DH I might have to go to the ER. Didn’t end up going to the ER until the following morning. It was brutal! I couldn’t feel my tongue because I was so dehydrated! They ended up giving me a bag and a half of fluids, but I was still having the big D, so they admitted me to the hospital to check for infections. I didn’t get any anti-diarrheal until the next day! Then they discharged me. I’ve been steadily getting better. Still having the big D but not even as close to as bad before. Still trying to build up fluids and trying to eat a little.
So wow… it was a brutal 5 day saga! They are testing me to see if I have that gene that can worsen side effects. I still haven’t talked to my MO so who knows what we are going to do for treatment. Right now I am obviously holding treatment and it makes me nervous. Sorry for the book!1 -
Try Cetaphil lotion. I’ve been on Xeloda since January 2024, i use it every day and night, so far I don’t have the hand & feet issue but it might be also because Xeloda did not work for me. Onco added Taxol last month.
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Sorry about that bad experience,
now in Italy and may be in all of Europe it is mendatory to do the DPYD test to see if you can handle Capecitabine. You can not start the therapy without it here! I think it is important to do it, it is rare but not impossibile to have that mutation, and it can provide quite dangerous side effects.
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Thanks y’all for the well wishes. I’m slowly getting better but my stamina is shot. I’m hoping I don’t have that mutation and we can try it again with a much lower dose!
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Last week was my second week of being "on" xeloda. Got fatigued on Friday but Saturday afternoon I literally hit a wall. Monday started my "off" week and I am still fatigued. Not as bad as Saturday night but still tired. Saw PA today and my husband said I seem different on these meds. More aloof. I think it is the fatigue. To many people talking just seems like to much effort to speak. Anyone have this? Also how long did your fatigue last if you had any?
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@luvdbyhim ..typically you will be more tired on your off week. Anyone who has problems at a 14/7 schedule should ask for a 7/7 schedule since it is easier.
I am always very tired, but my nurses tell me it is because I have been on chemo for 22 years.
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@luvdbyhim I also finished my second week. There were two days in there where I was in bed almost the whole day. Then it got better. I’m about to start week three.
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@luvdbyhim I wanted to say for the first few months on Xeloda, I couldn’t stop crying. It would just happen out of the blue. I told my husband I had no idea what was going on, but slowly it got better. I’m sure we all react differently, so hopefully you start to feel a little more like yourself in a few months. I did have to take daily naps on Xeloda, though.
@katyblu I’m really sorry for your horrible experience. Can you please let us know what your test result is. I agree, that test should be mandatory here in the U.S.
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