All about Xeloda
Comments
-
luvdbyhim, I was on anastrozole for bone mets which kept me stable for about 7-8 years. There was some progression, so I went on ibrance and aromasin which did zilch—was on it only four months, then was on Verzenio for about nine months which also did zilch. Then the onc put me on Xeloda and I’ve been taking it since 2020 as it’s keeping things stable. Only recently have I been having a few issues that are being monitored. I deal with the hand and foot syndrome, but use lots of lotion and I have mild fatigue. But overall I find Xeloda to be a tolerable treatment (I hated Ibrance and Verzenio).
1 -
AJ - I'm not on Xeloda, but read this thread occasionally, as Xeloda could be in my future at some point. Was very sorry to see that you had to stop the Verzenio,etc. and switch. I just want to wish you the best of luck with the new treatment. This darn disease is just so unforgiving and we never know what we can expect from one minute or day to the next. Fingers crossed 🤞 that you get a real long run with this.
1 -
@luvdbyhim I have been on Xeloda for over 6 years and the folic acid problem is critical in my case. Don't take any folic acid supplements and this is in the literature that comes with the pills. Also, completely avoid blood oranges (like in orange marmalade).
Google to find the 15 foods highest in folic acid and eat those only in moderation. That still leaves a lot of food choices. My feet are suffering after Easter dinner at my daughter's since she had such a wide variety of foods.
I also quit taking my multi-vitamins since they have folic.
Spinach and broccoli definitely cause a problem for me. I use Aquaphor at night with silicone socks and food service gloves. Aquaphor and socks during the day on my feet. And Gold Bond diabetic cream on my hands through the day.
I don't have diarrhea and am constipated instead.
I am on 2,500 a day 7 days on and 7 days off. Take the pills a half hour after a meal or snack.
Other than the folic problem, this stuff is pretty easy.
1 -
Thanks for the reassurance everyone! Just talked with the specialty pharmacist to get everything set up. She answered all my questions and I’ll start Xeloda next week. This morning I got my Faslodex shots. The nurse was wonderful! Much less scary than I was imagining
0 -
Well, apart from having to sleep 14-16 hours a day (really good sleep, not the anxious and unsatisfying fatigue collapse), I thought Xeloda was the drug for me. Not so, after 3 cycles. PET/CT shows yet more increased bone activity and new sites and I was told today I should move to Piqray/Fulvestrant, which I really really don’t like the sound of. I’ve asked for a fourth cycle of Xeloda and another check first but reading about Piqray it seems in any case to be contraindicated for people with ONJ, which I have. Baffled.
0 -
@kbl - I hear you about Orserdu. Thank you for sharing. The hand foot issue seems most are able to manage it pretty well. I really am concerned about flipping to TNBC. Truly any meds I go on will give me some issues other than the package insert. Ibrance/faslodex gave me welts on my palms and soles of my feet. She did say if I have issues she can adjust the dosage.
@divinemrsm - That is good to know you tolerated it well and things are stable!
@denny123 - I checked that list…ehhh I dont think I would miss some of those foods :) Thank you.
@AJ - Yayyy! glad things went well. See if you can get the same nurse all the time. When I would check in I would request one of the 3 that didnt hurt me. I would tell the front desk I would be happy to wait until they were free. Heck if it meant no pain, no injection site bumps I would wait for hours!
1 -
@emiliamarty Can you ask your doctor about Truqap instead of Piqray? It’s just been approved for the PIK3CA mutation and is not supposed to have as many side effects.
0 -
@luvdbyhim , I already set up the next appointment with her.
1 -
@kbl Thanks. Unfortunately Truqap isn’t yet approved in the UK.
1 -
Hi
I’ve been on Xeloda + Tukysa + Herceptin for about 15 months.
Just wondering if anybody in this group is doing intermittent fasting 16:8 ?
And if so, how do you schedule taking the Xeloda tablets ?Meja
0 -
Hi, you really need to take Capecitabine with food. I was doing 14/10 hours food diet, so I eat 3 tablets of Cape in the morning and 4 in the evening, as there were more hours gap at night. But it very depend on your dosage. My oncologist told me to take them at least 9/10 hours apart, and the bigger dose before the longest time gap. Maybe you should ask your oncologist and do 9/15 instead of 8/16, not to take them to close to each other?
0 -
Thanks.
I’ve been looking into the literature, and it seems that the recommendation to take Xeloda with food is based on the fact that this is how it was done in the original studies. There are a few pharmacokinetic studies, which show that the pharmacokinetic parameters are more or less similar, whether Xeloda is taken with or without food.I currently take 1150 mg Xeloda at my morning meal, and at my dinner meal approx. 10 hours later, and in during my off week I just started to limit eating to between 11 am and 7 pm. I probably will stick to this regime of 10 hours apart the two weeks I take Xeloda, and do interimittent fasting 16/8 the third week.
It’s not because I believe it will change the course of my cancer disease, that I am contemplating intermittent fasting 16/8 (the data is to sparse to support such a claim), - however my stomach and digestive system just feels better when I pause eating for 16 hours, and I am of normal weight.
Still interested to hear if anybody else has any experience.
0 -
Once I took Capecitabine at empty stomac because i forget to take it after dinner, so I took it several hours later, and i really didn't feel to eat again, at all. I though, for once, is going to be ok! So i just took my 2000 mg of Capecitabine, and than had the crazier stomacake for all night, i felt like my stomac was burning in fire, and weird nausea and dull pain, i just felt so bad.
It just happened that time, because I never tried again! So I'm not sure if it was caused by Capecitabine or not...but i never had something alike happened to me before, and I don't think i will try it again....If it happen I will just skip that dose.
I think doing the 10 hours apart the two weeks when taking Xeloda, and do interimittent fasting 16/8 the third week can be a good choice!
0 -
Thanks @amel for sharing - sorry you experienced a bad stomachache.
Yeah I will stick to intermittent fasting 16/8 the third week. I am in the middle of my third week right now and am feeling good, - less tummy trouble.Meja
1 -
This is really weird. Started fourth cycle this morning, hand flared up bright red within an hour. I’ve had no previous hand or foot reaction. Is there a cumulative effect to this drug?
0 -
Sorry. Ignore me. I just looked this up and it is believed there is no cumulative toxicity.
0 -
Just took my first dose! Hoping it wipes out those pesky liver mets!
1 -
Hello, I have been on capecitabine since January of this year. For a little while now I have had a lot of skin irritation and itching around my eyes up to my browline, along with itchy eyes. The area is red, dry and flakey. This isn't a typical capecitabine side effect, but there doesn't seem to be any other cause of it. Has anyone else experienced this and found anything that helped? The oncology pharmacist who is keeping tabs on me suggested an eye cream by Avène as their product line is geared to sensitive skin. However, the cream didn't help.
Thanks!
0 -
Hey all, Was wondering if anyone has any tips regarding Xeloda and pricing with Medicare. I am currently on Cobra and SSDi due to Stage IV status which makes me eligible for Medicare on 7/1. I will be talking with my local SHIP office to help with Medicare but figured I would ask for any inside info. Open to any advice when picking drug plans etc.Thanks.
0 -
@cookie54 I answered you in your SSDI post, but I’ll tell you here too. I have a Medicare Advantage plan, and since it’s considered chemo, it was covered under Part B. I did pay around $15 per month. If you are under 65, a supplement plan will probably be way too expensive. I am under 65, and I had to do an advantage plan for now. It’s really not bad. Once I turn 65, I will be switching to a supplement. I just wanted to let you know that.
0 -
Good evening everyone! I am new to Xeloda, just on day three of my first cycle. I had to change treatment as I had progression in my spine and sternum while on Truqap for a short while. It seems that the biggest side effect to deal with is hand and foot syndrome. I’ll make sure to get some good lotion and creams to help with that. Is there anything else major I should be worried about? I looked at the list for folic acid and man, there’s a lot of good on there I eat! I’ll have to figure out some swaps. Thanks in advance for any tips and advice!
1 -
@denny123 Wow, really? Even with my decent insurance my copay has been $160. Thanks for the info!
@kbl Thanks good to know. I just turned 58 and I have heard so much chatter that it was very expensive being under medicare age. Glad to hear positive feedback on the MA plan as I am been feeling angst over changing medical plans.
Thanks for responding ladies, this site is the best for many reasons. It helps to get a true perspective from people who are living it.
0 -
I had a Medicare Advantage plan for several years before turning 65. I believe it was Aetna. It really was not bad at all. There were a few perks, too. I got a quarterly stipend of at least $100 to order over the counter products from CVS. I once received a $300 debit card to pay for medical essentials. I didn’t require a separate drug plan, it was covered under the Advantage plan. A few of the drugs like Ibrance had hefty copays, but that’s the case on regular Medicare, too.
I paid nothing for the Medicare Advantage plan. I had a yearly deductible of about $5,000. I found that very reasonable. When I was on dh’s employer’s health care insurance, we would pay several hundred dollars a month just to have the insurance, and still had a $5,000 out of pocket copay.
Definitely ask your oncologist’s office for their recommendations on how to pay for Xeloda. You won’t be the first to ask. Explain your set of circumstances and they should be able to help you figure out the most cost effective solution. My onc’s office put me in touch with a pharmacy that sends Xeloda to my home. I pay $36 a month. It’s not even billed under Medicare.0 -
Cookie - I don't know your exact situation of course, and I could be reading what you've said incorrectly, not getting it all, etc (I'm a mess right now!), but if you are receiving SSDI and now switching to Medicare from COBRA, I think (don't quote me on this) your state Medicaid system should pick up what a supplement (or Advantage Plan) would, assuming you meet the limited asset requirement also.
Even if you don't have the asset requirement and aren't in the Medicaid eligible category, but are getting SSDI, to the best of my knowledge, you should be able to have full Medicare benefits, including access to supplements and/or Advantage Plans, as if you were of "routine" Medicare age. Again, I might have this wrong, because the people on SSDI and below "routine" Medicare age that I've worked with were invariably also eligible for Medicaid.
Keep in mind that while Advantage Plans are good for many and many are quite happy with them, there can be problems down the road if you want to later switch to traditional Medicare and a supplement. Getting the traditional Medicare is no problem, but trying to add a supplement with that, after being on an Advantage Plan can get tricky from what I understand, as the supplements are through private companies and they often decline people who have been on Advantage Plans and who then want to switch to traditional Medicare. You can google around about it, and I'm sorry I don't have a source to refer you to. I read an article not long ago about a lot of people being in that boat.
Additionally there are in network requirements for Advantage Plans that can catch some people up if they travel, live in small or rural areas, etc.; have transportation problems, etc. Traditional Medicare allows you to see anyone who accepts Medicare. Also, it is my understanding that with an Advantage Plan, since they are private plans, treatment proposals often have to be pre-submitted to the insurance company for approval, etc., whereas traditional Medicare does not require that. If I can locate that article I will post it, but it's been awhile. I'm sure there is also plenty of info out there on the internet if you google. Remember too, that brokers get commissions for the plans they sell and some plans pay them higher commissions than others. Most brokers also have a collection of plans they work with, but none of them to my knowledge offer the whole wide array of plans that are out there, so one broker might describe 4 plans that another broker does or doesn't offer, and can only tell you about plans they work with. Again, I know some people who are thrilled with their Advantage Plans and they do seem to work well for some, so again, it's always wise to do the research, weigh the info, and of course go with what works for you.
Please excuse my jumbled brain here. I debated whether to get involved in this conversation at all, because I'm not sure I'm even "hearing myself" right now. Faslodex/Verzenio plus morning rain brain! Foggy and groggy.
1
