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Timing for Xeloda

HelenWi profile image
22 Replies

I’ve just finished my round 2 of Xeloda and wondering how others manage taking it at the same time every day. My schedule is somewhat variable.. eg sometimes I need to eat dinner early and be somewhere; ditto for breakfast. The specialty pharmacy just called me about a refill and I asked them about the importance of the timing. Pharmacist told me that to get maximum effectiveness of the drug, you must take it every 12 hours and within 30 minutes and I should consider adapting my lifestyle accordingly. Yikes! That worried me. How closely do you all stick to such a schedule?

Also, I don’t have HFS and am using Diclofenac to hopefully avoid getting it but I’ve developed a painful rash on the back of my legs .. above the knee. Has anyone else had something like that?

thanks in advance for your help!

Helen

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HelenWi
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22 Replies
Flower1513 profile image
Flower1513

My mom tried to take 12 hrs apart as much as possible. Sometimes it was tough . But it does say to do that. But if you have a day or two that you can’t ….. I think you would be ok . Just try as close as possible. She got 8 months out of it with very little side effects !

HelenWi profile image
HelenWi in reply toFlower1513

Thank you! I’ll need to try better!

kiwi67 profile image
kiwi67

It is tricky, I have had to alter my morning routine and on my week of taking the tablets I wake earlier at 7 30am, have a big bowl of porridge and then the tablets. I have the second lot at 6 45pm. The pharmacist said that an 11 hour gap was okay. If I ate any later in the evening I would then have gastric issues with too much food in my stomach when I go to bed, which is a lot earlier these days due to the fatigue, which is about the only side effect I have consistently.

HelenWi profile image
HelenWi in reply tokiwi67

thank you! I’ll need to pay closer attention to my eating schedule . I don’t like to eat right when I get up, but that makes the morning dose a little variable and leaves a smaller gap between the evening dose. Darn cancer sure likes to control our lives!

kiwi67 profile image
kiwi67 in reply toHelenWi

I'm not keen on eating at 7 30am either but I keep telling myself its for one week then I can have a week of brekky at 9am. I'm lucky I'm 1 week on 1 week off.

HelenWi profile image
HelenWi in reply tokiwi67

I’m hoping to switch to 1 week on 1 week off at some point as well. I just changed drugs after 18 months on Piqray and my onco thought to start with the standard interval and see how it goes.

Blondslovelife profile image
Blondslovelife

Hi, I just talked to my onc nurse and she said if eating a meal makes it later than 12 hrs then to eat some cheese and crackers, crackers with peanut butter, just take it with protein and some carbs. Hope this helps. I start my first round on Monday.

HelenWi profile image
HelenWi in reply toBlondslovelife

Thanks for the good suggestion!

utahsara profile image
utahsara

My wife who has stage 4 met breast cancer that has spread to her bones, and is Terminal, is 14 months out from her diagnosis, she started on Ibrance which caused nausea and diarrhea, but it worked well for the first 6 months and first pet scan, then three months later is was shown not working, so we switched to Truqap, that caused her nausea, rash, diarrhea and loss of taste and appetite. And again the Pet scan showed mixed results, some tumors shrunk, some good larger, So now she is on Xeloda, 14 days in on her first cycle, slight nausea only once in a while. Now she eats better, feels less tired, can exercise, no rash so far, no hand foot syndrome so far, but we won't be getting a new pet scan until around Christmas after 6 cycles. She's on the 3000 mg per day, she takes 1500 at 10 am, then the other 1500 at 10 pm, both with oatmeal or cereal. So far so good!

YogaGRL52 profile image
YogaGRL52

I tried to stay within the half-hour schedule. Can you take meds with you to maintain schedule? Peanut butter crackers??

I had oatmeal with peanut butter in it for morning and then took Xeloda after dinner. Pretty much did 6:30am and 6:30 pm schedule.

Using diclofinac on hands and feet twice a day helped me avoid HFS through round 4. Steroid cream may help with rash. I had Keytruda too so not sure which caused rash.

Best of luck to you.

HelenWi profile image
HelenWi in reply toYogaGRL52

Yeah, we throw so many things at the cancer, it’s hard to tell what’s working and what’s giving the side effects. I am in fact using diclofenac in hands and feet and steroid cream on the crazy rash. So much to do every morning!

caw517 profile image
caw517

I tried to stay as close to 12 hours as I could but often it would vary to 11 hours. I had what I thought was a pretty good run on it. It worked for 15 months !!!

MPUAP profile image
MPUAP

I do intermittent fasting for 14 to 16 hours each day so my Xeloda doses are 8 and 16 hours apart. Not sure if this actually has a big effect on results. Been on it for over a year along with pembrolizumab and more recently bevacizumab. I also take Ivermectin, Quercitin, lycopene and niacin amide. Avoid supplements with folic acid. Try Benadryl oral at bedtime for rash.

TammyCross profile image
TammyCross

I didn't realize it is that important to have the doses 12 hours apart. I take it at different times, but could make sure the 2nd dose is 12 hours later. The half hour is within a half hour of eating. That is pretty easy. If I am out to dinner and forgot to bring the pills, then I will have a little snack when I get home and take them.

It is not clear that it is working for me (a couple of things shrank or went away, a couple stable, but two new ones -- I have never had so many since I started Rx). I hope my laissez faire approach to timing is not the reason. I am also on a reduced dose of 1000 mg in am and again in pm.

Hazelgreen profile image
Hazelgreen

Xeloda seems to have a host of side effects! If I were you, I would ask my oncologist to prescribe an alternative such as Kisqali (one pill once a day whenever you take it) which might better agree with your body. I really wonder why some oncologists prescribe medications that are so fussy to take!

HelenWi profile image
HelenWi in reply toHazelgreen

It’s actually supposed to be milder than a lot of other drugs. Kisqali is more of a first line drug. Xeloda is prescribed after CDK4-6 stops working or as 3rd line. I started with another CDK 4-6 - Ibrance - but got pneumonitis from it… go figure. Then I had Piqray.

I think Xeloda is fussy because it’s a chemo drug. You need to have food in your belly to slow down its metabolism which protects the liver.

Hazelgreen profile image
Hazelgreen in reply toHelenWi

I think the research is now clear that Kisqali is a more effective drug overall than Ibrance. In any case, I do not know any reason not to try it for six months, since it is so much easier on the body than chemotherapy.

YogaGRL52 profile image
YogaGRL52

other thing that I found worked on rash which was also very itchy was to ice it.

Amazon had cover from wrist to elbow I could slide my arm into. May work for your leg too. Also had hand and foot mitts against nerve neuropathy…

MettavivorDS profile image
MettavivorDS

I’m on Truqap and not Xeloda, but it’s also taken 2 X daily 12 hours apart. I take the first dose at 10 or 11 AM and the second dose at 10 or 11 PM.

HelenWi profile image
HelenWi in reply toMettavivorDS

The challenge with Xeloda is that you need to take it within 30 minutes of a meal. 😉

MettavivorDS profile image
MettavivorDS in reply toHelenWi

I see. That’s a lot more complicated. Other folks have mentioned a protein snack in lieu of a meal. It still might be possible to maintain a later schedule if a snack works. I do see how important it is to protect the liver. For what it’s worth, I plan my pill taking around when I want to take them, rather than planning my meals around my pill taking. If meal times vary, which for me they do, a set time can be easier to remember and plan around.

HelenWi profile image
HelenWi in reply toMettavivorDS

You’re right! It’s easier to have a set pill time. I’m going to check how much you really need to eat.

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