All about Xeloda
Comments
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Hi all, I have a long history of breast cancer which I will indicate next time. I just started Xeloda, 7 days on and 7 days off. I'm having trouble working out the meals in this 12 hour cycle and seem to be eating at crazy hours. If any one has any suggestions or hints about planning time for eating or any other information about how to deal with this drug, I'd be very appreciative. Thank you, Marie
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I see lots of questions about taking Xeloda with food, how close to eating etc. questions which I had when taking it, since I would forget sometimes. I asked my niece who researched this question for me and she came up with the following information that made it okay for me not to worry about missing a dose with a meal, and making it okay not to have a 12 hour rule. Hope this helps people feel less guilty when forgetting to take your dose with meals.
"When the initial clinical trials for capecitabine were conducted, the people who designed the trials were worried that the drug would be degraded by the highly acidic environment of the stomach. Eating food makes the stomach less acidic, and so the first patients who took this drug were asked to take it after eating so that it would be less likely to degrade. The clinical trial was successful (cancer patients had better outcomes on the drug) and eventually they conducted other studies to specifically investigate whether taking the medication before or after food made any difference to how the drug is processed by the body (this is called pharmacokinetics). The results of this study were opposite to what was expected - in patients who hadn't eaten, instead of having less measurable drug in the body, they actually found more - so the idea that the acidic stomach was going to degrade the drug proved to be incorrect. However at this point all of the evidence for how safe and effective the drug was had come from trials where people had taken the drug with food, and since drugs have to be prescribed following the procedures used in clinical trials as closely as possible to ensure that patients have the expected clinical experience, the recommendation continued to be for patients to take capecitabine with food.
I've attached a paper from 1998 that is relevant to this issue, and highlighted a few sections that you might find interesting. They conclude that the effect of food on capecitabine pharmacokinetics is probably not clinically significant, but they don't know whether changing the dosing to have patients take the drug without food would pose any additional safety risks. So, the authors recommend "to continue to take capecitabine after food (within 30 minutes) because all clinical studies thus far followed this recommendation."
In short, it probably doesn't matter whether you take this medicine with food, but they don't know this for sure and have to give you cautious advice."
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NinaCA, I don’t see the attachment.
I try to make sure I at least take the first dose before 8 a.m., and the second dose not before 6 p.m. I think ten hours apart is okay. The 7/7 schedule makes it tough because I sometimes forget. I’ve only missed one dose, though.
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NinCA, Thank you so much for this information It makes taking Xoleda easier to stay on top of. I don't see the attachment you referred to, but would love to have it if possible Thank you.
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Nkb-an SUV of 4-5 is low. My chest nodes went as high as 14. Of course, that was when Kadcyla quit working on them.
mzr-10 hours apart is fine for the pills. And I have read that the pills work better with partially digested food. I use a pink BC kitchentimer and place the timer right beside my breakfast plate and it is on my table also for my evening snack.
Warning to everyone-avoid foods high in folate and folic acid! It makes a huge difference for me in my foot pain. Not all women are affected by it, but from the post on my Facebook groups, it seems to be about 75% are bothered by it.
And for my 4 years of Xeloda, I have used Aquaphor at night on hands and feet with silicone socks and food service gloves. I also use Aquaphor during the day. And I have very greasy keyboard keys-LOL.
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my MO thinks Xeloda has failed and wants me to start Doxil. I am sad to switch to IV chemo- I am going to meet with tj RO to see if he thinks zapping them would be a way to treat them , but, there are several spots.
My MO is a bit worried that my bone marrow will get overrun with cancer like it did 2 years ago between treatments. Although she agrees that this is very slow growing now so it makes the decision a little muddy.
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Nkb-so sorry that Xeloda has failed for you! I have been on IV chemo for 20 years and it honestly was easier than Xeloda has been for me.
I would think that you need systemic chemo since zapping your current ones won't keep more from appearing.
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I bought Auqaphor with the sponge top thinking it would spread easier. NOPE! You need about 25lbs of pressure to squeeze it out.
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MRZ119- https://pubmed.ncbi.nlm.nih.gov/9563888/ is the abstract she attached about food and Xeloda, in 1998.
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NinaCA, thank you!!
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Winter is always rough on my hands and feet anyway, and then the hfs makes it even more challenging. I try different lotions and creams from time to time, and I recently got Gold Bond Healing Skin Lotion with Aloe and so far am pretty happy with it. It is a thicker lotion and not greasy like Vaseline or Aquaphor. Another bonus is the reasonable price, a 14 oz bottle for $7.99 on Amazon. The pump dispenser is very convenient. Plus it's fragrance free, something that's a must for me.
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3 fingers are starting to crack so MO said to go 3/2 daily for 7/7. I've been using Aquaphor with cotton gloves & tried disposable plastic ones instead. I was @computer for 2 1/2 hours that way. Hands were still gooey when I took them off. The cotton absorbed much more than I realized.
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The cotton gloves and socks absrob all of the ointment. I have been using Aquaphor with silicone socks and food service gloves for 4 years.
I still get finger cracks in the middle of some of the fingers of my right hand. So I use Bacitracin & a bandaid there.
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Hello everyone! I have been absent from these threads for about a year... I started Xeloda last February and it' been harder for me than Herceptin was, although I don't seem to have the severity of HF that some of you are describing. My dose is low - 1,000 in the morning and the same at night 7 on 7 off. I do get very fatigued during my week on and sometimes sick to my stomach but those are biggest complaints. So far I am "stable" but haven't managed to get back to NED the way I was with Herceptin alone and my MO is telling me that I probably wont'. My TM's are in the 70 ish range instead of the normal range, and my stamina isnt' quite what it was before my progression, but I am trying my best to stay active and hang in there. So happy to see that most of you are still on this thread... didn't really see many dropping off and switching to something else so that makes me happy. I love coming back and seeing familiar "faces". I am coming up on 10 years with MBC - in September.
Happy to be back!
XO
Andi
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Hi, Andi67. I’ve been on the forum since 2019 but just switched to Xeloda in September of last year. It’s nice to meet you. My tumor markers have dropped quite a bit since September, but one is still 154, was 490 at the beginning of my journey, and one is 91, started at 220. My CEA was at 8.5 but is now 1.7. This is a great medication so far for me. I’ll take it as long as I can. I’m on 3000 mg per day 7/7. My side effects seem to be different each month. My tumor markers barely dropped the two years I was on Ibrance.
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Hi Andi67- I just was wondering about you the other day! I am glad that you are doing so well on Xeloda!
I am still on it, but, it may be starting to fail after 22 months. I am getting some new bone mets zapped and will see if that holds me for awhile.
I find It very tolerable also.
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Andi-welcome back! It's great that you are tolerating Xeloda well and I hope that it works for you!
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So I've been on xeloda for a while. I have a Telehealth appointment today with my doc and my tumor markers are rising (although I'm not sure that there is anything in my scan that supports this). Also, even though I'm at a very low dosage (950 mg total per day when I'm on it) it totally kills my appetite and some days I also have nausea despite taking anti-nausea meds. Definitely on my last day of the week on, I feel like crap. In reading about xeloda, I did come across some info about some sort of a test that people can get to see if they metabolize 5 FU, which is what xeloda converts to in the body. I don't know if this is old info or not, but it sounded like people are regularly tested before starting xeloda to see if they can metabolize 5FU. Does anyone know anything about this? Has anyone had this test?
Just looking for a reason why everyone else seems to do so well on this drug yet I have such problems with it. I wish we could make it work. I don't really want to switch drugs again.
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BevJen, I have not had that test. I’m sorry it’s so hard on you. Are you doing a 14/7 regimen? I am on a 7/7, and I seem to tolerate it okay. I do get nauseous sometimes. I take a Pepcid every morning before I eat. I think it helps somewhat. My hands are a mess right now, mainly my thumbs, just peeling a lot, but that’s about it. Please let me know what the test says for you if you get it.
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KBL,
I am doing a 7/7 regimen. I would never make it 14 days on this. By day 6, I'm really awful.
I take two pepcids every morning because I have GERD. Some peeling on my hands, but I am a "picker" and I think I've exacerbated that myself. Pepcids don't seem to do anything re the xeloda. I also take Ativan (lorazepam) two times a day.
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BevJen, since I'm having so many side effects on Xeloda, my MO ordered a test to see if I have DPD (dihydropyrimidine dehydrogenase) enzyme deficiency. DPD
is needed to break down 5FU and capecetibine. That's probably the test you're talking about. I do not have that deficiency.
But, I too wonder why I'm having so many issues, especially GI. I'm only on my third cycle, so maybe with some more adjustments to dosages, it might improve. Have not yet had a scan since being on Xeloda, tukysa, herceptin. But, blood tests are showing improvements in tumor markers and in areas including WBC and RBC.0 -
BevJen, since I'm having so many side effects on Xeloda, my MO ordered a test to see if I have DPD (dihydropyrimidine dehydrogenase) enzyme deficiency. DPD
is needed to break down 5FU and capecetibine. That's probably the test you're talking about. I do not have that deficiency.
But, I too wonder why I'm having so many issues, especially GI. I'm only on my third cycle, so maybe with some more adjustments to dosages, it might improve. Have not yet had a scan since being on Xeloda, tukysa, herceptin. But, blood tests are showing improvements in tumor markers and in areas including WBC and RBC.0 -
MoCoGram
That's the test for sure. I've not had it. Maybe they only give it if you are having problems?
I initially had huge drops in tumor markers, and some improvement in other labs. Now, other labs are looking good but tumor markers are going back up. Don't know if I'm on too low of a dose, or what, but I don't know if I could handle increasing the dose with the GI stuff. First scan was terrific. This one seemed to me to be relatively stable, except that it mentioned the work "pseuocirrhosis." It is so irritating to me to have multiple radiologists reading scans, with each giving their own spin, so you never really know what's the most accurate picture.
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BevJen, it’s hard to keep up with what schedule people are on. I was hoping you could cut it back. Darn it. I’m a picker too. My thumbs are a mess, and I pick. Ugh.
I’m really sorry the Pepcid isn’t hitting it. I hope you can get some relief.
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I'm a picker too. My thumbs and finger tips are the worst.
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Well, I had my Telehealth conference which was a total bust in many ways. First, I had tested my video and audio a couple of days ago. Everything worked fine. Today -- not so much. My doc said she had a similar problem with someone else today. So I had the pharmacist on one line at one location and the doc at another location -- it was like a bad three way call and I couldn't even hear everything, which was awful.
This is what I can away with -- I am upping my neratinib, seeing how I do on that, perhaps restarting xeloda next week at yet a lower dosage. We may add fulvestrant into the mix. Aside from that, I will have to read the notes because I couldn't pick everything up.
Very frustrating and tiring day.
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BevJen, I’m sorry about your meeting. There are not many I’ve found on fulvestrant with Xeloda, but I am. My tumor markers are dropping. I would definitely consider it. I see you’ve been on it. I would hope it would help
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KBL,
The whole fulvestrant with xeloda makes sense to me considering the ILC stuff. Do you have any ERBB2 mutations? I cannot remember. And where are you treated -- I'm thinking Moffitt but I'm not sure.
I'm going to talk to my doc about this. I don't see how it can hurt -- I didn't mind being on fulvestrant at all. It was an easy drug for me.
Thanks.
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I don’t have the ERBB2 mutation. I’m actually treated at Florida Cancer Specialists
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On top of Xeloda hfs, winter wreaks havoc on my hands and feet as well. The combo is challenging to deal with. The colder the weather, the more dry my hands, even with constantly applying lotion all day long. Temps are currently in the teens. Also, applying so much lotion makes my hands so smooth that things often slip right through them. Yet the skin still peels. I just try my best to minimize it with varying results.
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