All about Xeloda
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will be starting Xeloda some time in March…I was on Truqap for a few months…in first week of Dec 2025 I had a major heart attack and now recovering..a little nervous about Xeloda…was on Ibrance for 8 yrs with no progression…any advice on Xeloda would be appreciative
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@airlinegal - Going to try this again. Lost previous post. I'm not the best person for what you need, as I only started taking Xeloda in mid January, but others will likely be along with more of what you need.
First, I want to say how sorry I am about your situation - especially the heart attack. I hope you are doing much better these days and recovered well.
I took the Verzenio/Faslodex combo for about 2.75 years before starting the Xeloda. Not nearly as long as it looks like you got with Ibrance. Eight years is an amazingly good run.
My oncologist was originally going to give me Truqap first, but then changed his mind and said he was going to skip it altogether and just move to Xeloda, because I am so side effect prone; seeming to suggest that Truqap is a harder drug to handle. I am still in the middle of the first cycle and so far fatigue has been my biggest problem. No diarrhea or nausea or hand foot syndrome so far (knock on wood). I also have some body aches and a bit of a fuzzy brain, but nothing awful. I'm on a one week on, one week off schedule, and very glad for that. My limited experience is telling me that two weeks on would be more problematic. If I didn't feel so tired, I think I'd be relatively ok with what I've experienced so far. The biggest issue for me right now is if this drug will work for me at all, and if it does, for how long.
I wish I could tell you more, but with my extremely limited experience so far, I just can't. Others will join in soon, I'm sure. I wish you nothing but the best of luck with this drug.
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I appreciate your very thoughtful comments about joining a group even if there were no other Stage IV members, and I may go back to them and add it on later. My concern was being the "specter of progression" for them.
I have my first meeting with the Stage IV group next week and I'm looking forward to it. I know this sounds superficial, but it will be such a relief to show my face on a screen and chat with people without wondering if they're appalled by my very thin hair. The things I'm saddest about losing to cancer treatment are my dignity and privacy.
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thanks threetree for the comments…I am doing better with the heart attack…have cardiologist/oncologist doctor didn’t know there was such a doctor..I am at Levine cancer center and they have a doctor for everything lol
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@airlinegal I am so sorry about your heart attack! I hope that all is well now with no lasting effects. That is so scary!
I have been on Xeloda for over 8 years and it reacts adversely to foods that are high in folic acid. Those foods should be eaten in moderation because they are the reason for the bleeding, burning and infections in our hands and feet. I read about it early on, ignored it, and suffered greatly for 2 years.
Finally, when my feet were so bad that my onc wanted me to stop Xeloda, I remembered the folic acid advice. I had been eating huge spinach salads, and a lot of broccoli, etc. I cut way back on those and for the last 6 years, my hands and feet have only been dry. So just eat those high-folic foods in moderation and you don't have to stop eating them completely. I also stopped taking my multivitamins since they have folate.
I use Aquaphor at night on my hands and feet with socks and food service gloves. Aquaphor and socks during the day, and Gold Bond diabetic cream on my hands during the day. Remember to take the pills a half hour after you eat to avoid nausea. Xeloda has been very easy for me, now that I know how to eat while taking it.
Denise
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@eleanora Please update us after you have your meeting. Don't worry about your hair. Remember that early stage ladies are more likely to have lost their hair, too. Although I was the only Stage 4 lady in the group that I ran, I enjoyed the admiration that I received. And I also could share information about the various treatments that were available and how to deal with the side effects.
After my group was shut down, I was on a zoom BC group for several months during Covid. And it was kind of neat since we were all in different stages. But once the initial Covid scare was over, they stopped the Zoom and now just meet in person in Pittsburgh, PA…..35 miles from me. I don't like driving into Pittsburgh at all, so I don't go.
Denise
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I met on Zoom with the stage IV support group, and it was a great experience. It meets every other Monday on Zoom and once a quarter in person. There were a total of 8 - 6 regulars, another newbie and me. Hearing other people's stories and experiences really put mine in perspective. I look forward to the future meetings. Thanks for your encouragement!
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curious…I remember you from Ibrance days….alwYs loved your posts
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I find the zoom support group meetings through Breastcancer.org extremely helpful
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Just wanted to chime in again, since it's now been a month since I started Xeloda. I've noted some of this already in other threads, but thought I'd post here too. Labs at the end of last week show tumor markers falling, but not quite back into the normal range yet. The visit with my oncologist was positive and he tells me that the falling tumor markers are a very good sign the drug is working, and so is the fact that the lesion that showed up on my chest back in December, is largely gone now. He wants to give this 3 months, monitor tumor markers in the meantime, and then do scans in April. He says that if the response looks "robust" after doing the scans, he could consider lowering the dose, as I am just overwhelmingly fatigued. I'm feeling really lucky that so far at least, I haven't had any digestive or hand/foot problems. My big issue is the profound tiredness and drowsiness. It can be really disabling at times.
The oncologist cited a study done about a year ago that makes a good case for the one week on, one week off regimen, rather than the traditional two weeks on, one week off routine. Apparently, side effects are significantly less with the week on, week off plan, and it is just as, or more effective, than the traditional weight based, and two weeks on, one off schedule. That's all encouraging, and apparently relatively recent information.
Hope everyone else is doing real well, and enjoying the little signs of spring that are popping up out there. This can be a nice time of year.
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@threetree Great news! What dose are you on? I was changed to 7/7 after just a few weeks. The fatigue is bad, but I have had fatigue for my 24 years of chemo.
But since my BP also tanks after I eat, I blame it on that also.
Our snow is finally melting and it is 50 today!!!!!!!! I can't wait to start planting!
Denise
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@denny123 - Thanks for the nice comment re my progress so far. I'm on 1500 mg twice a day for daily total of 3000. Interesting to know that you also have fatigue after all your years on this drug. I'm noticing my blood pressure dropping after eating also, and it definitely makes the fatigue much worse. I get real drowsy then. My blood pressure never did this before Xeloda though, so I've been associating it with the drug itself. Enjoy your gardening!.
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@threetree I started out at 2,000. But I was taken off Xeloda for 7 weeks because my toe was badly infected, before I realized that I was eating too much of the high-folic foods. During those 7 weeks, I developed a spot in my liver, so I asked to go up to 2,500 a week.
I have postprandial hypotension, which I figured out myself (when none of my doctors knew what was wrong). I have to now eat smaller meals every 3 hours. Otherwise, my BP can go way too high before I eat! (I am weird). And you do have a point since I never noticed this before I started on Xeloda….. And I am also on Herceptin, which can also mess with our BP. You'd better see a cardiologist about your BP. I have and my heart is fine, but I am on BP meds.
Denise
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thought I was starting Xeloda in March but just started Feb 18th….3rd day and having a lot of stomach issues like cramps, constipation…has anyone else experienced these side effects…thank you for all the comments posted
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I had stomach pain and cramps for the first week, and on some days during the 2nd and 3 rd weeks ( that includes a week off). My stomach proper felt like a sore muscle that cramped at times. That doesn't happen anymore, and I started mid January. I've had occasional constipation, but overall I have so far managed to avoid any major digestive troubles. Hang in there, as it might settle out a bit over time.
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@airgal Yes, I had a lot of heartburn and colic at the beginning of treatment, to the point that I was prescribed an antacid.
These inconveniences disappeared when the dosage was reduced from 3600mg to 3000mg per day and taken 1 week out of 2 instead of 2 weeks out of 3. Starting new treatments is often difficult, but for me it was worth persevering; for the past year my PET scans have been clear.
Everyone reacts differently; giving yourself time is essential. Good luck to you for what lies ahead.1 -
soldanella and threetree…….thank you for the response…was getting worried because the cramps getting me up at night…will definitely hang in there
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@airlinegal - You might consider the possibility that you are dehydrated too. I'm finding Xeloda to be particularly dehydrating. This occurred to me again this morning, as I woke up with a very dry mouth, headache, some constipation, and stomach pain/cramps. I'm on my week off, and haven't experienced any of this for awhile, but it's been easing up since I've eaten and had a couple of large glasses of water (along with my usual morning coffee and tea!). I've experienced many more dehydration symptoms since starting Xeloda, than I ever had before. Again, just some thoughts that might be helpful.
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thanks threetree…..I haven’t been drinking enough water for sure
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