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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