Good Bye Xeloda

[CTGirl1962]

Turns out all my anxiety over taking Xeloda was warranted (for me).

I wanted to THANK all of you beautiful people who helped me through my decision. I appreciate ALL of you so much!!

I ended up starting it last Wednesday and my doctor lowered my dose to start. She put me on 1500mg twice a day.

I spent the entire day in the hospital on Saturday going through a myriad of tests. I was not well AT ALL.

I had completely lost my appetite. I was weak and dizzy and felt so nauseated. Turns out the Zofran also made me dizzy and I almost passed out. So much for anti-nausea meds to make you feel better.

What a horrible experience. My doctor took me off the drug yesterday and I’m starting to finally feel better.

Any tips on how to get my appetite back?

Has anyone had any other treatments AFTER Xeloda?

I was on Ibrance 125mg with Anastrozole before my 6 day treatment on Xeloda.

I am HR+\HER2- with NO TREATABLE mutations.

I’m scared (AGAIN).

🙏🏻🙏🏻🙏🏻🙏🏻

Jody

[NPmary]

So sorry for you! It's so hard to not panic after these kinds of experiences. I'm getting over my own difficult time - it's hard - l only say that so you know l understand. Let's try to give ourselves a bit of peace and time to recover ourselves.

Mary. 💕🪷💕

[CTGirl1962 in reply to NPmary]

I’m praying for you, Mary. With everything we are going through…some things aren’t fair. 🙏🏻🙏🏻🙏🏻

As long as we keep the faith. XO

[NPmary in reply to CTGirl1962]

Thank you.

[Gibby21]

Jody I’m so sorry I am into the middle of my second week and so far I’m doing good. I am nauseous but my anti-nausea pills are these little tiny things that dissolve on your tongue and for the life of me, I can’t remember the name of of them and they have not affected me in any other way. I do suspect side effect will start next week as my Nerlynx increases in dose from four pills a day to six pills. I can only tell you what my doctor told me if and when this medicine fails it’s IV chemo my mutation is that it mutated to H ER positive where is it used to be negative and more driven by estrogen now it’s not now it’s H.E.R. positive which I find very odd. Let us know how you’re doing.

[CTGirl1962 in reply to Gibby21]

I’m so happy you’re doing so well on this course of treatment. I’m hoping you get many years from it. The anti-nausea med you are taking is the generic form of Zofran. I’m almost sure of it. That’s what they gave me and it’s not working at all.

I’m hoping my next run will be as good as Ibrance. I had no issues AT ALL with that. 🙏🏻🙏🏻🙏🏻

Thank you for your support and help. 🩷

[Gibby21 in reply to CTGirl1962]

Ibrance worked great for me too no side effects at all but only worked about 10 months I was very sad when I had to move on…. Keep me updated!!

[Fiercefighter13]

Hi! I'm assuming you do not have the ESR1 mutation? That is such a common mutation mid treatment. If so, Elacestrant could be your next line, and it is very efficient. Be sure to ask if that has been looked at from your blood work. Easier said than done (I really understand), but try not to panic. One step at a time, there are still many MANY medications that can help you. Have you been on Fulvestrant yet? That does not require any mutation and can certainly be used by itself and many, many people have gotten years out of this treatment. It does of course require two brutal injections one in each butt cheek every 28 days.....but what's a shot compared to low side effects and good quality and length of life? I would take the shots, and I have in the past! If these two don't work then, Trodelvy is out there and while it does have side effects, I've been hearing many women on this site say it has been a Godsend. It also seems to work with lengthy time on it. I so very much understand your being scared. I feel the same way when my lines of treatment come to their end. Deep breaths, take things one moment at a time, you still have many options.....try to remember, cancer loves stress so try to free up your mind and charge forward! Onto the next line of treatment! My heart goes out to you because this kind of scared is awful and I've been there, and will be there again no doubt. Take good care of yourself, and do something nice for yourself. Go out with a friend, relax, pamper yourself, eat something delicious once your tummy completely settles down, watch a good movie, there are so many great distractions and sometimes that is just what we need in the midst of cancer chaos. Please keep us apprised on how you are doing and which treatment you go onto next. We all learn from one another, which makes this site our own little Godsend. Take care!

[CTGirl1962 in reply to Fiercefighter13]

Oh my!! What a wonderful response. You made my day!!! I’m taking all this in a forging ahead!!! I’m going to ask my oncologist about the fulvestrant. I’m also going to see if I can go back on the Ibrance WITH the Fulvestrant because we really don’t know what failed exactly. And, my cancer really didn’t spread. My scans are just a little “different”. 🤷🏻‍♀️

I do not have any treatable mutations. I have mutations, but none that have been studied. 😥

Thank you so much for your beautiful words. I will keep you updated!! 🙏🏻🙏🏻🙏🏻🙏🏻