Xeloda side effects: I have progression... - SHARE Metastatic ...

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Xeloda side effects

Gwynhubhome profile image
20 Replies

I have progression in my liver after being on Palbociclib and Letrozole for over two years. Xeloda has been suggested but I'm worried the side effects will make it impossible for me to care for my husband who has advanced dementia. It seems a rather drastic change of medication and I was wondering if there is anything else before actual chemo, which I believe Xeloda to be. I live in the UK and I'm aware some drugs are still unavailable on the NHS. Thank you in advance, dear ladies. This website is a great comfort as nobody can understand who is not in this situation. Gwyneth

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Gwynhubhome
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20 Replies
MyMiracle13 profile image
MyMiracle13

Hi. I have been on Xeloda for a year 3x day 500 mg per tab. No rest or off week and I have found it to be gentler on me than Ibrance. No serious side effect for me except upset tummy sometimes but thanking the Lord that I have not had mouth sores or hand/foot syndrome. We all experience different side effects and some meds are harsher than others. Give it a try and if you get bad side effects, I’m sure your oncologist will adjust the dose or try something else. Maria

8576 profile image
8576

I don't have any experience with Xeloda as I couldn't take it. You have gotten good advice from your first reply. Keep some Camomile Tea and gravol. You might not need them but they are good to have on hand. Wishing you all the best. You certainly have your plate full with your husband and Cancer. Be kind to yourself.

Cheers, June S.

Kellyonekanobe profile image
Kellyonekanobe

I have been on Xeloda for 5 months and unfortunately it has stopped working for me and my oncologists wants me to go on a chemo drip. I started with 4000 mg which was way too much for me. I'm a 120 lb female. Once the dose was lowered I tolerated it quite well. The first day I started, I had the hand foot syndrome. My skin on my hands and feet peeled. They were a little sore initially but I used bag balm and CeraVe hand lotion several times a day. It never occurred again after the first cycle. I was one week on and one week off. They tell us to avoid the sun and being in the sun and heat is uncomfortable. I believe you'll do fine and be able to take care of your husband. I wish you the best healing. Sending prayers, peace and love. Most important thing you can do is stay positive.

Gwynhubhome profile image
Gwynhubhome in reply toKellyonekanobe

Thank you so much for your advice - and good luck with new regime! One must stay hopeful.xx

Cureforever profile image
Cureforever in reply toKellyonekanobe

Hi. I just started Xeloda because of progression to the new bones and liver. No one told me to avoid the sun. I live in Florida. You mentioned that you were uncomfortable on the sun. Would you please explain. I am not staying on direct sun but avoiding sun in Florida is not possible. Thank you

Kellyonekanobe profile image
Kellyonekanobe in reply toCureforever

That's true. We spent last winter in Marathon. The info about avoiding the sun was not told to me by anyone but was in the information that came with the prescription. This past summer in Virginia Beach was so hot and humid, you'd feel horrible in the sun if you had no contraindications. Sometimes, when it was so hot, I'd feel like I was going to pass out. I'm out in the sun when it's not too hot, still always seeking shade. I'm loving our fall weather now. Praying for the best for you.

Cureforever profile image
Cureforever in reply toKellyonekanobe

Hi,Thank you so much for your reply. I understand. For how long have you been on Xeloda and how are you tolerating it? I started it a week ago because my Mets progressed to many new bones and liver. It’s my fifth line of treatment over two years. I just hope that the new drug Erso will go to human trials soon and willl cure us. You may read my post about ErSO Good luck to all of us!!!

Cureforever profile image
Cureforever in reply toCureforever

I am sorry I read your post one more time. I understand that you have been on it for five months until it stopped working. What is your treatment now? Thank you so much again.

Kellyonekanobe profile image
Kellyonekanobe in reply toCureforever

My Dr. wants to switch me to a chemo drip. She plans to explain the options at my appointment tomorrow. I had a four hour, 7 bag chemo drip with breast cancer 6 years ago and was hoping to avoid that again. She says there are several options that she will present. In the past you always lost your hair. Not sure if the options are better 6 years later. I'm going on a couple of trips soon, Oct 17 to visit my sister in CA and Oct 29 for a wedding in Jacksonville, FL. While in Jacksonville, I have an appointment with the Mayo Clinic for a second opinion. I' still taking Xeloda until I return on Nov 9th. I'm also taking Fenbendazole. She reluctantly agreed to allow me to wait until after my travels to start the chemo drip.

Cureforever profile image
Cureforever in reply toKellyonekanobe

Hi,Thank you for your reply. Chemo if is what scares me the most. I was also on chemo at the time of my initial breast cancer diagnosis and lost my hair. I believe that they also can take you off chemo and put you back on pill even the one you have been before if they stop the progression I hope chemo is different our days as it was before. Please keep me posted. I am in Florida now. Please get in touch with me after Mayo Clinic. Thank you so much. Good luck!!! Let’s hope that many new drugs are coming our way. Did the doctor talk to you about Afinitor? My MO wanted to put me on that one but then put me on xeloda because of liver met.

Best,

Marina

Kellyonekanobe profile image
Kellyonekanobe in reply toCureforever

No, I also have liver Mets which have been enlarging and new ones are showing up. Bc of that and my cancer antigens are going up randomly is why she wants me on the chemo drip.

Cureforever profile image
Cureforever in reply toKellyonekanobe

Thank you for your reply. Let’s pray that new drugs will come our way and chemo is not going to be for a long time. Also if it stops the progression, I believe recycling old treatments such as ibrance or verzanio may be the option. I am on Xeloda the second week. Feel very fatigue. Good luck for tomorrow.

Cureforever profile image
Cureforever in reply toKellyonekanobe

May I get in touch with you tomorrow to find out about chemo drip. I hope the options now are better than 6 years ago. Good luck with your appointment. Thinking of you

Kellyonekanobe profile image
Kellyonekanobe in reply toCureforever

Sure my appointment is not until 4 pm

Cureforever profile image
Cureforever in reply toKellyonekanobe

Thank you so much. Will be thinking of you. Good luck 🙏🙏🙏🙏

Cureforever profile image
Cureforever in reply toKellyonekanobe

Hi Kelly,How was your appointment yesterday? What did the doctor recommend?

Best,

Marina

Kellyonekanobe profile image
Kellyonekanobe in reply toCureforever

As it turns out, my Dr is off this week so I'm rescheduled for next Tuesday as I wanted to get info from her before my Nov 1 Mayo Clinic appointment.

Cureforever profile image
Cureforever in reply toKellyonekanobe

Thank you so much for your reply. I wish you the best Please keep in touchMarina

Cureforever profile image
Cureforever in reply toKellyonekanobe

Did you try Afinitor and Piqray? I tried Piqray and it was a good option for me based on mutations but I got horrible side effects. The doctor took me off. As I said before she wanted to put me on Afinitor with letrozole but then put me on Xeloda because of liver Mets. Good luck

Kellyonekanobe profile image
Kellyonekanobe in reply toCureforever

I was on Piqray for ten days with horrible side effects and day ten was in er with anaphylactic shock. I quit that right away!

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