Ibrance and Letrozole no longer working - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

6,794 members8,412 posts

Ibrance and Letrozole no longer working

Jhshl512 profile image
20 Replies

Hello everyone. I recently had an MRI of my pelvis. It showed the cancer is now showing more tumors. I start radiation on Tuesday. I will then be put on Xeloda, when I am finished with radiation. I’m really freaking out when I read about all the side effects. Is there anyone who can enlighten me on all of this? Thank you all for your advice. Praying every day🙏🏻🙏🏻

Written by
Jhshl512 profile image
Jhshl512
To view profiles and participate in discussions please or .
Read more about...
20 Replies
MyMiracle13 profile image
MyMiracle13

I have been on Xeloda since October 2020. I take 1500 mg daily no week off just continuous. The only break I had was when I had my Covid vaccine because my onc said I should take 1 week off before and after the vaccination. Xeloda has worked well for me and I hope it will continue to work for me (I have my PET/CT scan on Monday July 12.) So far the side effects for me are very manageable. Sometimes indigestion but not often and that’s about it. Fatigue on some days but also not often.

Jhshl512 profile image
Jhshl512 in reply toMyMiracle13

Thank you for letting me know. I’m so worried about nausea. I guess I just have to wait and see🙏🏻

MyMiracle13 profile image
MyMiracle13 in reply toJhshl512

I was blessed not to have experienced nausea or hand and foot syndrome. I pray you will be okay with Xeloda.

Jhshl512 profile image
Jhshl512 in reply toMyMiracle13

Thank you. I was very nauseous on ibrance, but praying this will be different

love2golfwell profile image
love2golfwell in reply toMyMiracle13

Thank you for sharing positive Xeloda information. I hope it continues to work for you as well without many side effects.

Iwasborntodothis profile image
Iwasborntodothis

I am starting round 8 next week. I am on my off week right now - full dose 2 x a day. My feet and hands peel- get ahead of it buy bag balm and OKeefes products and keep your hand and feet cool (this isn’t easy in Phoenix). I have waves of nausea so I eat tiny snacks all day. My eyes tear a lot and I have to moisturize here too.No other real issues although I must say for some reason my week off is the worst. I guess at the end of the dose I am just worn out BUT my Ca-15 numbers are plummeting and my other previous treatments never did this. I also had radiation last summer on my hip and it wasn’t so bad but for the burn in an uncomfortable spot. Hope this makes sense and helps.

Iwasborntodothis profile image
Iwasborntodothis in reply toIwasborntodothis

Also buy some Pepcid this helps my acid reflux immensely

Jhshl512 profile image
Jhshl512 in reply toIwasborntodothis

Thank you for the information. I’m trying to stay positive. Some days I just can’t and I feel that’s ok. You know what they say, “it’s ok, not to be ok”

Iwasborntodothis profile image
Iwasborntodothis in reply toJhshl512

Amen I get it - changing meds is the worst

Thrifty51 profile image
Thrifty51

I have been on Xeloda since November of 2020. I started with 4000 mg per day and that was way too much for my body but I believe it was a good start at controlling the mets. I tried a few different dosages and have landed on 1000 mg (500 morning and 500 evening) with weedends off. This lower dosing is referred to as metronomic dosing .This appears to be working well so far. My tumor markers have reduced from about 750 to 78. I will have a Pet/CT scan later this month.

Be sure and get the onc to prescribe zofran or something similar for nausea. Stomach issues have been my only problem and that has greatly subsided with the lower dose.

Jhshl512 profile image
Jhshl512 in reply toThrifty51

Thank you for letting me know. I do really love all the advice I have been getting!

SeattleMom profile image
SeattleMom

Hello!

I started Xeloda about a month ago (just finishing second cycle.) Best tips from me:

1. Always take med on a full stomach to avoid nausea followed by large glass of water.

2. Brush teeth after EVERY meal with toothpaste called SQUIGLE (available on Amazon.). It is the BEST toothpaste if you begin to experience soreness inside your mouth.

3. Follow up with a capful of PREVENTION mouthwash (also available on Amazon.). It is the ONLY mouthwash I have found that does not sting.

4. Keep feet moist over night with Bag Balm, and cover with socks. Also moisturize your hands after every hand wash.

For me, so far, so good! Hope it does the same for you!! 💗💗🙏🏻🙏🏻

Linda

Jhshl512 profile image
Jhshl512 in reply toSeattleMom

Thank you for you list of suggestions! They are very helpful!

love2golfwell profile image
love2golfwell

I have never been on Xeloda, but I have had 2 sets of 5 treatments each of SBRT to lesions in the pelvic area. Both sets of treatments went very well. The first time (in November) I had some sciatic nerve pain for a few weeks after the treatments but they did not stop me from being active. The second time (in March) I did not have any pain or side effects. The treatments were only about 10-15 minutes each once I was set up. Stay strong, keep positive, you've got this. I will keep you in my prayers. Hugs

Jhshl512 profile image
Jhshl512

Thank you🙏🏻🙏🏻

MyMiracle13 profile image
MyMiracle13

Thanks so much Sandra. Will let you know the results.

RLN-overcomer profile image
RLN-overcomer

Sister/warrior: I can only offer you my prayers, that you will have a great result from using Xeloda, and that there will be no adverse side effects.🙏 Amen! I do send you a huge virtual hug.

Jhshl512 profile image
Jhshl512 in reply toRLN-overcomer

Thank you! The virtual hugs always help! The best to you as well

RLN-overcomer profile image
RLN-overcomer in reply toJhshl512

Remember who you are😇, and who you were created by😀. You are a Warrior, a Victor, and a Conqueror. Amen!!!

Jhshl512 profile image
Jhshl512 in reply toRLN-overcomer

What a beautiful way to put things into perspective for me! Thank you🙏🏻

Not what you're looking for?

You may also like...

Ibrance no longer working

So oncologist said we would change to new meds to replace a Ibrance and Femora/Letrozole. Makes me...
rpeacock profile image

Ibrance plus letrozole working

I’ve been taking Ibrance 75 mg two weeks on two weeks off for 3 1/2 years Took a while to get the...
myrtice profile image

Ibrance and faslodex no longer working

I’ve been on Ibrance and faslodex for 15 mo. Everything was going great and I had few side effects,...
Shafight profile image

Letrozole and Ibrance is it working?

Hi ladies, I have found such comfort these past 6 months reading all your posts and stories. My mum...
Ssm2019 profile image

Ibrance, Letrozole and Denosumab

Hi ladies, after feeling down, having chest pain and feeling tired all the time I now feel ok....

Moderation team

See all
Jslanovich profile image
JslanovichAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.