What's next after Xeloda?

[LDR1]

Hi all, just got disappointing CT scan results showing strong progression after only 7 months on Xeloda. I've messaged my oncologist to find out what the next options may be so I can research them before our appointment. Would love to hear from anyone who has gone to the next step after Xeloda - what did you take and how did it go. On quick search it loks like Vinorelbine and Enhertu may be options? Thanks in advance ... 😢

[Silver126]

hello! Sorry for your bone progression. The choice is related on which organ progression is and if it’s moderate or not.

[LDR1 in reply to Silver126]

hi Silver126, thank you - right now all the visible cancer and the progression is in my liver (not bones).

[Kelly001]

So sorry for this sad news! Hugs

[Here_now]

Hello,I'm sorry to hear about the change of treatment for you. This will be my fourth change since diagnosis, but I'm still finding it tough to let go of the last treatment.

I'm also about to move on from Xeloda due to progression (mine not major and still in bones but stark progression all the same) I'm due to start Enhertu next week. My oncologist said it has given great results.

[Widdershins3 in reply to Here_now]

So far, Enhertu has had the most pronounced good effect on my assortment of mets. It even completely did away with some tiny brain mets, which amazed me. I'm missing it, but got switched off it when I got those ground glass opacities in my lungs. I wish you a long time with it and a huge drop in the CA-15 test numbers.

[Silver126]

That’s what happened to me too. I tried Afinitor +Exemestane but they didn’t work, then Caelyx which worked for five months. I’m on Abraxane now

[Hopeful4Cure]

Yep, here too. Although here_now might be skipping vinorelbine. All I know is that my doc tried to keep me off the worst treatments. Xeloda did nothing, vinorelbine helped for a few months and just had my first treatment of enhertu. About 3 hours first time iv. No issues at all. This was last Tuesday the 20th and I flew to the states on Thursday. Not overly tired, just the norm of jeg leg. Still ok today. See doc on the 11th of July - after blood work and eco cardio on the 10th. Enhertu seems to be the best choice for those that are low HER2. Blessings

[Here_now in reply to Hopeful4Cure]

Vinorelbine? My oncologist has never mentioned that one to me...hmmm, will bring it up next time.I hope Enhertu continues to go well and lasts long for you.

[Widdershins3]

I hope you qualify for Enhertu. It sent my cancer numbers into free fall for many months and gave me more time and some hope at last. Unfortunately, my oncologist thinks I developed a dangerous side-effect (ground glass opacities in my lungs) and took me off it. I was devastated.

Now on Xeloda and the nasty hand/foot side effect is kicking in. I'm so spoiled by Enhertu's lack of most side-effects that it's been depressing. Fingers crossed that I can get back on it with the prednisone treatment that a pulmonologist on my team is trying this month.

[13plus in reply to Widdershins3]

I’ve worked with someone who got that condition. Knowing what I know of how much it effected her ability to function I wouldn’t personally take any risk of making that worse by staying on the drug that caused it. She really hard a hard time breathing - which made her extremely weak. I’m sorry that you got that and hope they can help you with it

[Pbsoup]

Hi. I am on Orserdu because I have the ESR1 mutation. It's brand new, so I feel a bit like a guinea pig, but so far so good! I was sad to leave Xeloda after a good 2 year run, but am happy to have my hands back. I celebrated by getting a manicure!

So far I feel great on Orserdu. Hope it lasts!

[LDR1]

Thanks everyone for the info and encouragement! I talked to my oncologist today and the verdict is that we’re going to try Piqray next (did not see that one coming…) and save Enhertu & others for later. Fingers crossed this will work for a while! 🙏🏼🙏🏼

[Best521 in reply to LDR1]

Best of luck on Piqray. Same thing happened to me, I never saw the Trodelvy trial coming and decided to save the Xeloda and others for later. It is a good lesson to learn with this disease, be open to possibilities, you never know what options may be out there.

[13plus]

Best of luck with the Piqray! I’ve just had to change drugs too and it’s a challenge to work through the fear and depression of our new situations , so I feel you! What treatments did you have before the Xeloda (which may be my next)? I just started Afinitor yesterday

[LDR1 in reply to 13plus]

hi 13plus , I’ve been on Ibrance (18 months), Verzenio (3 months), and Xeloda (7 months, boo hoo, was hoping for more). Starting Piqray next week …🤞🏼🤞🏼

[Kaylab]

I’m on piqray for 1 year 8 months. Have Ned, It working for me. Worked through the side effects as they occurred. I want to stay on it as long as possible. Good luck.

[LDR1 in reply to Kaylab]

thanks Kaylab , that is really encouraging to hear. Congrats on being NEAD and I hope that will last a long time!!🙏🏼