At a crossroads

[Garlicgrower]

Greetings All,

I have recently been scanned and increased Mets in bones and a new small spot in my liver have been found, eliminating me from my Phase Ib clinical trial that had worked from November 2021. My earlier first line of treatment, Ibrance Fulvestrant failed after about 8 months.

I am now comparing Xeloda with Afinitor and wondering if you all have any information to share about side effects from these medicines. Any ideas are welcome!

[Kerryd22]

I’ve had Afinitor but not Xeloda. That awaits me in the future! I found Afinitor was easy enough although it did cause me problems with eating. Food tasted bitter and I didn’t enjoy anything I ate or drank so I stopped eating and drinking. It was listed as anorexia on my file because I chose not to eat. I did lose weight but I had weight to lose. I didn’t get the mouth ulcers which 60% of users do but I did get liver inflammation which about 1% (from memory) get.

There’s quite a few side effects but those are the ones I remember.

[Garlicgrower in reply to Kerryd22]

Thanks Kerryd22 for your response. According to my onc, Afinitor is very close to the drug I took on the clinical trial that stopped working in June. I'm sorry to hear of your issues with food; food is quite important to me; golly, I don't know what I would do if I couldn't taste/enjoy food! Be well and thanks again.

[PJBinMI]

Is the Afinitor option with another anti-estrogen med? My first thought was that it isn't used alone. I've been on Xeloda for most of this year, since cancer cells have changed from E+ to triple negative. It's an oral chemo and I get it by mail from a specialized pharmacy. The initial dose was 2000 mg twice a day, 14 days on, 7 days off. I could not tolerate that--hands bright pink and very tender. Using the keyboard was painful plus I got skin splits on about half my fingers. Have had the dose reduced twice, am now on 1000 mg twice a day, 7 days on, 7 days off. I'm on day 7 of days on right now. I think this is cycle 3 of this dose. My hands look and feel alot better. My onc prescribed a med for nausea when I first started Xeloda and I took it just the first two days as my tummy felt a little off, but have not needed it at all since then. We each have our own reaction to any med but I've found this dose pretty easy to be on. Cancer is stable. I'm a long timer with MBC, over 19 years, and this is just my 4th med, so I've done exceptionally well.

[LDR1]

hi Garlicgrower, I was recently on Xeloda and it worked well for me while it lasted - we had to do some tweaking to find the right dosing schedule to minimize foot effects but otherwise no prob. You can use the search function on this web page to find other Xeloda stories. Best of luck with your next step!

[Garlicgrower in reply to LDR1]

Thank you, LDR1 for your response. How long did it last for you? And, did you experience foot neuropathy? Thanks for your suggestion to search for other Xeloda stories!

[LDR1 in reply to Garlicgrower]

I was on it for 7 months - had hoped for more, but it was good while it lasted. I had some minor foot pain (soreness & redness of the fleshy bottoms of my feet) around day 10-12 of the 14-day cycle so we switched to 7 days on / 7 days off which eliminated the foot issue, but allowed progression.

[Fiercefighter13]

Hi there! I have been on Xeloda since January and it has worked the miracles none of the other meds did. I was on Ibrance/Letrozole, Verzenio/Fulvestrant, Piqray, and Fulvestrant/Anastrozole. These were all relatively short lived and never got my markers down very far, and toward the end of these other meds my markers skyrocketed. I had progression into my stomach and colon which none of the scans picked up on. Having my first FES PET next week. My markers are now actually in normal ranges for the first time in four years. Xeloda is pretty easy to tolerate but finding the right balance of dose and side effects does take some patience and persistence, but it seems to work out for most of us. I have not taken Affinitor, for some reason my doctor is not a great fan of this medication, she says the side effects don't warrant the misery many women go through on it and it's usually very short lasting. I hope you find the answers you need to make the right decision for yourself!! Take care!!

[Garlicgrower in reply to Fiercefighter13]

Hi Fiercefighter13, your post inspires me! However, I was trying to put off any chemo option and may have found a clinical trial across town that fits my germ line results! But I may not qualify as the only mets in any organ is in my liver and it's only ,7 mm; something to be happy about really! We will see; I may start Xelonda next week...thanks again for your kind words...