Xeloda and Time!

[AutumnLove]

Soon starting Xeloda. Wondering who has been on Xeloda for an extended period. Is it possible to be on it for a long period? I guess that's what I'm wondering.Thanks in advance for any info/input and personal experiences shared!😊 🙏🫶

[Bettybuckets]

Hi autumn love dear, when I saw my 2nd opinion at DFCI, she told me she followed her own mother in law and that she got 8years out of Xeloda so that really encouraged me! I have been on it for nearly 9 months and I like it because I don’t have the fatigue I had on the CDK4-6s… used to have to lie down but not nap each day… now I go go go… but most people do suffer with HFS so I would get ready for that… start putting cream on your feet at night… dose reductions are pretty usual and I had to take an extra week off once which really helped me keep going. Good luck!

[TammyCross in reply to Bettybuckets]

Studies show that those who have Hand and Foot Syndrome reaction to Xeloda actually have a better response. Here is one:

karger.com/ort/article/37/1...

Sorry, it didn't do a live link. Trying the tite

Quality of Life under Capecitabine (Xeloda®) in Patients with Metastatic Breast Cancer: Data from a German Non-Interventional Surveillance Study

[Split in reply to TammyCross]

I have seen that study but contrary to what they say every single person in my hospital who was on it developed HFS grade 3 even and still failed on this medication after 6-12 months. Lucky those who can stay on it for years with minimal hf issues.

[Bettybuckets in reply to Split]

Will thank you for this interesting discussion… my feet haven’t cracked but I can’t wear shoes anymore to hot puffy… but my doc told me that she kept her mother in law on it for 8years!

[TammyCross in reply to Split]

I think 9 months is the average, so plus or minus 3 months (6-12) is about all you get. Too bad. I guess the question is how it worked when they were on it, not how long they were on it because that is typically limited. Unfortunately.

But we see people on this board have also haven't HFS and it has been effective. So...stats vs. anecdotes; have to be repeated to confirm findings and there is also the problem of where one falls in the stats. For example, 5-7% of people on Xgeva get osteonecrosis of the jaw. I fell into that 5% -- someone has to! - so it is irrelevant to my personal experience that 95% do not. Population stats may guide treatment, but they do not apply to each individual.

[Split in reply to TammyCross]

Yes, statistics don’t tell you on which side of the fence one falls. Hfs and ‘success’ on Xeloda, found the mention of that correlation in research strange or questionable. ‘Success’ in my hospital for those who managed to stay on it for up to a year was according to a mbc nurse, partial response, stable disease (my case as well).

[LDR1]

My oncologist told me the average time on Xeloda is 9 months but she hoped I’d get 1-2 years. Unfortunately I only got 6 months. Comparing this with the 8-year story below, it seems the answer is that it varies enormously and there’s no way to predict what your timeline may be. Hoping you get a long run! I thought it was a great drug.

[Flowerfriend]

I'm only on my 5th 28 day cycle of Xeloda, but very happy with it. No side effects with 1500 mg twice a day, one week on and one week off. Previous fatigue with Ibrance and letrozole, then Kisqali and fluvestrant relieved, largest liver lesion down from 7.4 to 7.1 cm and CA 27-29 down from 1500 to 1300. WBC and absolute neutrophils back to normal. Hoping for a long run with this one and hope you too have a good experience.

[TammyCross in reply to Flowerfriend]

Good to hear. I think I am headed that way because it looks like I won't be able to take Kisqali, which was next on the list. I had bad fatigue last year with Verzenio and anastrozole, so it is good to hear that is not a side effect.

According to a dermatologist, I already have a bit of hand and foot. My hands, especially finger tips and nails, turned red. She said that is part of it. A physiatrist found I have little sensation in my fingers. I had this when I started anastrozole, and it reared up again on starting exemestane last week.

I dare not hope to get more than a year from it, or only the average, since I seem to develop resistance rather quickly, or at least the average for each medication.

[Eliactida1955]

I started it about three months ago and it lowered tumor marker 4 times lower. No side effects at all -no. Hand or Foot. Peeling and no nausea briar the best with less fatigue.I hope to. Get a good. run . I wish you the best!🌹🙏

[Antares12]

Looks like I'm the only one to have a bad time on Xeloda, It lowered my hemoglobin considerably. I had two blood transfusions. I was on it for 5 months. My Onc took me off of it for 3 months. I'm back on it at a reduced dose and longer recovery period. It did really lower my tumor markers.

[AnnieAppleseed]

The key thing with xeloda is the dosing. If possible 1800 twice and not higher. Also use our Handout on reducing treatment toxicities - this drug is known to cause neuropathy. annieappleseedproject.org/u...

[AutumnLove in reply to AnnieAppleseed]

Ty

[hurricaneheather]

no personal experience with Xeloda. keeping "you" in my thoughts with this new line of treatment.

[AutumnLove in reply to hurricaneheather]

Ty

[Poet21]

Been on Xeloda for 2 years. 2500mg one week on, one week off. Some peeling and redness but did not affect quality of life. Failed on piqray and Ibrance 16 months.

[AutumnLove in reply to Poet21]

Ty

[AnnieAppleseed in reply to Poet21]

You did not fail, the treatment failed you - did not work. Hopefully you realize no fault involved. You are lucky xeloda hasn't caused harm at that high level. Years ago, at a SHARE educational meeting a doctor told us that "doctors in the know" used lower doses. FYI.

[Poet21 in reply to AnnieAppleseed]

Thank you for your reply, i will be following your nonprofit for additional information.

[13plus]

There are some lovely positive outcomes here of people taking this drug! That's very encouraging, I know this is on my next, or next-after-next line of treatment. Wishing you the best outcome on it too autumnlove!