All about Xeloda
Comments
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My wife was on xeloda for approx one year, back 5-6 years ago. It was for her first treatment for metastatic spread to her liver. She had extensive liver involvement. It never quit working for her, and she switched to palbociclib which she stayed on for 4-5 years, then abemaciclib, which worked initially, but then tumor markers started rising, and her ascites came back.
So now we have circled back to xeloda, thinking it should for sure work. She has finished 3 - 3 week cycles, and still her tumor markers continue to rise. Anyone have xeloda take longer than that to work? Anyone combine it with something else, like vinorelbine?
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Anyone doing a combo of xeloda with something else? Combo's I've read about include aromatase inhibitors
and vinorelbine.
https://ascopubs.org/doi/abs/10.1200/JCO.2018.36.15_suppl.e13122
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Concerned husband, I am in a similar state. Just finished my 3rd round and tumor markers are still rising. ALT back to normal but AST still high but lowering. RDW-CV high and rising. Everything else is in the normal range. Not sure what all that means but concerned about the CA-27-29. I meet with my onc soon to review.
I heard we should finish the 4th round before making decisions. Has anyone else experienced rising tumor markers this late and still had success? No hand/foot syndrome but I have backed off folates.
Thank you
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Husband 11 - Finished up 1st round of Xeloda. Am doing this in combination with Faslodex, monthly injections.
Sore hands, feet & mouth feels like it's burned. All normal reactions the doctor says. She wants me to stick with it for at least 3 rounds to see if tumors shrink. I'm taking leave of absence from doing walking tours because of my foot discomfort. My face has aged 10 years — pealing skin is revealing all my age spots! And I'm so tired.
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Hi @annieliz63, we are sorry for all of the discomfort you are experiencing. For the hand-foot syndrome you mentioned, this article discusses ways to manage it as a side effect: https://www.breastcancer.org/treatment-side-effects/hand-foot-syndrome
Did your doctor prescribe you anything or refer you to palliative care so they could help you manage some of the side effects that you are experiencing from the Xeloda? It could bring some additional comfort.
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Hi,
This is the first time I post a comment although I am visiting this forum already for a while. I was diagnosed with stage 4 BC 4 yrs ago. I am also taking Xeloda since September last year and was having serious HFS with painful red hands and cracked dry skin. I use 10% urea cream which helps a lot, but what helps more is combining the cream with taking 1 omega-7 capsule each day.
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Im now on cycle 5
Was on 2 weeks on one week off Started on 3000mg then reduced to 2000mg by cycle 4
Mouth issues cleared up on reduced dose by end of cycle 2 and Hand n foot issues almost disappeared by cycle 5
Cycle 4 ...CA 15 dropped 117 to 99
Just Started increased dose 3000 mg one week on one week off
minimal probs with feet and hands
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Hi again
Also using Voltaren gel on feet ...some redness minimal pain ..so has reduced inflamation
Cheers Bright
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Agree, 7/7 schedule is so much easier to tolerate! Plus I feel like trial and error with creams,diet etc and finding what works for you is the key. It usually is a rough start for most but seems to do a pretty good job holding the disease stable also.
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@lucies - We're sorry you had to join us for this reason, but really glad you did! Thank you for your comment and recommendations! Let us know if there's something we can do for you.
Best,
The Mods
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lucies,
Your comment of taking one Omega 7 capsule to help reduce hand/foot symptoms is interesting. I also recently started using a lotion with 10% urea (Eucerin Roughness Relief) and alternate with Udder Balm. Like cookie54 says - a lot of trial and error.
lucies and bright55,
Thanks for posting your updates. Would you consider posting your diagnosis, treatments, etc under your signature?
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topical diclofenac may be helpful for the hand and foot syndrome.
Here is an abstract of the study they did.
https://meetings.asco.org/abstracts-presentations/226783
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perky2020,
Thank you for posting the link to the study on diclofenac for H/F symptoms. I had not seen it before.
Wendy
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Weninwi
there seems to be a problem with showing my old treatment profile...info has been updated just not allowing view ...very onerous have messaged admin
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Here is a report on a phase 2 trial of combining capecitabine with an aromatase inhibitor:
Also a study of capecitabine combined with tamoxifen:
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Hi Weninwi,
I've added my diagnosis and treatments. I am a BC patient since the year 2000, was pregnant of my youngest child at that time.
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@bright55 We just sent you an email with instructions to help you get your Post Signaure to show. Let us know if you still need help!
—The Mods
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Practice-changing: 1) Xeloda 7/7 better than 14/7 in terms of efficacy/patients staying on longer. 2) Diclofenac for hand/foot syndrome:
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I have been on Xeloda for 5 1/2 years with Herceptin.
I had bad hand and foot pain and infections for 2 years. But then I remembered that I read to be careful with foods high in folic acid and folate. I now eat those only in moderation, if at all. And my hand and foot pain and infections have ceased. The infections come from within the body, and topical pain relievers might help. But now my feet and hands are only dry. I use Aquaphor.
Voltarin should not be used long-term. It is safer for me to just eat less spinach, broccoli and avocados. My folate blood levels are perfect.
Urea is an exfoliant so be careful with that.
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Hi all,
Popping in here to post this new study you may find helpful:
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Interesting article. The literature that comes with Xeloda cautions against using any folic acid supplements, and multivitamins also contain folic acid. Therein lies the clue to the folic acid problem. (At least for 75% of us anyway).
Changing my diet ceased all of my pain. Clobetasol, Ammonium Lactate, Voltarin and Urea didn't help a bit. My ice socks and mittens did help temporarily with the pain, until they were no longer cold.
I found that I really don't need spinach and broccoli in my life.
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Another question..how would a topical ointment for pain keep us from getting bad toenail infections? The infections come from within the body and I blame that for the reason why I have lost 4 toenails permanently.
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End of my wife's fourth cycle of xeloda, and her tumor markers continue to rise. This isn't looking good for her return to xeloda.
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Husband11- have her TMs been pretty reliable- mine seem to be - although I have heard weird stories of people's rising for awhile before they start to lower. Does your MO wait for scan proof of progression?
I am hoping for the best for her!
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She's never had progression on a scan, so we can't say if tumor markers are accurate, other than that she has had 5 plus years of stability on scans, and at the same time no prolonged or substantial rise in tumor markers. Her onc plans to stay the course until the next scan. She has a tips operation scheduled for about a month from now, so its certain there will be no new medication between now and then, as the onc wants her off xeloda for a week prior to the operation.
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Quick question - I seem to have dodged the big side effects but suspect Ive got a few of the 'rarer' ones. Last two nights my legs have been on absolute fire (muscle wise) from the pelvis down which came on suddenly and then went suddenly after I massaged a bit. Also - really really weepy and rage-y starting day 8, like a switch was flipped.
The leg issue I think was due to having a lower water intake for a few days and dissipated as soon as I realized I was lagging and chugged a few litres last night. But the sadness/rage still seems to be simmering a bit underneath. Is that normal? I figure I better flag with the onc at our next chat (looking to go to 7/7 anyway), and have been tracking side effects.
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sondraf,
Maybe unrelated, but …..have you had your B12 level checked? I became very weepy while on Verzenio. It was a change for me that I couldn't explain, and I eat meat, a good dietary source. Asked my primary doctor for a Vit B12 level - it came back well below normal. B12 deficiency can result in "neuropsychiatric" symptoms like depression, anxiety, psychosis, etc. I took sublingual B12 supplement and symptoms resolved.
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Husband11-sorry and I hope that the markers start to decrease. Mine have never been accurate, so they are ignored.
Sondraf-that is a new one to me. Might be unrelated to your treatment, and dehydration could be the problem. No idea about the rage. Definitely something to look into.
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wenn - thats a good thought. I had low B12 last winter and was in the dumps then and just feeling sub optimal. I got the course of shots and it perked me right back up, but then the 3-month top ups at the GP never got scheduled so I could very well be low again. I can call my nurse this coming week and flag it with her so there is time to get the extra panel on the order before the chat on the 31st.
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