All about Xeloda
Comments
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I know I can go back and try to find this on the thread, but easier for me to just ask. Is the cream many of you like called Udderly Smooth body cream?
Thanks.
Stefanie
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Thanks, Lita! Your advice and support are spot on, as always. Hope you're feeling less pain every day. Sending hugs and prayers to you and everyone else on this thread!
Marti
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First scan since starting Xeloda on Thursday, the fatigue is getting to me but pain is better so hopefully that is a good sign. I am worried after failing Affinitor so quickly
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Stephanie - I read use the Udderly Smooth WITH Urea. I am just now buying mine.
Amy - Thank you for the tip. Onc is beginning me on 1000 mg 2x day. Working up slowly.
Beginning when my neutrophils and WBC are higher, they crashed from Ibrance / Femara. So did I. Perking up a bit, some hunger now too.
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So much experience with Xeloda draws me back to this thread occasionally, even thpugh I already moved on.,
Steph, you can also try q10 eye cream of sebamed & nivea for hfs. No medical cream helped but this did!
As the eye is the most delicate organ, this specific cream is designed accordingly. So, it's performance didn't surprise me. I found out it actually worked when put some on my hfs areas on my face ( yes
I had hfs on the face!) it worked Quickly. Worth trying. No dairy with Xeloda sisters, I keep saying this. It really worked for me for 5 full years
Hugs
Ebr
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wow Ebru.5 years! My ONC says it's usually two, so that's awesome. Pray pray pray.
Thanks for the recommendations.
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Only day 3 and the already thepalms of my hands are warm and starting to feel leathery. Is this in my head, or normal for X. ?
Stefanie
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Ebru, thanks so much for the tip re. dairy. I don't use milk, but I do eat natural Greek yogurt and cheese. Hmmmm.... maybe I need to give some serious thought to cutting those out?
I don't recall if it's been mentioned here, but adding or increasing your Vitamin E intake was recommend on the FB Xeloda page, and I have found it seems to make a difference. There's research to support the theory: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC30763... I've always taken 400 IUs but have upped to 800-1200, depending on how often I remember to take it when I haven't recently taken my med.
I have also had great results keeping HFS to a minimum with a product from my own inventory called Super Salve. It's totally natural, based on Native American herbal lore. It's greasy (like Vaseline) and has a strong herbal smell, so I only use it at night with socks, and something lighter for the day.
I'm in my 3rd Xeloda cycle, but was happily shocked when my TMs dropped 400 pts. after cycle #2. Deanna
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dlb, I've been on Xeloda for 12 months and have not had to give up dairy at all.
Good to know that some have had 2 to 5 years on Xeloda.
BTW, I've had a bit of hfs on my face too, but it's been very minor and manageable.
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Deanna, Super Salve seems to have an array of products. Do you know which one I should get?
Stefanie
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Stef, I will gladly send you a tin of it. Just PM me your address.
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Can't remember if anyone posted this up previously, but its about reduced dosages of xeloda, as implemented by University of Southern California where they dose xeloda at 1000mg twice daily, regardless of patient body weight and height:
http://www.gotoper.com/publications/ajho/2015/2015...
Background: The FDA-approved dosage of capecitabine, 1250 mg/m2 twice daily, is often associated with treatment- limiting toxicities. Clinical experience and published reports suggest that lower starting dosages of capecitabine can be as effective as the approved dosage. In this retrospective analysis we compared the efficacy of significantly lower dosages of capecitabine with the FDA-approved dosage, using previously published results as comparators. Patients and Methods: We performed a retrospective cohort analysis of patients treated at University of Southern California hospitals who received capecitabine as the first, second, or third line of chemotherapy for metastatic or unresectable locally advanced breast cancer to determine the progression-free survival (PFS) associated with low starting dosages. Results: Patients (n = 84) received a median capecitabine dosage of 565 mg/m2 twice daily, mostly administered as a flat dosage (not adjusted for body surface area) of 1000mg twice daily. The median PFS among patients with measurable disease (n = 62; 74% of patients) was 4.1 months (95% confidence interval, 2.9-5.7), which was similar to the median PFS values (4.4 months; 4.2 months) for single agent capecitabine reported in the 2 major trials with similar eligibility criteria. Furthermore, only 2 patients (2.4%) discontinued capecitabine due to toxicity, supporting our hypothesis that starting treatment at low dosages minimizes side effects while preserving efficacy. Conclusions: Our results provide evidence that very low dosages of capecitabine are efficacious in treating metastatic breast cancer. Large-scale randomized, controlled trials testing lower starting dosages of capecitabine are necessary in order to firmly establish an optimally effective and well-tolerated dosage. Key words: Capecitabine, chemotherapy, metastatic breast cancer, drug toxicity, dose intensity - See more at: http://www.gotoper.com/publications/ajho/2015/2015feb/efficacy-of-very-low-dose-capecitabine-in-metastatic-breast-cancer#sthash.79FDJKYD.dpuf
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A clinical trial that should have been completed last December, testing out the 7 on 7 off dosing schedule. Unlike the above, that explores lower dosages, this trial employs a higher flat rate dosage of 2000mg twice daily:
https://clinicaltrials.gov/ct2/show/NCT02028494?te...
results not yet available.
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Hi all fellow Xeloda takers. I am officially off Xeloda as of today and start Afinitor/Aromasin next week. I am more than disappointed as I was hoping to get 2 years out of this drug. (Just an arbitrary time frame I came up with!) I ended up getting 14 months which is not ideal, but not bad either.
Good luck to all of you! I really like this drug and hope all of you can take it for a very, very long time. I will miss this thread and everyone on it. This is a good group!
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Well I too progressed on Xeloda, will be starting Doxil in next few weeks. unless it changed to HER2+ then it is a whole new ball game
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Yet another variation on xeloda dosage and timing, This time, 1500 mg/ day, divided into three equal doses (500mg 3x a day), continuously. No break. They call it metronomic dosing. Apparently produced good results, and less side effects.
https://www.ncbi.nlm.nih.gov/pubmed/21775129
Eur J Cancer. 2012 Jan;48(1):24-9. doi: 10.1016/j.ejca.2011.06.040. Epub 2011 Jul 19.
Efficacy and safety of low-dose metronomic chemotherapy with capecitabine in heavily pretreated patients with metastatic breast cancer.
Fedele P1, Marino A, Orlando L, Schiavone P, Nacci A, Sponziello F, Rizzo P, Calvani N, Mazzoni E, Cinefra M, Cinieri S.
Author information
Abstract
AIM:
Registered dose capecitabine monotherapy is active against metastatic breast cancer (MBC), but retrospective analyses indicate that lower doses may be as effective and better tolerated. This study was conducted to assess the safety and efficacy of metronomic capecitabine in heavily pretreated patients with MBC.
PATIENTS AND METHODS:
In this phase II study 60 MBC patients received continuous metronomic capecitabine monotherapy (1500 mg once a day). Primary endpoint was clinical benefit rate, secondary end points were clinical benefit rates (CBRs), tumour response rates (RRs), overall survival (OS), time to progression (TTP), duration of response (DOR) and toxicity.
RESULTS:
Fifty eight assessable patients received two or more 28-day cycles of metronomic capecitabine. The CBR was 62%. Median DOR was 7 months. Median TTP and OS were 7 and 17 months, respectively. Two partial responses and 7 cases of stable disease were recorded in 13 patients who had previously received capecitabine intermittently (2000 mg/m(2)/day on days 1-14 every 21 days) as first- or subsequent-line treatment for MBC. Grade 3-4 adverse events were uncommon; haematologic toxicity was infrequent (5%) and consistently mild.
CONCLUSION:
This regimen of metronomic capecitabine displayed good activity and excellent tolerability in MBC patients, including those who had previously received the drug at standard doses.
Copyright © 2011 Elsevier Ltd. All rights reserved.
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Wow, Timothy, that's encouraging. I'm still 1500 2x per day 7 on and 7 off. After Monday's scan, I had a little progression to more ribs, and lymph nodes under left arm are still active along with lumbar spine, but MO is staying the course with Xeloda 4 now.
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There is a metastatic breast cancer trial currently recruiting. They use xeloda plus another chemo drug for around 6 weeks, then, switch to metronomic, low dose xeloda. Results are supposed to be in, September 2018. There is a lot to be learned about optimizing currently employed drugs.
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Thanks Timothy, that is so interesting. I was just thinking about whether people ever just stay on it continuously as I find that even on my low 1000 mg 2x a day dose I find the week on week off cycle physically disruptive on both ends. Not debilitating but noticeable.
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I found a couple of case reports where they put elderly women ( in their 90's) on xeloda, low dose, continuous, metronomic as they call it, for palliative treatment, expecting the women to live only a couple of months, but wanting to give them quality of life. Instead they ended up living for a couple of years, tumors shrinking, and they died of other causes.
Also found a case where a woman had a rare spread of her breast cancer to the meninges of her brain, once again, expected to live for only a short while, a few months with treatment. They put her on low dose metronomic xeloda, and she is still alive years later. They believe the metronomic dosage encourages the immune system to attack the cancer, encourages dormancy of the tumor, and that it also suppresses angiogenesis, the formation of new blood vessels, necessary for tumor growth.
Hard to say whether its better than the current on / off dosing regimen. Clinical trials will eventually give us the answer.
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Timothy,
I think a mistake that some ONC's make is that a higher dose is better, when just maybe a lower continuous dose might be more effective. My sister has been on Xeloda since April 2013. Still working. Lower dose than original recommendation. Even lowered the amount of days on and off. 7 on, 14 off, 5 on, 7 off, etc...
Interesting reports on different dosages. I will mentioned this to her ONC. The oil of Oregano is interesting. Thanks.
Mark J.0 -
Timothy, I'm very interested in that second case you mentioned (the meninges). Do you have a link to that?
Thank you!
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Link to full case report:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53402...
Abstract below:
Am J Case Rep. 2017 Feb 28;18:208-211.
Metronomic Capecitabine Effectively Blocks Leptomeningeal Carcinomatosis From Breast Cancer: A Case Report and Literature Review.
Maur M1, Omarini C1, Piacentini F1, Fontana A1, Pettorelli E1, Cascinu S1.
Author information
Abstract
BACKGROUND Meningeal carcinomatosis is a rare complication in breast cancer patients. At present, there are no defined guidelines for its management. The efficacy of systemic treatment seems to depend on its ability to cross the blood-brain-barrier and its interaction with tumor vasculature. Metronomic chemotherapy is a known modality of drug administration able to inhibit tumor angiogenesis. CASE REPORT We present a case of symptomatic leptomeningeal carcinomatosis from breast cancer successfully treated with capecitabine. Based on the hypothesis that angiogenesis contributes to neoplastic meningitis, the patient was treated with a metronomic schedule that provided long-term clinical benefit with a very low toxicity profile. CONCLUSIONS To assess the real impact of metronomic chemotherapy in patients with meninges involvement, a phase II study will be starting soon in our institution. A review of the literature concerning the management of meningeal carcinomatosis is also presented.
- PMID:
- 28242865
- PMCID:
- PMC5340224
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Thank you, Timothy!
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Hi all. I'm newly diagnosed with MBC, and just took my first dose of Xeloda.
2000mg twice a day, traditional 14 days on & 7 off. Fortunately, I feel as if I'm as prepared as possible, thanks to all of your posts with experiences and advice. I've got Zofran, Immodium, special hand cream and socks (still need to find and order some gloves online, I have large hands with very long fingers, and women's gloves never fit). I'm still scared to death! My head is still reeling with this new development, it wasn't expected, was found by accident in an unrelated CT scan. I'm am so grateful I found this site, and all of you. Thank you, and hugs to all! ~Anne
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Mimi,
Welcome, but sorry you have to join us.
You do sound ready. Your symptoms may come on slowly. I started the first of February. Nothing really until just this morning when the bottom of my feet hurt. May have to choose my sloes carefully today.
It's all so scary at first. I will say Xeloda has made the most dramatic positive change in my tm and scans of any drugs I've had since 2013! A real difference.
Hang on to this board and this group of wise women.
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Thanks for the welcome Kaption.
And I do plan on hanging around, you all seem so nice; and the encouragement, advice and info shared is invaluable. That is awesome about your TM's, and great you haven't had SE's until now, hoping they don't get too bad! Crossing fingers for you.~Anne
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Today is my one year "Anniversary" of joining the Stage 4 group and also started cycle 17 of Xeloda (14 on 7 off)...one year ago today I never really thought I'd still be here !!! I am certainly thankful that I have, so far, had a very positive response to Xeloda. There was an article in today's newspaper..."Women with Metastatic Breast Cancer are living longer"...what a pleasant coincidence as I have been thinking so much all day about the past year. I will pass along info I learned this week during an appt with a pulmonologist as I am attempting to get re started on my CPAP machine...I have very mild sleep apnea but pretty much ignored using the machine since my original BC diagnosis. Studies have shown a definite link between untreated sleep apnea and cancer (of course) and diabetes...in fact they feel using the CPAP machine is as effective as oral hypoglycemics . My fasting blood sugar has been creeping up the past few years so it will be interesting to see what it is at when I have my next physical. Some of my blood work has been off ...ONC blames it on Xeloda but there is also a link to untreated sleep apnea. I hope this helps any of you that might have sleep apnea...I know I will definitely be using my CPAP !
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Stilts thank you! Thank you for bringing up this subject. I Too halve sleep apnea and somehow I'm not surprised there's a link to cancer. I saw my first pulmonologist in Orlando last year and before they saw me for my next appointment after the sleep study I moved to the Naples area. I now so a new pulmonolist and he lrequested my recordsfrom the old and I have an appointment on Tuesday and see what he says.
On the first visit he ordered steroids and an inhaler and thanks to that I breath much better and cough doesn't keep me up at night anymore.
I would appreciate any tips about using the machine you may have. I live with my daughter but she has a lot on her plate as it is and I hope I can manage by myself.
Thanks
Aurora
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Aurora...I will PM you
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