All about Xeloda
Comments
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Leftfootforward,
My wife stopped taking it for three and a half weeks at the end of June 2014, and just started another holiday from the drug two days ago, until her HFS clears up. Her last CAT 4 days ago showed the metastases (more than a dozen in the bones and one in one lung) are stable.
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Dear Holly,
I just finished my first cycle of X (2 wks on, 1 off, 2000 mg) with no nausea and no HFS. Sometimes I swallowed a spoonful of peanut butter and took the pill and that was ok. Maybe you will have a similar experience.
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WinningSoFar,
Great to hear your first cycle went so well, and thank you for the info on the food, very good to know since we always have peanut butter in the house. My dose is pretty high (3500 mg), but I'm hoping the 7 day on/7 day off schedule will make it bearable - if not, they will adjust the dose. I'm actually very relieved just to have taken the first dose, even though I know the SE's - if any - do not show up at first.
Wishing you continued success on Xeloda!
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Hi,
Hope everyone is enjoying the weekend. 1 1/2 days on Xeloda (3500 mg) and just threw up. What do you think, shall I skip tonight's dose or reduce it? I am scheduled for 3 pills tonight (took 4 in the morning). I have been exhausted as well. Maybe this is not the drug for me.
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Please hang in there. Most improve after their body adjusts. Call your oncologist for recommendations on keeping it down, and browse this thread to see what others have done in your situation.
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holly- what did you eat with your four pills? I agree that you should call your doc in the am, but be sure to have a good sized meal,with the next dose. Do you have any anti nausea meds? My onc prescribed them with the drug but I haven't needed them. Four pills is a lot though. I was reduced to 2500 mgs after the first round and I take the bigger dose(,3,pills) in the evening with dinner because it's a bigger meal. I think the nausea could come from not eating enough when you take the meds.
Good luck! I,bet they can take you down to 3000'with no problem.
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my nausea went away after the first two cycles so if you can stand it keep trying. Get the right drugs from your doctor for the nausea and I hope you will be good. Feel better
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gciriani, thank you for that advice, and hope your wife's HFS is improving with the break.
Sandilee, my onc called this morning and reduced me to 3000 mg, so I will start again at dinner time, and thank you for the advice - will try to eat more although no longer hungry.
leftfootforward, good to know your nausea went away after 2 cycles. I will keep trying.
Thank you all for your support!
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My SE's were not bad in the beginning, they are cumulative and have gotten worse in the last couple of months.
Holly, I usually have a bowl of cheerios, sometimes just a banana, or a piece of toast with butter, peanut butter and honey. I also take it with my coffee. Doesn't seem to hurt anything.I am not a morning eater either! Oh dear, you are throwing up. Maybe just do 3/3 pills. When 7 pills was too much for me, my onc put me on 4, and then increased from there. I am currently taking 5 a day now.
Wow LFF, 3 years and no break? I took one for 2 weeks, and gonna take another right now. My hands hurt so bad. I am also going to ask about 1 week on and 1 week off. Have never had any nausea.
I forget who said they were starting with 7 pills, which is where I started and my week off was just as bad as the second week on. That is when my dose was reduced.
Giovanni, so good to hear that your lovely wife is stable. May she stay that way for LONG time!
Sandi, I take my 3 pills in the evening too.
Starting my second week off today!
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Goldie, thank you for the advice on eating. Hoping the new 3/3 schedule will work, will start again tonight. Hope the break brings you some relief, and definitely ask about the 7/7 schedule.
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Unfortunately, my mom has to move on from Xeloda. Such a shame as she has no side effects on it.
Last scans showed stable, but her symptoms and blood say otherwise. That is the second bout of progression for her and second time that scans all showed stable (bone mets) until there was significant progression. Seems her symptoms give a clearer picture than CTs and MRIs.
She is moving to IV chemo - AC and taxol...I think? It's the same chemo she did after her original dx 14 years ago.
If anyone can tell me about their experience on it that would be great. Want to get all the info I can for her before her first infusion Friday.
Wishing you all continued sucess on Xeloda!
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GoldenGirls,
Sorry to hear your mom has to move on, are they sure there is progression, maybe she should get a 2nd opinion? My docs go by the scans, not the blood TM's which are unreliable for me. In fact, My TM's were going down on Ibrance, but the scans showed progression.
I think your mom will probably have the same symptoms she originally had on the taxol. I did the taxol- adriamycin/cytosin back in 2008 and tolerated it well, but I know everyone has a different experience. They lowered the dose after my first treatment since I was nauseous, but after that I has no nausea, just exhaustion, leg and foot cramping, and of course the hair loss wasn't fun.
I would make sure she has anti-nausea med lined up just in case, but they should be able to adjust the dose so that she doesn't have nausea and doesn't need the pills. Good Luck to your mom, hope that she tolerates the taxol well.
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Golden, I hope the chemo works for your mom. I think if they wanted me to do that round again, I would refuse. I tolerated it well, but losing hair and feeling nauseous all time, not sure if that is the QOL I want. My onc said at some point I would probably have to do chemo infusions, I told him NO. He asked why, for which I explained. He said it wouldn't be that kind of chemo. It would be weekly and it's more mild and no hair loss. So we will see!
Sometimes TM's tell and sometimes not, same with scans. What a roller coaster! Good luck to your mom.
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GoldenGirls,
Ask for a second opinion.
We always do ask for a second opinion when a change has to be decided. My wife's oncologist relied on tumor markers, but after she (the older oncologist) retired 8 months ago, the younger oncologist is telling us that tumor markers are not reliable, and that the new school is to rely on scans; he says that older oncologist relied on TM because that's what they learned in medical school when modern imaging technologies were not available. He stopped prescribing TM analysis as part of her blood work.
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hi! Ive been reading some replies, my mum was diagnosed with pleural mets one year ago, she was on femara for 5 months.. It stopped working so soon! Now she is taking xeloda and i wanted to know how long xeloda usually works..
My mum is in her 4th cycle.. She was taking 4000 mg/day 2 weeks on and 1 off. Now she takes 3250mg/day. Last tuesday onco said its shrinking and keeping stable so we hope it continues...
Good luck Goldengirls!
Sorry if its not well understable, we are spanish
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Hi everyone,
I may not have explained this properly. They don't go by her tumor markers as they've never been accurate for her. When my mom has experienced progression in the past it begins with an increase in pains that come and go. Her scans don't ever seem to show progression until it's significant. So far her pain patterns and her cbc counts have been better indicators of her bone mets progression than her scans. She begins to experience pains that come and go and eventually get worse and by the time her scans show a difference she is borderline anemic. This has been the pattern each time.
Her oncologist is head of oncology at her cancer center as well as head of the research team. He's been her onc for 14 years and is very thorough. Her last set of scans showed no change in the size/amount of bone mets, but no scans are completely accurate for detecting changes in bone mets. They always do a CT and MRI for her to compare. My mom seems to be aware of changes in her body before the scans show anything. He had suggested switching treatment a couple of months back when her pain continued to get worse, but warned that he doesn't want to jump the gun and burn through options prematurely, which is why she waited.
Just hope this chemo is easy on her. It wasn't too bad first time around. I wasnt able to attend her last appt, but I believe his plan is to get her stable and then spread out her infusions or lower her dose for maintenance. I'll ask more questions when we go in tomorrow.... I've always got questions
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GoldenGirls,
I'm sure your mom's oncologist is the best, however, I still would recommend a second opinion, and I'm sure he would agree with that. There are still so many things that doctors don't know about cancer, that two opinions are better than one. This seems to be the opinion of the former director of the National Cancer Institute, who wrote a book that just came out: The Death of Cancer: After Fifty Years on the Front Lines of Medicine, a Pioneering Oncologist Reveals Why the War on Cancer Is Winnable--and How We Can Get There. 2015. New York: Sarah Crichton Books.
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My wife had a second opinion yesterday on her HFS side effect from capecitabine (Xeloda). The oncologist, who is associated with Sloan-Kettering, said that with the severity of HFS she just experienced, even after taking a three-week vacation from the chemotherapy, she's bound to experience HFS again. She recommends to switch to a combined therapy of Ibrance and Femara. I see that a couple of you have already tried this road before coming to Xeloda. Would you mind giving me some details, if not here by personal message: your diagnosis in terms of ER/PR and HER2, dosage, side effects, how long it worked?
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gciriani,
Ibrance and Femara was an easy combo for me to tolerate - it is a targeted therapy and the only common side effect is low blood counts. If blood counts get too low, the onc just stops the drug till they come back to an acceptable level. At first they do blood tests frequently, but once they know how it affects her, they won't have to test so much. I was disappointed it didn't work of me as it has been working well for many others. I was on the maximum dose, but I did have to stop it for a few days on a couple of the cycles (I did 6 cycles). Possibly it failed me because I have been on several hormonals before this (including Femara alone, and Faslodex alone, and Tamoxifen for 5 years prior to that), and my onc says the hormonals are just no longer working for me. My TM's decreased on the Ibrance combo (confusing for them since the scans showed progression, but they rely on the scans) - so unfortunately I had to move on. The FDA approved Ibrance/femara as a first line treatment, but studies have shown success even for those who previously have taken hormonals. Good luck to your wife, I think she will find it very tolerable and hopefully it works great for her. You can find lots of helpful info on the Ibrance thread that Romansma started.
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After moving to a 7/7 schedule with the same daily dosage (3 pills morning and night), my HFS has gotten significantly better. I also use Giovanni's Uridine cream recipe. Still have the watery eyes and nose and the pigmentation spots. I was worried about progression on the lower dosage but had my scans last week and all looks good. Still nothing showing up in contrast but one tumor in my lung and the SUV is only 1.2 and it has shrunk a tiny bit. Hoping I can stay on this regimen for a long time!
Hugs, Susan
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Susan,
Great to hear you are having relief from the HFS on the 7/7 regimen, and that you had good scans and a shrinking tumor - great news, and hope you have continued success with this schedule!
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Thanks 3Holly! There is a lot of research on lower dosing of Xeloda but not much of it is definitive and we are all different. Sometimes it feels like throwing darts at a dart board. In my gut, I believe that bad HFS is a warning sign that the dosage is too high. I mean, if my hands and feet look that bad, what do my insides look like? At some point, the toxicity overwhelms the benefit.
Wishing you success with Xeloda. If you can tolerate it, having chemo in a pill form makes life so much easier.
Hugs, Susan
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The idea of 7/7 really seems worth a try. I plan to ask my onc about it next visit. Besides Susan, how many of you are doing the 7/7 dosage?
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I'm watching to see how the 7/7 Xeloda schedule works for some of you.
In August I asked Oncologist about going from my 14/7 schedule down to a 7/7 schedule and he wrinkled his nose. He suggested I remain on the 14/7 schedule and take an additional Off week when I feel I need to.
My hand/foot syndrome is bad enough that I find myself taking that extra Off week about every other month.
During my October oncologist visit he suggested to me I move to the 7/7 schedule! I never asked about it because we'd had this conversation during my previous appointment, he just brought it up!
It never occurred to me to ask what made him do such a turnaround in his thinking and I haven't yet tried the 7/7 schedule even though he said I could. And now I'm reading seemingly more and more Xeloda patients are moving to the 7/7 schedule and I'm daring myself to try it.
I'm just worried I'll lose my advantage with Xeloda if I cut my dose that much. I've been doing well on Xeloda for over two years. I am on the fence here.
One question. When you go down to the 7/7 schedule on Xeloda do you take more milligrams? Do you take more Xeloda per day while doing the 7/7 schedule?
I intend to ask Oncologist these questions but I'm not seeing him until next month. I'd like to hear from other Xeloda patients in the meantime.
Thanks!
Kessala
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Hi Kessala,
I am only on the 2nd day of my 2nd 7/7 cycle, so I will wait to give you results. I am on 3000 mg a day and so far have no HFS, but I don't know when the HFS is supposed to occur, and of course it will probably be a few months before I have scans to know whether it's even working. Anyway, I feel better than I did on the 3500 mg (got sick on that), but my bone (spine) mets are very painful now. I will report back after a few cycles. Hope everyone has a good and pain-free weekend!
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Holly, I'm so sorry you are having pain in your back. I remember how that felt -yikes. Radiation eliminated my pain, which seemed like a miracle at the time.
Great that you're not having any HFS! Envious. Maybe you won't, on that dose. Good luck!
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I just finished my second cycle of Xeloda (14/7 schedule, 2000 mg a day) and absolutely no side effects. I'm really amazed -- but still haven't had a scan so who knows how well it's working. Does anyone else take as little as 2000 mg/day?
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Hi Winning,
I'm taking 2,000 mg of Xeloda per day and have done so for two years.
My initial dose was 4,000 mg and by day 10 I was suffering with such bad foot pain I could barely walk! My dose was reduced to 3,000 mg per day and by day 11 I was back to the same level of pain as before.
Oncologist reduced me to taking 2,000 mg of Xeloda per day and I've been at that dose ever since. I always have hand/foot syndrome problems but this dose of Xeloda has eliminated my liver mets and kept them away.
Kessala
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I wanted to share my wife's experience on capecitabine (Xeloda), hoping it may help others. In a nutshell, HFS may ally itself with other ailments and magnify the problem, which no single specialist doctor we met is able to tackle on his/her own. If and when your symptoms of HFS start showing, work with more than one doctor, scrutinize their understanding of what is going on, and ask your health advocate to make sense of it.
Capecitabine is metabolized by the body to produce 5-fluorouracil (5-FU), which is cytotoxic (toxic to tissue); 5-FU accumulates in certain body parts (hands and feet) and its toxicity eventually shortens the lifespan of the tissue, causing it to die prematurely. This is what causes skin flakes, cracks and ulcers. Note that it takes several weeks before the accumulation creates noticeable problems. In our cases it has been in two separate occasions, about two months since the dose was started/increased.
My wife started taking 3000 mg* of capecitabine 7 days on 7 days off, in early March 2014. Three months later her HFS symptoms had increased to a level to make us worry (me, the oncologist, and above all my wife). The oncologist encouraged us to make an appointment with a dermatologist; however, at the dermatologist's office we saw only an APRN, who believed she was dealing with simple erythema and prescribed a steroid-based cream. Later on I was told by a European team of oncologist-pharmacologist, who developed an effective help (uridine cream), that steroid-based creams are counterproductive, because HFS is not the usual inflammation. Long story short, the cream increased the itching and didn't help at all. The oncologist decrease the dosage to 2000 mg; at the same time, because of delivery problems, my wife was forced to take a 3 week vacation from capecitabine.
During the vacation HFS cleared up completely; I also had done some internet research on the subject, found a pharmaceutical recipe for HFS undergoing clinical trials in Europe, and started compounding it at home. From July 2014 to July 2015, things were going well, and the symptoms of HFS were at a minimum. In the meantime my wife also shed 30 lbs with the guidance of a preventive-medicine doctor, who showed us the way to eat better to help fight cancer.
One detail that we were not taking into account is that my wife has had athlete's foot and toenail fungus since she was a teenager. In July 2015, when the 2000 mg dose of capecitabine stopped being effective, the oncologist increased her dose back to 3000 mg. Unfortunately the buildup of 5-FU restarted HFS to a level that became intolerable. She stopped again taking the chemo, but this time the cracks in the skin, the ulcers, the massive oedema etc. compromised the skin barrier to a point that the athlete's foot microbes and the fungus started taking over. Even three weeks after stopping the chemo, her feet still looked like a war zone.
Finally, four doctor appointments later, armed with my HFS research summary for the doctors at each appointment, the battle zone that was left for the athlete's foot to take over, is showing some sign of retreating. The lesson learned is that the microbes/fungi were predatory, took advantage of the decreased skin barrier and developed sort of a superinfection. Make sure your specialists understand a complicated situation, and don't just see your case from their usual perspective.
Below is the bibliography I gathered and studied while I was searching the subject.
Note*:
Capecitabine dosage supposedly goes with the surface of the skin, 1250 mg/m^2. To calculate the surface of the skin, one can use the formulas in this online calculator. The result should apply to 2 weeks on, 1 week off; for a 1 week on 1 week off I believe the correction factor is multiplying by 14/21 * 14/7 = 4/3. Plugging in the numbers for my wife in March 2014 (5'7", 165 lb result in 1.9 m^2) gives approximately 3,170 mg; in July 2015 (5'7", 130 lb result in 1.68 m^2) gives approximately 2,800 mg.- Karin Parraqmore, CH. Skin Care Products - How Much Gets In? http://www.earthmamaangelbaby.com/mama-resources/e....
- Ishizaka K, JP, Nomizu T, JP, Kitao A, JP. United States Patent: 8729056 - Preventive and/or therapeutic agent of hand-foot syndrome. May 2014. http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PT.../637760&RS=APN/637760. Accessed September 15, 2014.
- Ilyas S, Wasif K, Saif MW. Topical henna ameliorated capecitabine-induced hand-foot syndrome. Cutan Ocul Toxicol. 2014;33(3):253-255. doi:10.3109/15569527.2013.832280.
- Hand-Foot Syndrome in Cancer Patients: Concepts, Assessment and Management of Symptoms.; 2013. http://www.appliedcr.org.br/artigoPreloVisualizar.....
- Hartinger J, Veselý P, Matoušková E, Argalacsová S, Petruželka L, Netíková I. Local treatment of hand-foot syndrome with uridine/thymidine: in vitro appraisal on a human keratinocyte cell line HaCaT. ScientificWorldJournal. 2012;2012:421325. doi:10.1100/2012/421325.Full Text PDF. http://downloads.hindawi.com/journals/tswj/2012/42.... Accessed July 15, 2014.
- PubMed entry. http://www.ncbi.nlm.nih.gov/pubmed/22919318. Accessed August 4, 2014.
- Bartal A, Mátrai Z, Szucs A, Belinszkaja G, Langmár Z, Rosta A. [Novel oral anticancer drugs: a review of adverse drug reactions, interactions and patient adherence]. Orv Hetil. 2012;153(2):66-78. doi:10.1556/OH.2012.29272.
- Bartal A, Mátrai Z, Szûcs A, Liszkay G. [Main treatment and preventive measures for hand-foot syndrome, a dermatologic side effect of cancer therapy]. Magy Onkol. 2011;55(2):91-98. doi:MagyOnkol.2011.55.2.91.
- Nino M, Calabrò G, Santoianni P. Topical delivery of active principles: The field of dermatological research. Dermatology Online Journal. 2010;16(1). http://escholarship.org/uc/item/9sh763nc. Accessed August 29, 2014.
- Uridine Ointment Preparation. 2009. www.esop.li/downloads/library/UridinSalben.pps.
- Irena Netikova, Agnes Petska, Juergen Barth. Recent clinical studies with uridine cream. EJOP. 2009;3(2):22-23.
- Yucel I, Guzin G. Topical henna for capecitabine induced hand-foot syndrome. Invest New Drugs. 2008;26(2):189-192. doi:10.1007/s10637-007-9082-3.
- Juergen Barth. Letter to the editor - 5-FU induced palmar-plantar erythrodyesthesia – a hospital pharmacy developed "antidot." Journal of Oncology Pharmacy Practice. 2004;10(57). http://www.esop.li/downloads/library/Lettertotheed....
- Barth J. Uridin-Hand-Fuß-Salbe und Uridin-Haftpaste. Krankenhauspharmazie. 2000. http://www.esop.li/downloads/national/czechrep/576.... Accessed August 24, 2014.
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Thanks so much, gciriani! This is great information.
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