All about Xeloda
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thank you Goldie...wise advice!
I’m however confused about X staying in the system...I was under the impression that it was active only for two hours after intake...I don’t remember where I read that....
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miaomix, I have not heard that. Not to say it's not true, just that I've never heard that. Interesting!
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Hi All,
I'm just finishing my 3rd cycle of Xeloda. I've been experiencing Hand and Foot Syndrome, mostly in my feet. I continue to use two products prescribed by an oncology dermatologist: Clobetasol Propolate Ointment (0.05%) for inflammation and 40% urea cream to reduce callouses. They both really help. I just wanted to add that I've found that elevating and icing my feet about 30-60 minutes after taking Xeloda also helps to reduce burning and redness. Thanks EV11 for suggesting icing. Thanks ShetlandPony for pointing out the O'Keefe's foot cream contains Urea and does NOT contain parabens. I also use many different moisturizers suggested by folks here. They all work to moisturize. I also have tried to reduce my dietary intake of folate (less lentils and avocados, although I still eat them). I'm very thankful that I'm not nauseous, but frustrated that I haven't found an exercise that is compatible with Hand and Foot Syndrome. I go to a cycle class every few days; it's easier on my feet than walking, but still exacerbates my feet problems. Ugh! I wish everyone much success on Xeloda! Theresa
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Miaowmix- Capacitabine reaches it peak plasma concentration in about two hours, and is 60% eliminated from your system in 12 hours (hence the 2x/day dosing.)
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Thank you Ev for this useful explanation...do you happen to know what happens to the remaining 40%? Do we get to eliminate the accumulated remains during the week off?
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Miawmix--the reminder is slowly metabolized over a day or two--I don't have the pharmacokinetics at hand, but I seem to recall that it is pretty much all gone (metabolized and/or excreted unused--such a waste!!) by 36-60 hours after your last dose...then we just wait for our tissues to heal from the insult of the medication! And then move on to the next cycle....
I also recall reading that it reaches it's peak activity (pretty much regardless of dose) between day 7 and day 8....that was the rationale for the Memorial Sloan Kettering trial of lower doses on a 7/7 schedule. That trial found similar PFS with the 7/7 vs 14/7 regimen and actually slightly better OS with the 7/7 group (small sample size, though....).
Glad to be able to share this extraneous information! Hope it's helpful somehow.
Elizabeth
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Hi Girls, I might be changed to Zeloda in the next couple of weeks. Does it work well for lung mets? And also, how soon can you tell if it's working? When will they do the first scans after treatment starts? I've wasted so much time on anti-estrogen meds that have not worked for me. Going to re biopsy next week. Thanks you
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Spooky some people take Xeloda for years! I was on it for one year but my tm dropped drastically the first two months so hopefully you can catch up! I found it a little harder than AIs but definitely not too bad, and after awhile most side effect went away.
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snoopy, my onc at sloan pulls a pet scan every 3 months, she adjusts dosage if needed
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Proud, scans every 3 months, wow. Not sure I could handle that. I haven't had a scan in 2 years. But now it's time, since my TM's have been on a steady incline. Having scans tomorrow. Been on X for over 4 years.
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good luck for your scans goldie.
Standard treatment here is scans only at milestones or if you have significant symptoms i.e unexplained and worrisome issues that last more than two weeks.
I will get scans in April or thereabouts for a second baseline at the end of treatment. At that time we will be looking for NED.
Btw Xeloda is now used for TNBC pre stage IV as additional therapy in high risk cases (or so my MO advises).0 -
Helen, that's exactly why I haven't had scans in 2 years. I feel just fine, no pains or concerns at all. I don't even feel like I have cancer, never have, even in the beginning back in 2008.
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actually feel better with frequent scans, my first onc put me on a pill only and after 3 months, scan showed progression, i was feeling fine
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I have scans every 4 months and just had mine yesterday. I have been on X for a year and praying to still be NED, after 17 years of chemo.
I am happy to just have CT scans now, instead of the PET scans.
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Theresa,
My wife Liz has just finished the 14 days of her first cycle. Her hands and feet have been pretty manageable but her feet seem to have a few more symptoms. She is also elevating and icing.
Liz loves the gym as well as works out at home. She has only been on the spin bike once over the 14 days and didn't have any issues. She has also been doing some swimming and pilates (reformer).
We are sheduled to see her onc on Tuesday for a follow up prior to her second cycle. She is also scheduled to start Zometa on Tuesday, which will be once every 3 weeks.
My thoughts and prayers are with all of you!
Grant
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Grant,
I'm glad that your wife's hand and foot syndrome is not preventing her from exercising! The dermatologist recommended swimming as a good option. I may have to change from my yoga/cycle studioto a gym with equipment and a pool. Thanks for the suggestion!
I have been on Xgeva shots every 12 weeks for bone mets for about a year. It's an alternative to Zometa infusions. I have not had any problem with side effects from Xgeva. Some people have reactions to Zometa, particularly on the first infusion. You may want to look on the bone mets thread (or ask your oncologist) for advice about taking an an antihistamine before infusion. I don't know whether Xgeva or Zometa is better for bone mets. If your are not on IV chemo, then my oncologist prefers Xgeva because you avoid the infusion.
Best wishes for your Tuesday oncology appt. I hope your wife has a long, successful run on Xeloda.
Theresa
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Theresa,
I wish you well for your fitness program! As I said, Liz loves the gym and athletics in general so it's been a difficult adjustment for her over the last decade as her knee cartilage has deteriorated due to her chemo treatments 12 years ago. Liz is strong though and finds new ways to keep exercising.
Thank you for the Xgeva information. We will definitely look into it on the bone mets thread and discuss with the oncologist. We're tip toeing a little bit with the oncologist as he is new to us as Liz decided to change hospitals for her treatment. We both have a very good feeling about him and want to start this relationship on a good footing.
I pray everyone on this thread has a successful run on Xeloda too!
Grant.0 -
Good morning, all. Ibrance/Faslodex stopped working for me in November (2018) after 23 cycles. I was off of treatment for a bit while I scheduled a second opinion at Sloan Kettering in NYC. Today I am completing my first cycle of Xeloda (1500 mg AM + PM, 7 days on and 7 days off). So far, my only side effects have been fatigue/a little wobbliness these last two days. No effects on hands or feet. I've been following this wonderfully helpful string and gathering notes and suggestions in anticipation of beginning the process, so I have cooling socks and all sorts of creams and unguents at the ready.
Denny, how wonderful that you've been NED and that you're 17 years out. My own MBC came back after 26 years of remission in Feb of 2017. What a shock. You're an inspiration!
Hugs and good luck to us all.
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The SE's are cumulative. I think the only thing I felt in the beginning was fatigue. I no longer have that, but hands and feet are not too good. Not sure about all the chemicals in a pool if that would be wise when things do escalate. Also, I notice if I'm on my feet a lot, they get really red and burn. I have lots of cracks and peeling on both my hands and feet. Skin is very thick, wrinkly...feels like alligator skin!
I had CT and Nuclear Bone scans the other day, results not in yet. TM's had not increased a whole lot, considering I didn't have any for 3 months, supposed to have every 6 weeks, I just needed a "break" from cancer.
Been on X for 4 years.
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Goldie, this hurts me just looking at your poor feet! I have it in my hands much worse than my feet. But I am losing the toenail on my right big toe now and the left big toe is partially lifted off the nail bed. No problems with my fingernails yet. I keep putting various creams on them, wearing rubber gloves to bed but nothing seems to really cure it permamently. I'm just thankful that my TMs are at 55 now!
Queen of the BandAids!
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Very hard to take pictures of the bottoms of your own feet! If I spend too much time on them they turn very purple and really hurt.
Wallaby, that is exactly what my hands look like. In fact I thought it WAS my hands! As for the lifting, I give myself my own injections of Xgeva, I save a needle and syringe and shoot Braggs Apple Cider Vinegar under the nail. As often as I can think of it. It takes time, but the nail attaches as it grows out. Depending on how far down it has lifted. It may take a month or 2, or 3. But it did work for me. It's my big toes and my pinky fingers that are my worse. My nails are super brittle and cuticle are dry and, not sure the proper way to explain, but they feel sharp.
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Goldie and Wallaby thank you for posting photos of your hands and feet....it's very helpful to see what are the accumulated side effects of X overtime. My hands and feet are starting to show those signs of cracking, peeling and overall dryness.
Do you happen to know what else it affects and dries out in our bodies apart from our hands and feet?
Have your digestive and eliminating systems been affected in any way?
Thank you so much for providing so much useful information.
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Miaomix, my eyes can be very dry, or watering! Lower lids are red, nose gets drippy. Eyes are SUPER sensitive to the sunlight. Digestive system was bad when I was on a higher dose but ok now.. Also, CBD oil helps and I have normal BM's when I take it. I had fatigue in the beginning, but not now. Hope this is helpful for you and any others.
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I have the exact same issues with my eyes and of course the fatigue....i've also been gaining some weight
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Goldie: I know exactly what you are talking about with the cuticles! Mine are like old, dried out, tough skin. I try not to goof with them very much as they don't hurt, they just feel strange.
I have the same runny nose and eyes. I had this with Ibrance also. Taking a Claritin does not help much and I have multiple boxes of Kleenex stashed about the house! The pockets of my jackets and vests are stuffed with them, as well as a travel pack in my purse! Not much you can do about it, unfortunately.
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Wallaby, lol on the tissues, same here! Did you get HFS with the Ibrance?
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Has anyone else had sinus pressure types issues from the Xeloda? There is constant congestion / pressure but no runny nose, etc. I have had almost constant issues with this since August, but I am also very prone to these issues and I'm still teaching full-time on campus at a college. So, just curious if it is just bad luck or a side effect.
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Hi all! I have nausea, constipation during week on and diarrhea during off week. Dry eyes. I control the nausea with Zofran, promethazine and CBD oil. I found a gel for dry eyes that works great. Also, I eat differently during my week on. Lots of homemade soups that I make and freeze during my off week. Scrambled eggs and Daves 21 bread toasted. If it wasn't for eggs, I think I would suffer from malnutrition.
I am sending a picture of something I bought online years ago, but haven't used. The second ingredient in both of the creams is urea. I will let you all know how much luck I have with this. It might not work well because of how old it is, so I think I'm also going to order another kit from foot smart, I'm hoping the foot balm will help with the burning pain from standing too long. My heels are just shy of cracking, and this kit comes with a with heel socks for after you put the cream on. Anyway, I will let you all know if it works or not.
Love and support,
Claudia
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