All about Xeloda
Comments
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RR thanks. So happy you got the Ins part straightened out, best of luck for you.
Rosestoases sorry to hear that, now what?
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Thanks for asking, Momallthetime, I meant to update yesterday but got distracted! I'm actually still on Xeloda for the time being. My CT scans looked good, the tumors in my liver are 30% smaller, and my onc wants to give it a little more time to see how Xeloda does. I hadn't had a bone scan since the tumors showed up in my liver, which was several treatments before Xeloda, so hard to say whether the spots are truly new or not, but with the CT showing improvement, we're going to keep on and keep an eye on things.
So, I'm still here on this thread and on Xeloda, at least till we see how this goes!
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Sounds good. Xeloda could also be mixed with other stuff.
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Hi everyone, I got my Xeloda delivered this morning and I just finished talking to the specialty pharmacy. I'm supposed to take 1-150mg and 4-500 mg 30 min. after breakfast and same after dinner.
Another 10 pills a day! I already take 10 so that's 20! 
and he said to start using the udderly smooth cream now BEFORE the symptoms appear! I'm sorry for all the exclamation points but after being in such an easy treatment as Ibrance+faslodex I'm in shock! Please I can use words of encouragement and support.aurora
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Auroya I just addressed you at the Bone mets thread, so happy you got it in your hands. The cream is a great idea, and also recommended was Probiotics, to help avoid the gastro issues, which might come either way, but at least this might help. For a lot of people it's been a doable treatment. Take care.
My daughter's dose is 1000mg x a day. She is petite, I am wondering if that's the case why she is not getting the recommended dosage I read was 2500mg? Or maybe I am wrong.
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There is a great deal of controversy over the most beneficial dosage of xeloda. It looks like Onc's usually start high and dial it back as side effects develop. I read that at USC Hospital they thow the whole calculation of dosage based on height and weight (to give body area) out the window and simply give everyone 1000mg 2x daily. They claim they get results as good as anyone, and much higher compliance owing to lower rate of side effects. Who knows whats the best way to use this drug.
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Thank you Timothy for the info. I was thinking also something regarding type of body, but they are always so concerned with her QOL and she wants to do the most every time, then there is the World the real World.
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Auroaya...I am currently on cycle 7 of Xeloda and have found it fairly easy to tolerate. Good idea to start pampering your feet right away, take a daily probiotic and
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Auroaya...I am currently on cycle 7 of Xeloda and have found it fairly easy to tolerate. Good idea to start pampering your feet right away, take a daily probiotic and keep some Imodium on hand in case you need it ! Hope it's as easy on you as it has been for me...the best part is my TMs have decreased significantly and my last PET CT showed improvement. Keep us posted
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My wife is doing well with the Xeloda. Her hand foot syndrome has certainly put a damper on her previously active lifestyle, and her cycles are often delayed by low platelet counts and neutrophil count. She doesn't experience any GI tract problems. She just finished up another two week on, one week off cycle. Her blood counts are good enough for her to restart, but the Onc suggests she wait 2 weeks rather than just the one as he feels the majority of her cancer has been beaten down by the xeloda and that having an extra break between cycles won't affect her treatment at this stage. He suggested she could switch to an aromatase inhibitor at this time, but as we are still seeing consistently decreasing tumor markers, she wants to continue, and he agrees that is a sensible choice. Percentage wise (taken as a percent of her previous value), her tumor markers have fallen pretty consistently, but as the numbers get lower, so does the numerical drop each cycle.
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Timothy: Glad your wife is doing well on X. I'm on my 8th cycle (3000 mg/day). My blood counts have also consistently gone down cycle after cycle. I feel cold a lot of the time, so I just wear socks and a sweater (the socks help my feet, too). I have my next scan in a couple of weeks. I'm hoping for stability more than anything. I have tumors in many bone groups and organs. How is your wife's fatigue? My H/F syndrome can be bothersome; I can't make a fist or open jars anymore, and my husband does the dishes
) to spare my hands. I don't eat ANY raw vegetables because they inflame my digestive tract, but I can eat them if they are well cooked. Keep us posted. Take care,
Lita
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She is definitely suffering from fatigue, and generally poor and disturbed sleep. She does her best to stay active, exercises a bit at home, and we go for an hour long bike ride when the weather is good. She isn't really up to a lot of walking (let alone running, which she was an avid runner) with her sore feet. She eats a lot of vegetables and fruit, blended into smoothies. Cups and cups of spinach daily. Can't even taste it in a smoothie.
My wife is taking 1150 - 1300 mg, 2x daily. Generally in the pattern of two weeks on and one to three weeks off. Never seems to get relief from the hand foot syndrome, although its not burning like it used to, and most of the callus is long gone from her feet. It initially cracked and peeled. She's tried a lot of different foot creams.
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Timothy: O'Keeffe's Working Hands is a good cream to use for both hands and feet. You can get it a Lowe's or Home Depot, but I actually found some on sale at our grocery store for $5.99. It looks like a green hockey puck. Don't know if you can order it up in Canada, but you can probably get it online. I alternate creams, using Working Hands, Eucerin hand cream (it's in a jar), Aquaphor, and Gold Bond hand cream in a tube. Aquaphor is really sticky, so put socks on for sure. I always slather the creams on especially at night and put a pair of gloves on. Be sure to get the cuticles of the finger nails, too. You have to put the creams on at least twice a day for your feet, and several times a day for the hands. I've been experimenting with wearing gloves during the day when I go out, too, and it's been helping to keep the itching and peeling at bay. I find that the peeling gets better on my "off cycle" weeks, but the tingling, burning, and throbbing are still there (that's because Xeloda affects the nerve endings, too, and that doesn't go away quickly). Nevertheless, I'd rather deal with H/F syndrome than barfing and feeling nauseated all the time.
Quite a few of the chemos affect sleep, and Xeloda does that for some people. Heck, I'm lucky if I can get 3-4 hours of sleep a night, even tho my eyelids are totally heavy and I really want to sleep. It certainly doesn't help with fatigue! If it becomes problematic, talk to her dr about getting something to help w/sleep. I use medical cannabis when it gets really bad, and I can maybe sleep up to 6 hours, sometimes even 7, but that's rare. I don't stress too much over not sleeping because I had to retire from work b/c of this miserable disease, so I can nap during the day if I have to. With my hands and back hurting so much, there's no way I could work anymore. I did try to work for the first month after Dx, but the pain was getting worse, and it wasn't fair to me or my coworkers...my job demanded too much - it was a 50+ hour a week job.
Smoothies are great...incidentally, beets help with the liver and blood counts. You can blend a steamed or roasted yellow or golden beet into a smoothie and it doesn't taste too bad as long as you have other things blended in with it. I find red beets a little too strong in terms of "beety" flavor.
Hope this helps,
Lita
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We love beets. Didn't get quite the crop we were hoping for this summer as a wild rabbit came along and took the tops off a lot of the young sprouts. Last time I thin the beets that early.
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Just thought I'd throw this out there.....is anyone experiencing nagging, dry, itchy eyes on their chemo? I looked in the side effects info, and dry, itchy eyes are one of the more RARE side effects. My eyes have been really bad for the last few days. My eye dr gave me some gel drops the last time I saw him. They are more viscous and make everything look blurry for several minutes. I have to use them more than a couple times a day.
Another irritating SE to deal with,
Lita
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Lita, I have had terrible eye side effects. Dry, itchy, red, swollen, blurry, sensitive to light. I use over the counter allergy/redness drops as well as moisturizing drops, but I am going to ask my doctor for something stronger. I surprised it is only considered a "rare" side effect. I thought it was pretty common!
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JFL: This eye crap really sucks. I've noticed that I'm now more sensitive to light...have to put on the sunglasses as soon as I go out because the bright autumn light (when the sun is at a certain angle) really hurts. My eyes get more blurry now, too. I can only read for so long before everything gets blurry, and it takes a while for the eyes to get back to somewhat normal. Eye dr said this is to be expected. He said to be sure to drink plenty of fluids, too. I'm using Blink drops, which he recommended.
And on top of everything else, I'm also getting a stye in my right eye. Boo!
Lita
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My wife gets dry eyes, especially during the time she is off xeloda. She also has increased sensitivity to light, and wears sunglasses outdoors, even when it isn't sunny. She uses frequent eye drops.
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My eyes were the same, itchy, burning and watery. I've been off X for about 3 months and they are no better. I have to wear sun glasses even if it's cloudy out.
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Hi everyone,
Any Xeloda success stories out there? My mom has had two treatments fail her this past year (A&A combo, Ibrance and Faslodex). She has bone and liver mets. Liver disgnosed last year, bone de novo end of 2012. Really feeling anxious that the last two treatments have failed. She just finished her first cycle of X and really praying it works.
Can you share how long you have been on it? Where your mets are? Previour treatment fails? This is her first real chemo and she is not looking forward to IV (everyone says it's hoorible).
THnaks,
Christine
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guiding light-
I have been on Xeloda for almost 4 years. It get rid of a liver full of tumors and has kept my brain mets at bay.
My Xeloda is oral pills. Is your mom I am IV form? I have found the oral form of Xeloda to be very tolerable compared to my initial chemo treatment.
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Yes, mom is on the pill form. She had some issues with nausea and found it hard to take 4 pill sin am and 4 at night. She doesn't have a big appetite, so hard to take so many pills and eat a good meal too. BUT, she is on her week off now and I must say her food intake has increased. She gets up in the night and gets food. So definitely happy about that.
Did you received prior treatment for MBC? Or is Xeloda your first?
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Hi ladies;
Does any of the Xeloda ladies experience some discomfort during the week off? I feel so much better when I'm taking Xeloda.
During the week off I have headaches, I feel something in my neck. TM continue to decrease. This time went from the 800 to 400. Last scan showed that I was stable, but I can't stop thinking that I may be having progression.
Zi
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My wife does have worse side effects and poorer sleep during the time she is off (1-3 weeks, depending on blood counts).
She went back on yesterday, and last night had her best sleep in a week. Odd.
Her cancer is in her liver, multiple small tumors and also an area of diffusion. The xeloda she started in May is her first chemo treatment for stage IV and it is working.
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First of all, thanks to everyone who is on this thread. We need each other to get thru this misery.
Guidinglight: I really can't say anything about "success" yet. I will know more by Friday, Nov 11. I have a CT scan on 11/9, and MO will go over the results on Friday. I've been on Xeloda for almost 6 months. I did have progression in the lower lumbar region and pancreas after 3 mos, but RO (who went over scans side by side from July) said that was to be expected because I had my first scan in April, and didn't start X until the end of May. The cancer had time to grow during the 5 wks from Dx to starting X. Sooooo, next Fri will be "the moment of truth." The SEs are pretty much manageable, but the week when I get my Zometa bone infusion is a little rougher. Thank God I only have to get those every 3 mos. I have more nausea, diarrhea, and bone discomfort during those weeks, also to be expected.
Timothy: I feel crappier during my off week, too, and my hand/foot is worse. MO said it's because the X is "cumulative." The toxicity is building up during those 14 days on (or 7 days on, if you're one week on/one week off). It generally takes about FIVE days during my off week for me to even start feeling semi-okay. Then two days later, it's back on cycle. X doesn't just clear out of the body in a couple of days. That's why you have a full week off to let the body try and recover as much as it can. That's just how it is, and we have to adjust our lives and plans accordingly. I have a big all-day cancer conference that I'm attending this Fri, 11/4, and that will be day 12 of my cycle. I'm planning to wear Depends (just in case) and bring some anti-nausea stuff with me for the day because I just had a Zometa infusion on Monday this week. Wished I could've pushed the infusion til the following week, but MO said she didn't want me on either drug during my scan next week. So that's the way it goes. I told DH I'll just gulp a couple of swigs of Imodium, wear my Depends and hope for the best
.Prayers of strength, and easing up of side effects to all of you,
Lita
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Yep, this week was probably the worst as far as diarrhea goes. Had to take lots of imodium. I'm going to see if I can switch to 1 week on and 1 week off. Couldn't leave the house this afternoon.
Lita
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Hey, all fellow X'ers! I had a PET/CT this weekend and the results came back today. The report described my mets as "negative" for any hypermetabolic activity! The scan didn't mention whether my lesions in liver and bones have decreased but my DH reviewed the scan itself and showed me a comparison to my last PET and the liver mets have definitely shrunken and some have gone away.
I was nervous about this scan because my liver hasn't stopped hurting since I started Xeloda 8 months ago. The first few months, I figured it was pain from dying mets but was worried now that it has lasted so long. As it turns out, it continues to be dying mets pain! My bones have also hurt more the last few months since I stopped Cymbalta. Although I knew Cymbalta was helping with my bone pain, I was worried it might be progression as well. When I started Cymbalta, my bone pain and mets were pretty extreme so I didn't have a good basis of comparison.
Anyway, just wanted to share the good news! 8 months ago, nearly my entire left lobe consisted of metastatic tissue and the right lobe had inumerable mets, some very large in size. I am impressed by how well X has worked so far!
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Great news, JFL!!! I get my scan on Wed. Hope my results are as good as yours
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Congrats JFL, that is great to hear.
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jfl. Great news !
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