All about Xeloda
Comments
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Zills, have you tried Biotene mild mouth rinse for the dry mouth? I concur with Goldie's and NO1's recommendation of the BRAT diet to help with diarrhea. Possibly add yogurt for pro-biotics. I do BRAT for a day whenever things start heading that way. Trim that Christmas to-do list to the essentials, the things that truly make you and your kids happy.
Jeff, can you tell us more about the Xeloda plus Keytruda? What subtype of breast cancer? Why this particular combo?
Artist! Hi! So you are off IV chemo; that's good. Now l want to see your nerve/muscle issues improving as well as ascites staying away. I'd recommend not reading this thread from the very beginning because I think at that time (2011) the docs were giving very high doses and the patients had more hfs problems.
Stefanie, a friend (not a cancer patient) just told me that coconut oil was what finally helped with dry and breaking fingernails. I think I may try it for my peeling fingertips. Wow, more tiring than Ibrance? But you did have surgery recently, too, which has to be tiring. So maybe that will improve. QOL matters. Did you discuss dose reduction? Is there an alternative plan you could go with right now and keep Xeloda in your bag of tricks to use later if needed? I'm so sorry X is cutting into your enjoyable activities. Have you found any beach shoes that can keep the heat and sand out? Maybe scuba booties with a sole?
Pajim, so unfair to be sidelined. I suddenly pictured you going along with the tour group on one of those segways (like a scooter with a motor). Maybe you could rent one?
My onc says some people stay on X for years...
At the place where I do some volunteer teaching, they make the teachers get fingerprinted and background checked every two years. I know why they have to do it, but I hate the way it makes me feel, my privacy invaded and being treated like a criminal. So I am kind of looking forward to one day telling them I have no fingerprints, so leave me alone. Lol.
I would like to see Botswana particularly as I have been enjoying some books set there. (No. 1 Ladies Detective Agency)Scwilly, it sounds like you are learning to work with this treatment. May it work for you a very long time. Karina, I'm so glad you are starting to feel better. Sending hugs and good wishes to Anita, Sadiesservant, Bluebird, and anyone else in the anxiety of looking for an effective treatment. Hello, Nel, Deanna, Lindalou, HLB and anyone I missed.
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I also have ugly hair with this drug. I never blow dry and only wash 2 times a week with a cleansing conditioner, like a wen knockoff, and when the hair dries it's all fuzzy and puffy. I also get really tired but it usually hits me all of a sudden. I fall asleep at my desk and get keyboard imprints on my forehead. One foot has some peeling skin on it and they get really red but do not hurt yet. They had a sore spot on the first cycle but I reduced the dose and it seems better. I have a runny nose and constipation as side effects, and the dry eyes I constantly whine about. That is the worst one. Oh and my mouth doesn't get sores, but things taste hot and spicy when they're not. I crave pickles, both kinds. I hope you all are doing great!
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HLB, what cycle are you on? I just finished cycle 2 and have a lot of the same SE's that you do, although no pickles for me. I'm on a Ritz cracker run. Nabisco loves me. My hair looks like doll's hair and so thin after Ibrance.
Has anyone taken anything else beside Zofran for nausea? If I take it, it just makes my constipation worse. I drink Gingerale, chew on Ginger candy and eat small meals during the day. Trying to stay off anti nausea meds to help with the constipation and get my GI tract working again. Ideas?
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Linalou, I've found that taking my X with a small glass of kefir helps with both preventing nausea (it kind of coats the tummy) and constipation. Siggi's seems to work good for me and tastes pretty good -- not too sweet, even the fruit flavored versions.
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Lindalou, that is hysterical...a Ritz cracker run. I have been buying Ritz crackers from Costco, in the big box! I have found that Coke or Pepsi poured over a lot of ice to knock some of the bubbles out and some Ritz crackers help with the nausea. I too am just finishing up with my second cycle with Madame X.
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Hi Everyone,
I saw a few people asking about Coconut Oil. I've been using Skinny and Company Whipped Almond Body Butter (It's coconut oil and almond oil), and I have had minimal issues with HFS. The only issues I have had were a few blisters, but that was after clocking over 20K steps on vacation in New York. I might have got the blisters regardless.
The body butter seems to be working well. I sometimes will use O'Keeffes Healthy Feet as well and the combination seems to be keeping the HFS at bay. I use both on my hands and feet. I found the coconut oil at a little shop in cottage country, but I think Sephora sells it, and you can get it on line too. It's not cheap, but a little goes a long way.I'm on the last few days of my 5th cycle, and the stomach issues are becoming a bit more of a problem, but still manageable.
My last scan was mixed, so staying on X for another three months. Just in the last week or so, I've started to notice a significant change is size with my breast tumour, so hoping the same is happening with the lung nodules. Next scan end of January.
Anna
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Lindalou, I am on cycle 4 I think. I don't have nausea but I alway eat before taking ☓ which is a pain because my appetite is off a little. Sometimes I eat a pack of Belvita cookies or a pack of Lance toastchee. I also have constipation from just about every med I take, even the ones that are supposed to cause D. I had it under control with 500mg magnesium, but since starting X I have added florastor probiotics and acidophilus. It helps but the main reason I took it was an experiment to help my eyes.
I read one of you mention the coconut oil and I tried it last night. My fet se are minimal but this morning there was no more peeling at all. Also when I showered this morning I felt really slippery as if I was trying to wash off a heavy moisurizer. Especially "down there". Sorry for the TMI but that area has had zero activity for a long time and there is never any moisture of any kind. Very weird. I'm going to keep doing it and see what happens. My eyes even felt good this morning but it's too soon to attrubute it to that. I am very hopeful in that regard. I put a lot on, it was very messy. I used some that my mom gave me from the huge jar she gets at Costco. I've been using high urea cream because I heard it was the best for hfs, but maybe it's not. It's not getting rid of the callused spot that wants to stay hard no matter what.0 -
I ate a late mini-meal last night so I could take my final dose of the 2-week course, then forgot to take the pills. I just didn't want to eat again, so I said, "Whatever" and went to bed. That's the first time I have stepped outside the lines. Whatever.
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Shetland Pony. That is the hardest part-timing food with my busy life. I had a week of concerts last week and was working from 3-10. Ate a meal when I got home and then forgot. I just took the pills late and took a couple of crackers. It is so easy to forget when food is involved.
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Haha Shetland I do that all the time! Make it a point to eat even when I don't want to so I can take the pills, then totally forget the pills. And they're right in front of me on the coffee table. So far I have skipped day 14 twice.
Update on the cocnut oil for feet. I've been using it a few days now and the feet are loking great. Even theb small hardened area that got sore on the first cycle is a lot softer, almost back to normal. So far I thing it's working way better than the urea cream. I'm on day 8 of 14 so we will see what happens around the end of the cycle when it wants to usually flare up a bit.
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Karina, thank you so much. So far I am having all day low grade nausea and a terrible appetite.
Lindalou, Thanks for mentioning the Ritz! Guess what I am chomping on right now?
pajim, I remember reading on your thread about the feet and your walking tour! Sucks when we can't do the activities we want. So far it seems that I getting more C than D but will be vigilant. I would almost welcome some D right now. LOL! today I picked up some O'Keefe's and will try coconut oil as well. Also bought some new thick cotton socks although I despise wearing socks in bed. Think I will just sacrifice the flannel sheets.....
Scilly, thanks for the heads up about the Zoran and the big C. It doesn't seem to curb the nausea much for me anyway. I live in Nevada so will be experimenting with some CBD soon. I hope my stomach adjusts too. My hair is just now starting to grow out a little since Abraxane and is weird fluffy too. Great......it used to be my best appearance asset! Oh well, vanity be gone
Stephajoy, I am getting major fatigue too, almost as bad as Ibrance. Today I tried to go out and do a little shopping. Was in the store for about 45 minutes. At least 10 of those minutes I spent finding a bench or box to sit on. Pretty sure I may need a dose reduction.
Goldie, I got about 9 months on Ibrance, first with Letrozole for only 4, then Faslodex for 5.
Shetland, Neuropathy is VERY slowly getting better. But now that my appetite is way off I feel muscle weakness creeping back. I force myself to eat no matter what I have to do but some days are hard.......Ya, there was no way I was going all the way back so jumped in in Sept to read.
JFL, Hahahaha keyboard imprint.....cracked me up!
Yep, the eating issue with the pills is so difficult. I am on day 6 and already missed a dose because I went out after I ate. Instead of 3 in the morning and 3 at night I want to ask my Onc if 2,2 and 2 will work for him and see if my nausea abates.
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Well I went to the eye Dr for this dry eye issue and she told me to stop putting coconut oil in my eyes and use hot compresses and systane drops. I reluctantly stopped the oil and did as she said but my eyes were really hurting last night so I put a little in them. They are not good this morning. Maybe it will get worse before better but the cocnut oil was the only thing my eyes feel relief. Kind of a disappointing appointment. We will see in a month how things are. She didn't give me a reason for stopping the coconut oil other than its not made for the eyes. I'm going to need a better reason.
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My thumbprint doesn't work on my iPhone anymore. I tried to re-input it but no luck. The Xeloda has really chewed up the thumb, layers of peeling skin. A minor inconvenience, I guess.
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ShetlandPony,
Subtype is ER-PR+Her2- (20 percent PR presentation in biopsy). Mets to bone (spine, rib, pelvis, skull), lung, one liver lesion (all in under a year; fast grower?). Largest lesion is on liver but cant remember if it was 1.8 mm or cm (small regardless). Not sure about tumor PD-L1 expression, but as others have noted in separate threads, Keytruda can be efficacious even in the absence of tumor PD-L1 expression.
As for why this was the course of action? For one, and I think her MO and team share this opinion, treating via the immuno-onco route is likely her best bet for turning this into a true chronic condition, as the therapeutic effects can be long lasting if she's responsive (and she's eligible to keep receiving treatment even after the study ends if she responds). Second, due to her relatively low PR expression and absence of ER expression, hormone therapy (and combos with the same) didn't seem like the best second line option to keep things in check/move toward NED; she's considered hormone refractory for the purposes of the study. Third, the Keytruda SOC combo phase II data (albeit not with cape) has been very promising (and, if memory serves, so has the Keytruda monotherapy data). And lastly, her prior treatments (red devil to taxane to radiation to hormone therapy) have obviously influenced the chemotherapy choice.
She had her second infusion of Keytruda last week. First scans are in January. I'll obviously have more to share with the group at that point.
My thoughts and prayers are with all of you this holiday season.
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Just an found out Xeloda pills have lactose in them. This would explain some of my tummy trouble. I will now take a lactaid pill with my Xeloda. It might be something worth trying for others who are having tummy trouble
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My wife used urea based creams for moisturing, cera ve, salicilic acid, adapalene / differin. She also tried the cox2 inhibitor, celecoxib. All brought some relief, but nothing stopped the burning. Her feet still burn, and she's been off xeloda for 4 months now. Although, it is markedly better. All of the above have some history of working, but nothing reliably.
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Husband what is your wife on now? I hope she is doing well. This Xeloda is working fast for me like it did for her, but I'm concerned about permanent damage to eyes. My next step is to find an ophth that is familiar with more recent treatments rather than run of the mill temporary symptom relief that I have to do myself. I want normal eyes, not drops all day and compress which adds yet another cancer chore to my routine. I'm wondering what treatment will be next. Apparently it was this or IV, but two days after I started it Verzenio was approved.
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Shetland, I've messed with my dosages a whole bunch of times. Usually I miss day 14, or when you travel more than a 3 hour time change you inevitably miss a dose.
And today, for the first time, my iPhone doesn't recognize my thumb print either. I'm not peeling, but I have very dry thumbs.
I visit my grandchildren this weekend, can't wait! [they live across the country from us] The 'real life" stuff is the best.
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Enjoy your grandchildren, pajim! Do you still have a thumb print? Is the problem just dryness? Yeah, JFV. It is so annoying how so many pills have lactose. What a stupid thing for the pharmaceutical companies to do, especially with drugs that cause tummy troubles on their own. As for lactase pills, I don't really want to take another pill with all of its fillers, too. HLB, "cancer chore" is a good term. Whatever the side effect du jour is, it requires routines and products. Marylark, what kind of concerts? I find the nights I get home late a bit problematic because eating close to bedtime causes reflux for me, so I have to start the night sleeping on my back on a wedge. And can someone explain how I can make a meal with the intention of taking my pills afterward, then forget to take them even if I am thinking or talking about cancer?! Thank you for the info, Jeff. Hoping your wife's January scans are great!
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Hi all I'm so forgetful too - and seem to often miss taking my pills after Breakfast or dinner. So much so I have the excuse for an extra snack - and then the other day two - when I forgot after the first extra snack - I'm sure my DH dosn't beleive me !
I too have also lost the ability to use my fingerprints for my phone or laptop! It seems to be all that peeling. The latter is meant to open with my iWatch but good 'ol technology is unreliable. Makes me wonder what crimes I could get away with!
So this round I'm not too nauseous but my feet are really buzzing. Tomorrow - DH and I are going to the LA car show. As I really wont be able to walk around much - around the local shops are a bit too much at the moment - we are getting a wheelchair. Not sure what I feel but if we don't I wont be able to go and I really need to day out. Its gong to be very strange! Not going to trust myself with a motorized one - so its down to DH muscles (well it was his idea!). Hopefully going to see my favorite car, Aston Martin! DH will be all over the Teslas (we have a Model X) and their home solar stuff.
Have a fun and low side effect weekend.
Sarah x
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Shetland, I am a conductor and had a boatload of Christmas concerts. I'm also a classical singer. When I come home late I have specifically made a meal to take the pills and then have forgotten, only to eat again really late. Great for the waistline.
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This is for HLB: the FDA has approved Xiidra for dry eyes (not to sound like an ad; I deal with the same issues, though I am on this board for my sister, not myself). There's also this, from Healthline:
Drops without preservatives are recommended for people with moderate or severe dry eyes. They're sometimes packaged in single-use containers. As you might expect, they're also more expensive. Some examples of non-preservative drops include Refresh TheraTear, and Systan Ultra.
If your eye dryness is the result of diminished oil layer in your tears, your doctor may recommend drops that contain oil. Rosacea in the eyelids, for example, can reduce your eye's oil supply. Some effective eye drops with oil include Systane Balance, Sooth XP, and and Refresh Optice Advanced.
Your doctor is thinking you have this thing called blepharitis (which you probably do, but it's causing dry eyes that the treatment isn't getting)... it's like eyelid dandruff!! It actually sounds like you're on the right track with the coconut oil. My thoughts are with all of you. Dry eye is really hard and unfair on top of everything else.
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I set an I phone alarm for 8:30 every night. We usually eat dinner around 7-30, so if I've forgotten, the alarm goes off and my tummy still has enough food in it that I can still take it. Occasionallyiill shut off the alarm because I'm in the middle of something, then promptly forget. All of the sudden its 11 pm and I'm like ......shit.
Stef
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HLB, my wife switched to palbo and letrozole after over a year of success on xeloda. It was working well when she switched, and it appears the ibrance / palbo is also working for her. She wanted something with less side effects, and the opportunity to switch was only open for a short while, during which time pfizer was still taking Canadian women on a compassionate basis. Her first month on palbo was just wonderful. She felt so much more energy and even went for a few runs. Eventually the palbo began to wear her down, and now she is on a lower dose, and is feeling not too bad. She still has trouble sleeping. A good chunk of the time she attributes it to burning legs and feet. More of a neuropathy, than a hand foot syndrome.
If the palbo doesn't continue to work, she can switch back to xeloda, as it was working at the time she quit it.
When she first started xeloda, she got the hand foot syndrome quite bad. Her skin on her feet cracked and peeled. Eventually she lost all callus from her feet, and it was more of a burning problem, than cracking. Nothing she tried really worked well on the burning sensation. And as I wrote above, it still haunts her at time.
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Thanks Husband11. This is interesting. I always wondered if cycling on and off Xeloda was feasible - use it to battle progression and then switch to targeted therapy. Makes sense to me to keep this in the toolbox if effect, rather than develop resistance.
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Scilly, I had to have a wheelchair when we flew to LAX because the place is a mini city and we had to make a quick and long way away connection. It was difficult for me as I felt like my grandma at 89. 6 months ago I was bike riding, kayaking and could still ski last December. It's hard.....
HLB, if Dr. did not have a good reason to discontinue coconut oil I would go with what works. Just make sure it is organic with no weird preservatives or additives.
Have a great time with the grandkids pajim!
Thank JFV, I will try a Lactaid too.
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Sarah, there's nothing for it but to tell your husband you need an iPhone X with face recognition!
Lol, I have to smile knowing I am in good company with the whole pills with a meal vs. chemo brain forgetfulness thing going on! (As my grandma said, ya gotta laugh so ya don't cry.)
Marylark, conductor, that's awesome! The arts feed our souls.
Artist, it is shockingly unfair that you currently can't do your sports. I am glad that you were at the airport, going somewhere you wanted to go (that was for the wedding, right?). So take that, stupid cancer!
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Now that's a great idea Shetland! lol
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JFV, I just want to thank you for the info' about Xeloda containing lactose! That had never occurred to me, and not only do I take Xeloda, but I frequently take it with a small glass of kefir because I often forget to take it right after a meal. So I bought a lactaid supplement yesterday at a natural foods market -- took it yesterday -- and cannot believe the difference! I know one day isn't a lot to judge a product or change on, but I just don't have the bloated feeling I've lived with constantly since Ibrance and now with Xeloda. The last few days of my cycle have always been the worst -- that 5 mos. pregnant look and feel -- so it will be interesting to see if the supplement makes a noticeable difference on those days. But thank you so much for the tip, which I've also shared on the Xeloda FB page!!!!!!
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DLB, glad to be of help.
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