All about Xeloda
Comments
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I ate 2 pcs of toast. It’s about all I could muster up the appetite to eat. Had a little nausea a little while later. Compazine took care of it.
I’m worried about the HFS. When does it usually rear its ugly head?
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I've been on X for five months and have not suffered from foot and hand disease YET....only fatigue.
I thought that was a clear sign that it was not working, but at a recent pet scan there was less uptake and less lesions...so I'm staying on it hopefully for the next six months, since I would prefer to not be scanned so often...
Sheilamarie, I hope that you too can benefit without the typical SE..
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Hi, SheilaMarie
The earliest twinges of HFS started for me on the evening of day two of my first cycle-- my feet, especially the balls of them, felt burned and tender, and tiny paper-cut like fissures appeared. I tried all sorts of remedies (Working Hands, Udderly smooth, Bag Balm) the first month. My heels cracked a bit and the tips of my toes started to hurt. The HFS is really the only side effect I notice, along with mild ringing in my ears (my onc says that s/e is NOT common, but not unheard of...). Otherwise I have more energy than I did on Ibance/letrozole, which is a big plus in my book.
The second month I started using a Honey/beeswax lotion bar 2x/day (in the AM after I shower and in the evening before bed) and wow-- what a difference that has made in the quality of my skin. There are no more fissures, and although the balls of my feet and the tips of my toes still burn, my onc says my feet LOOK better than any of her other Xeloda patients... I have also apply cool gel packs to the soles of my feet for 20 minutes 1-2x/day and that really helps with the burning sensation, although it is still present and moderately bothersome. It's definitely worse on the the days after I am on my feet a lot (I teach 4-6 hours 1-3 days a week....).
Don't be afraid to dose reduce if you start to get significant side effects; it can go a long way towards helping you stay on the treatment. Also, are you on 7 days/off 7 days or on 14 days/off 7 days?
The 7/7 regimen has fewer and much less intense side effects, and has been found (trial at Memorial Sloan Kettering) to have equivalent efficacy. They found that peak effect occurred on day 8 and that there is no real benefit to the later days of the 14 day cycle-- just more misery!
I hope you find it tolerable and effective...
Elizabeth
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Thanks, Elizabeth! I’m on 14/7, but may tell MO I’d rather to 7/7. Where’s you find the honey/beeswax lotion bar? If there’s something good that works, I may as well start out on that!
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I just had a 3 week break as we went on a cruise on the Danube etc. My MO was completely in agreement as my H/F symptoms were bad, very red with patches of white with peeling. I have used several products including a good one made by Gherwhal in Germany. I got some this last week and I was there for half the price of Canada. My H/F problems are better but I still had pain when walking very far. I got home yesterday thought I had an appointment today with my oncologist but there was a misunderstanding and yesterday was the day. Now I am waiting for a call back to see what to do next. I also had nausea and fatigue and would like to stay off it but I don't know what else would be possible.
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What dosage seems to work best for people with the max punch and least SE??
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Hi
Im a week out no symptoms. Sometimes I wish I had some sign that its working.
I almost feel I need to be brought to breaking before mine is in remission. Just worried yuk.
Does anyone know how long it will take before it starts working. Im sure everyone is different just trying to get a average.
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Funthing-when did you get stage 4 dx? What treatments have you had since MBC dx?
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As if my nausea wasn’t already a problem when it comes to taking these pills- the SMELL!! Ugh! They smell sooo bad
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Hi, Sheila Marie---
I use the Bee Bar lotion bar from Honey House Naturals in Fife, WA-- I order it online...One bar lasts me about 6 weeks using it 2-x/day (rarely 3x/day). Towards the end the bar gets small and difficult to use-- a friend who is a soap maker suggested saving the bits until I got a bunch of them (I'm hoping that Xeloda wrks for a LONG time) and gently melting them in a small glass bowl in the microwave and letting them cool to make a larger bar out of the leftovers. I especially like the Hawaiian scented one...it's a mild but to me (and my daughter) a very pleasant scent. I have tried the vanilla and it's too strong for me. I also like the natural scent, which has a nice subtle honey/beeswax aroma.
Funthing42-- my onc says typically she sees results from Xeldoa 'early,' in terms of falling tumor markers, and sees stable disease or even improvement on the 3 or 4 month scan. Unfortunately my lobular disease (other than the extensive bone mets) doesn't show up on CT, MRI or PET scans, so we typically rely on CA27-29, alk phos, and CT counts. My alk phos is still normal, my CTC has remained stable at 2 since starting Xeloda in early September, but my CA 27-29 has slowly risen from 56 at the time I started Xeloda (and it had been mostly in the low 40's for the previous 2+ years) to 63 after the first month to 69 after the second month....we are going to give this at least another month or two and see if things stabilize. I am exquisitely aware that in reality there are a limited number of treatment options, and i don't want to burn through them unnecessarily quickly or without clear indication/high suspicion of disease progression.
There was a time about 8-9 months into my time on Ibrance/letrozole that my CA 27-29 jumped from the mid-high 40's to 64....we waited a few months and it slowly fell back to the 40's-- we couldn't ever figure out why--and then stayed there another 24 months. So in the absence of new/concerning symptoms or a multitude of labs getting wonky, I will be conservative in deciding when Xeloda isn't working.
I hope that everyone has a good response and minimal symptoms on this drug....and may you each find a moment of joy in your day.
Elizabeth
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Hi everyone
Shellie Marie I spent too much time on Aromasin.
Skin mets radiation Aromasin
I had node mets a few months after radiation Ibrance Fasolodex
Then liver mets xeloda.
Ev11 Thank you
Has any spoke to the oncologist about immunotherapy?
I get quickly shut down.
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funthing- I’m on immune therapy. It’s every three weeks. Takes about twenty minutes. We don’t know if it’s doing anything yet. Had three or four rounds.i was told it is slow to kick in
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Diana, please keep use updated here. Hoping this works for you. I still have to have scans, and move on from X, but I haven't met my deductible for the year, still $5000.00 plus needed. Total is $6000.00. So waiting until the first of next year, so I'm not out $10,000.00! It's not like the scans are going to cure me! But still undecided on my next treatment. May ask my onc, if it were his wife, which one would he want her to do. Good luck to you and all of us that find us here!
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Goldie-my Cancer center found me a 5000 deductible grant. They didn’t offer it I had to ask. There should be some one who does this sort of thing at yours. It really helped.
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too quiet. Hope everyone is o
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I think everyone is gearing towards TG, cooking, traveling, cleaning, etc. Wishing all my girls here a very Happy Thanksgiving. I'm sure most of you have seen this.....
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Happy Thanksgiving, Xeloda friends!
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Happy Thanksgiving everyone! I have been catching up on this post since May. I had to stop x and will be starting abraxane Monday. Got a port yesterday.
Goldie I wanted to reply to you comment about the deductible. Are you on XGEVA for bones? I have been for almost 7 years. The company has a $25 copay card. They pay all but $25 and that includes the deductible! I make sure it's my first appointment of the year and they pay my deductible. Which is $1000, plus coinsurance of 10 percent which is $800. After the first two shots I never get bills anymore because I think at that point I've met the max out of pocket. It's only for commercial ins though.
The posts about a cream with honey...it makes me think of just spreading honey on the feet and covering them up. It's used for wound care. I have used it as a face mask and my skin never felt nicer. I did not even need moisturizer after rinsing it off and I never go without it! It's a miracle product really.
Also for Goldie....i have been taking leutin for my dry eye problem. It took about 3 months but I think it really works. My eyes are still dry in the morning for about a minute but the rest of the day they are good. I have not used any drops or the coconut oil for months now. And also not nearly as sensitive to sun.
I have been off X for 4 weeks now and I still have the constant runny nose. Hand and feet very dry but after only one cycle I went to 5 pills and feet never got any worse. One day my mom and I did a lot of walking at an artsy festival and the feet were sore the next day with one quarter sized blister on the same spot each foot. The day after that they were fine again.
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Thinking of the honey made me also think of another natural wound care remedy.....maggotts!! At my job I read wound care reports which a lot are pressure ulcers and diabetic ulcers. Once in a great while, when things are not helping, they will order maggots and sometimes a medical manuka honey. Saw a YouTube about a lady who had a bad diabetic wound on her heel. She was going to need an amputation and she wanted to try the maggots. Every week she went back to have them removed and new fresh maggots applied! It worked and healed up. What's amazing is the maggots only eat the bad infected tissue and nothing more. If she would have had amp it would have to be below the knee.
Sorry for the gross story. Try not to think of it at turkey dinner lol! Just fascinated by it. Every creature has its purpose.
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That is fascinating, HLB. When you say leutin for dry eyes -- is there a spelling difference here -- is that lutein, the antioxidant found in yellow and green leafy vegetables? One more reason to eat those veggies! Is your onc ok with an anti-oxidant supplement? My eyes are terribly dry and irritated, and light-sensitive. They were so on Taxol and they are so on Xeloda. I now see an ophthalmololgist every three months to get punctal plugs to help keep the tears from running down my face. He said to use preservative-free lubricant drops liberally, and he also prescribed some steroid drops to use sparingly when the irritation gets too bad. He said fish oil capsules might help as well, so I try to eat salmon and sardines, and sometimes use the capsules (Nordic brand appears to be safe as far as heavy metal concerns). He said my lower eyelids are too loose, and that lack of collagen could have contributed to that. Yeah seven years of anti-estrogens and chemo, ya think I may lack collagen?
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Hi Shetland, yes lutein, I spelled it wrong. When I had adriamycin I had the tears running down the face. All the livelong day. I was told I could get stents put in because those ducts were narrowed. That was stage 2 and it cleared up as soon as I was done with chemo. It was unusual because that happens with taxol more often. In fact the nurse argues with me about it but put he on hold and came back and said the oncologist told her does in fact happen with the Adria sometimes.
What I had with Xeloda was the opposite problem, not enough tears and the eyes were dry and scratchy and even painful. I tried a lot of things but what I found worked best was coconut oil. Every night I washed my face and put the oil right in the eyes. If I did that I didn't need drops or anything the whole next day. Otherwise I was constantly putting drops in. I also started the lutein because I saw a commercial about it protecting from blue light. I didn't think it was helping but it's a small pill so I kept with it. Now my eyes are dry in the morning but that's it. If I forget the lutein I notice a difference so I will keep taking it. I had to wear very dark sunglasses and at night I wore the yellow ones because even tail light really bothered me
As for the oncologist, vitamin d is as alternative as he gets lol! Otherwise he just says it won't help but it won't hurt when it comes to supplements.
I think the dry eye can also become teary when it's irritating enough, so it might be hard to tell exactly which problem it is. I bought myself a 20x mirror and used wooden coffee stirrer to push on the eyelid. A whole row of tiny white dots showed up which was the solidified meibin clogging those glands. The meibin is supposed to be liquid and spread across the eyeball every time you blink. There's lots of videos on YouTube where they show it magnified and sometimes it looks like a tiny string of spaghetti shooting out like a play doh fun factory. Fun to watch lol. It's called meibomian glad dysfunction, or MGD if you feel like looking it up.
Yes all this time of no estrogen really sucks for the looks. They are now giving me the senior discount every Tues at the grocery store. I thought oh well maybe the age is 55 (which is my age) and I do bad without eye makeup. I asked what the age is last time and she said 65. I had to laugh. What else can you do!
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HLB,thank you for thinking of me. I have assistance for Xgeva and Xeloda, neither one cost me a penny. With my insurance, my office visits with my onc are only $40.00, so I am way off from reaching my $6000.00 detectable! I'm ok with waiting for my scans, it's only gonna show bad stuff, so need to rush it. Now if there were a chance they would cure me.......then I'd jump right on it!
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Goldie, I'm with you on the scans, I'm never in a rush. I think that may have been a mistake after this recent one though, because the trevious one was over a year ago and there's some stuff that's pretty scary and frankly effing with my head right now because no one can say for sure what's going on. After 6+ years of bone Mets and everything else saying "normal" , it now says "worsenIng cirrosis with small ascites". Well oncologist says he highly doubts cirrosis and although values are high he says it's due to bone Mets. Tbili is normal. I said well then liver Mets but he's like " ehhhh mumble mumble peritoneal I guess it's a possibility.....". No kidney failure, no chf, no important vein blockages. I would like to not worry but then why the ascites?? The PET and the US both describe them as "small" which I guess is a medical term because granted they are not massive but I've gone up a size and I can certainly see and feel them. Sorry for going on. I do feel better! I hope you had a wonderful thanksgiving.
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HLB, sometimes it's just good to vent and get it off your chest! I haven't had scans in 2 years!
Still doing TG, as I have 2 guests, they leave tomorrow. But I have done EVERYTHING myself, all of the prepping, all dishes, all cooking. No help what so ever from anyone.
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Oh my gosh I cannot imagine! I don't have any kids or any responsibilities, except the usual of making sure bills are paid and car is working. I am always wondering how do people do it that have kids and no help! I guess you do what you gotta do, that is my mom always said. Years ago when I had surgery she took care of the drains by emptying them and measuring the fluid. I said ugh that is so gross I don't know how you do it! She said hey, when it's your kids you do what you have to do! She is a strong person and her mother was exactly the same way.
I can't believe the guests didnt help at all. Pretty cheeky!
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Hi all its a little late
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HLB, it is not "my" family, it's my husbands daughter and her husband. She is very large and has horrible lymphedema in her legs, her husband waits on her hand and foot, even has to help her dress. But it doesn't stop her from playing for hours on our pin ball machine! Yesterday was the same thing, I had made a breakfast casserole, a 7 layer bean dip and then spaghetti for dinner. I had a sink with hot sudsy water in it, her husband goes over and just rinses their dishes and sets them on them on the other side of the sink. I'm like, there's hot soapy dish water there, why didn't you just wash the dang dish! What is it with these millennial's? They are 39.
Rant over....sorry! LOL
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Hahaha Goldie, there are so many people like that it drives me nuts! I think their parents just didn't teach them. We have a big gang that does it to my mom every year too. Some stay at mom's, some stay at my house. The ones who stay with me are up early to head to mom's because she makes a big breakfast. I get triggered just seeing the pic lol! My mom is making spaghetti today and I can't wait! I willl admit I don't cook but I do the cleanup. It works out bc my mom loves to sit at the table and chat for a long time after dinner. It's kind of relaxing to clean up at my own pace and listen to the convo.
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Hi xelota Group! I have been lurking for several months, trying to learn to navigate the site --happy to find this thread. I have done 2 cycles of xeloda and am experiencing terrible HFS- no peeling but a Little bleeding and terrible pain on hands, and when it gets bad I can't walk either. First day I have tried to use the keyboard in a week. Am on my "break" (I do two weeks on, one week off) and after 5 Days its only about halfway resolved. COmbined with 7 weeks of uncontrollable runs this makes for some no doubt comical moments as I race to the bathroom on my heels…. : )
Heard henna was good, didn't help me at all. Has anyone tried CBD oil ? (the legal kind with no THC)
How on Earth do you stand HFS? doing absolutely nothing with hands and feet is the only thing that helps, not too sustainable for a single working mother of two with no family. Seriously, how do you Cook/wash/work/pay bills...? On the other hand, over here in Sweden drug COSTs are never an issue, its all covered. Can't imagine trying to survive cancer treatment and worry about Health care COSTs at the same time.
(sorry for the unexplainable capital letters, seems to be a bug with this site, maybe only for international keyboards.?)
Big hugs to all from Sweden!!
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I have to admit, so far I am NOT a fan of Xeloda. I haven’t battled nausea/vomiting since I started chemo - until I started this one. I can barely eat, much less feel as if I can eat enough to take these huge stinking pills. Uh, the smell! It’s horrible! But the nausea and vomiting are the worst! Does this get better
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