All about Xeloda
Comments
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Tumor flare is not uncommon with Xeloda. Hopefully your increasing tumor markers are just the precursor to them dropping significantly.
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Funthing-- My CA 27-29 rose a bit but steadily each month the first three months I was on Xeloda...then last month they finally dropped a bit. Hoping it was tumor flare...I'm glad I'm staying the course for a few more months to see if they stabilize or, better yet, continue to fall...
My onc says about half of her patients on Xeloda get an initial bump in their tumor markers-- tumor markers test for the presence of a particular protein on the surface of cancer cells, and it doesn't matter if they are dead or alive, if the protein is there the test can detect it....My onc says sometimes she doesn't even test them until month 4....Hope this is just your tumor flare as well, and that there are lots of dead cells in your bloodstream making your marker rise.
Try to remain calm and patient until another few months pass....
Elizabeth
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Hi Goldie,
What are you taking now that you are off of X? Whatever it is, I’m hoping it works for you.
Laurie
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Booboo, I'm still on X. Taking a break from labs and onc visits. Last time was in October, supposed to go to him and have labs every 6 weeks. It's a 2 hour round trip to do labs, 8 hour round trip to see onc. Have to have scans sometime in January. All 3 will not cure me, so not in a hurry. Besides, I feel great! No pain at all anywhere. Not sure what will be my next choice of treatment, probably Ibrance.
Thank you for the good thoughts, I too hope it works....and for a long time. I have had a good run on X.
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Anyone here dealing with a pain from Hand & Foot that feels like your hands and feet are on fire? I've had H & S for awhile but it has been manageable, with peeling and some redness of the palms of my hands and soles of my feet but without the burning pain. I am the Queen of Band-Aids on my fingers! Lately, I've had the extreme redness and burning pain in my palms and last night on the soles of my feet. Feet are better this morning but I'm wondering what you all do to combat that burning pain? I've been using Lansinoh, along with wearing Nitrile gloves on my hands at night, as well as putting it on my feet with socks at night also. That helps but I can't go around all day with the gloves on - I live alone and there is no one else to clean and do errands! I take Ibuprofen 800s for pain (mostly my spine) but it doesn't seem to do much for the hand and foot pain. Any suggestions?
Cindy
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Hi Cindy,
I am also experiencing burning from Hand & Foot syndrome in my feet mainly. I just started my third cycle of Xeloda on a 14 day on/7 day off schedule. I saw a cancer dermatologist who prescribed Clobetasol Propolate Ointment USP, 0.05% which works very well to decrease the burning and inflammation. She also prescribed a 40% Urea lotion which reduces the calluses. There are nonprescription 40% urea creams available on Amazon, but the one I ordered contained parabens so watch for that if you have ER+ breast cancer. I also use other thick hydrating lotions and occasionally ice my feet. I was dose-reduced from 3500mg/day to 300mg/day after the first cycle. For reference, I am 5'9" and 132 pounds. On a positive note, my oncologist said that Hand & Foot syndrome confirms that our bodies are effectively processing Xeloda. I hope that you will get some relief and that Xeloda will work for us all! Theresa
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O’Keeffe’s for Healthy Feet foot cream has urea, and no parabens. It comes in a blue jar.
If you just started Xeloda, the burning might abate after an adjustment period. When I first went on it my feet had that burning feeling, but after the first few cycles that didn’t happen much. Avoid hot, sweaty feet.
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well my secret weapon is a cleaning gal who,comes monthly but is also on call if i find myself in trouble
I believe in socks at night as well as cotton gloves, they help
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I use some blue menthol goo. Generic compared to mineral ice. I found if I was on my feet very long they would burn.
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Hi Theresa,
Thanks for your reply. I guess my body must be really processing Xeloda if you go by my hands! In fact, it did reduce my tumor markers by 140 points in about three cycles, down to 61. I've been on it since September 7, 2018. At first I didn't have much problem with the peeling part but it got worse about the end of October. Hadn't had much redness until the last two cycles. I see my MO tomorrow so I will ask her what the solution might be. I am on 1500mg 2x/day, 7 days on, 7 days off. Thanks for the tip about parabens...I had not known that previously. Yes, I hope Xeloda works for a long time for us all!
Cindy
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Thanks ShetlandPony,
I just ordered some O'Keefe's foot cream. I've been on Xeloda since September 7, 2018 so have quite a few cycles under my belt. My hands and feet have gotten worse in the last two months. I see my MO tomorrow so I'll see what she has to say. I'm on 1500mg 2x day, 7 days on, 7 days off. It's worked well for me so I just have to find a solution to the H&F issue.
Cindy
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Proudtospin,
A cleaning lady is my next project! I already have gardeners and a pool service. Also, a Roomba is on my list for the Labrador hair!
I do the socks thing during the day and at night, it's very dry in Las Vegas both summer and winter!
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My MO has given me permission to take an extra week off when my HFS gets bad(burning, stinging) and it really helps. I have been on 3000 mg daily for 10 months. 14 days on, 7 off.
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My onc said Xeloda side effects are cumulative, and she expected me to eventually need a dose reduction. After a year we lowered my dose from 2500 to 2000 (14/7) so it would be sustainable.
I third the cleaning lady. Even as I work on cutting expenses, I'm not planning on letting the cleaning lady go unless I absolutely have to. When I was diagnosed with the recurrence, I said, that's it, I'm getting a cleaner.
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wallaby, my cleaning gal is awesome, her first visit was when i had just lost my hair and the bath was a flaming mess
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MJHJAN & ShetlandPony: I saw my MO yesterday and she has given me an extra week off in between. She also reduced my dose from 1500 2x/day, 7 days on, 7 days off to 1000 2x/day, 7 on/7off. We'll see how that works.
When I was diagnosed with Stage IV in March, 2016, because I live alone and my son lives 1100 miles away, I decided to go stay with relatives in NC, one of which is an RN and very well connected in medicine in the Charlotte area. I have a pool so I needed someone to take care of it while I was gone, plus the yard. Got both of those services before I left in May, 2016. Not giving those up either! Will start searching for the cleaning lady shortly.
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proudtospin: I didn't have a cleaner when I did my first rodeo with this stuff back in 2006. Had a 2 BR 2 BA condo with no yard. Pretty easy. And after I was through with the A/C part of the treatment, it was a breeze through Paclitaxel and radiation. But, I was younger then too...LOL! My house now is twice as big with yard/pool. I hope to find one I trust and who does a good job. Fortunately, here in Las Vegas, we have a LOT to choose from...one on every corner kind of thing but you have to be careful just as anywhere else.
Cindy
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Hi Everyone,
Vanessa here, mbc with mets to lung and liver. I'm new to this thread as I'm starting Xeloda this week, this is my next drug after Ibrance/faslodex and Abraxane fail. So here's hoping Xeloda works for awhile. The onc explains things, but it's so good to hear from all of you in the trenches. Thanks for all your postings. I've already ordered the honey bar lotion and am trying to prepare myself for the next roller coaster ride.
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Cindy, i have had some bummers on the cleaning thing but feel good with current
Had some diareah issues yesterday and may call my gal to see if she can help me
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Iris: Glad you have found someone you trust that does a good job.
Interesting, I had the diarrhea issue last night and this morning! I'm on two weeks off Xeloda now, usually one week, and sometimes during my week off I get a stomach/intestinal upset. Never can figure out what causes it other than it might be my system getting rid of the Xeloda. Strange thing is, I don't usually have that upset while I'm taking Xeloda!
Always something new and confounding in the world of MBC!
Cindy
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Cindy, interesting that your tummy reactes that way. My tummy may be reacting to nausea med, not sure
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Hello to Everyone,
My name is Grant and I'm posting on behalf of my wife Liz. We're joined at the hip and I'm more of a forum person than she is.
Liz has had a recurrence in Oct 2018 after 12 years cancer free. It's stage IV with mets to liver, lung and bone. She had just started her first cycle of Xeloda today, 1800mg dose, 2x daily. 2 weeks on / 1 week off.
I'm working my way through 9000+ posts to get up to date.... I pray for Liz as well as all the others on this forum.
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lizo1/Grant, Welcome to Breastcancer.org,
We're so sorry to hear of the reasons that bring you here, but we're really glad you've found us. You're sure to find our Community a wonderful, welcoming, supportive and informative space to get all the answers you're seeking. We're all here for you both!
Please feel free to come back often, post regularly, ask lots of questions and get the support you both need.
We look forward to hearing more from you soon, and helping however we can.
--The Mods
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Grant, I too started reading from the beginning of this topic when I was prescribed Xeloda. The hand foot syndrome sounded horrible. But I came to the conclusion that back then (2011) some of those women were on crazy-high doses. It seems to me that the oncologists now have more data and more years of experience with Xeloda to tell them that it is safe and effective to use a dose and schedule that gives good quality of life. So I actually recommend not reading all the pages, or at least keep my comment in mind. Your wife should keep in touch with her oncologist about how the drug is treating her.
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Thanks Mods and ShetlandPony,
I've lurked on this forum for a few months and the quality of posts and character of people on this forum are outstanding and heartwarming. You are all incredibly strong and compassionate and we hope we can pay it forward by adding some quality comments.
I agree that there has been lots of data on Xeloda since 2011. I told Liz today that there seems to be lots of latitude for the MO's to adjust dose and schedule that maintain quality of life. Today Liz is only experiencing some tingling on fingertips and toes which she says is nothing. Liz has an appointment with her oncologist after her 3 week cycle.
Liz and Grant.
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Liz and Grant, SE's (side effects) can be cumulative, so keep that in mind. I've been on X for over 4 years, some SE's I had in the beginning, I don't have now and visa versa. Hands and feet are not to good, but I can deal with it. I take 2500 mg a day, I can't hardly tolerate any more than that. She might have cramping and diarrhea. There are lots of different dosing's on this drug, some do 1 week on, 1 week off. and then different mg's. And the onc might not see anything difference in the first 3 weeks. So gals report of TM's (Tumor Markers) going up, and then falling.
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Welcome Grant! Nice of you to help out your wife.
I started out at 2,000 a day for 14 on and 7 off. But with the SE's, I was lowered to 2,000 a day, 7 on and 7 off. I have been on X for a year and had the severe burning in the beginning.
Sometimes on my week off, I will have a day of sore feet, but not as bad. And those days I am also hit with very sore toes. I use Aquaphor 2-3 times a day. My hands aren't too bad, but still sore a lot.
I will have a CT scan in 2 weeks to see if I am still NED.
I am a 17 year survivor of Stage 4 MBC de novo, and have been on chemo the whole time.
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Hi Grant and Liz,
My experience sounds similar to your wife Liz, I was 12 years in remission on aromasin only and fairly recently have new mets to lung and liver, February 2017. I was on Ibrance/Faslodex and I started Xeloda on Tuesday 2000 mg a day 2 weeks on and 1 week off. It seems we just don't know when or which drug will give us remission or when it rears it's ugly head again.
Hang in there and welcome to the forum.
Vanessa
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HELP!
Question for the old timers....
Is it wise to take xeloda while I'm fighting a cold? I've been taking Tylenol for the past couple days which has been curbing the symptoms, mainly sore throat and congested nose and head...but I'm afraid that by taking the X I will be lowering my immune system further, which could complicate the resolution of those symptoms....
My glorious week off is ending tonight.
Thank you all for your help and valuable information with this TX which I really love
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X stays in your system, so being off for a week, I wouldn't think, would make a difference. If you are concerned, call your doctor. Of, if you feel you are starting to get better, take an extra day or 2 off. I have done that on occasion. Hope you feel better soon.
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