All about Xeloda
Comments
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Wow, this thread has been busy. Hummingbird, so sorry for the problems. Praying for no blockage. I think maybe a reduction in dosage may help. I had the very opposite with bowels, not sure which of the evils is worse. But oh how I remember those waves of pain.
Kiss, if the markers are up, but scans don't show anything, maybe staying on Madame X will still be an option. And thank God we have lots of options and different drugs to try. Wishing you all the best.
I see my onc on Thursday, I am back on my 2 weeks on, but backed my dose down to pills. Wow, my hands look and feel really good today, but I know this won't last long!
Hoping to hang with Madame X for quite some time longer, but would much rather hang with NED!
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Hummingbird, Oh my goodness.... I can not imagine. Hope things "move along" quickly so you can get back to living pain free.
Kiss, I am so sorry. Always so very disappointing when a protocol fails us. Best to you on whatever your next regimen might be.
Babs, I guess I had read that you moved into the city some time back. My memory isn't what it once was, and I had forgotten. My whole life has been about minimizing commute time. Such a waste. Since I work for myself, my commute is now about 30 steps, across the landing. Very convenient, though i have to work hard to stay focused when the house if full of people.
*susan*
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hi everyone, I have not posted in a while. Well, it seems my run will xeloda is officially over for now. I was on it for 5 months (7.5 cycles)along with a clinical drug. No great results so moving on.
Now that I have stopped, as of Sunday, does anyone know when the skin starts reversing and healing? My fingertips are sore and my feet are super dry and cracked. I do have the dark palms as some of you have mentioned. I posted a pic of my hands earlier on in this thread. I'm using coconut oil which helps the hands,but not making strides of improvement on my poor wretched feet. I'mAssuming it will take months to heal. What do you think?
Also, been reading all the posts and wondering how hummingbird is doing.
Xo letranger
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Letranger,
It took my wife six weeks to clear up all HFS symptoms, two visits with a dermatologist, and one visit with the GP. Her symptoms were pretty bad though, and were compounded by athlete's foot. Be very inquisitive about prescriptions, because for instance a $100 prescription by the GP turned out to be doing nothing and discontinued by the dermatologist after two days. Good luck!
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Oh, Hummingbird, I feel for you. This drug gives me the same problem,but just not as bad as in your case.I hope a reduction in dosage does the trick.
Kiss - markers aren't always indicators. Since you had a liver scan, chances are things are ok for now.
Letranger- I'm so sorry to hear you have to move on from this drug. Just had a CT this morning, and I know how I'll feel if I get that news. While I don't like the HFS and other issues, it no doubt beats many of the other chemos. I hope you find something that works asap!!
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thanks Giovanni - ah, looking forward to a pedicure in 6 weeks!!!!
@ sandllee! We were hoping xeloda would cross the bbb but not sure it is is working fast enough. So a little different scenario that most ladies on this thread. But I've heard it has been successful systemically!
Wishing all of you the best outcomes! Xo
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Sandilee
I home you get great results from your CT. Fingers crossed!
Babs
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Ladies, thank you all so much for your concern. I had such a rough time until a couple of hours ago when I finally began to "clean out". All I want now is to get some good sleep tonight! I'm so tired. I will see how things go tonight and then decide whether or not to restart X tomorrow.
Letranger, sorry to hear your news. Hoping you have a very long success with your next treatment, with no or very minimal se's.
Sandilee, hoping to hear of great results from your scan. Good luck!
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Letranger,
Yes, you were the one who posted the picture of your hands! Thank goodness I saw that, otherwise I really wasn't expecting darkening of the skin. What kind of coconut oil are you using on your hands and do you also use essential oils? I am sorry you have to switch treatments already. I hope you have a great pedicure soon enough! I hope your next treatment works effectively for a long time!
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Dear Groovy, I use coconut oil that someone made for me out of fresh coconuts! But I also use organic coconut oil, yes the one you cook with. Sometimes my husband tells me I smell like food. LOL. But I love the smell, I pretend I'm on an island. (Chuckles). Anyways, I'm sure if I used it religiously on my feet, they would fare better. I also use Doterra essential oils. I prefer to use therapeutic grade, high grade oils. I initially started using them to breathe in to relax and calm/stimulate my brain but I was rubbing them on my hands to breathe them in and found a change in my palms! No more cracking. Although they are dry. I don't use any lotions or creams. Just coconut oil and you can add essential oils to a carrier like fractionated coconut oil or jojoba.
All my best to you! xo letranger
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Letranger, wishing you great success with the next treatment! Thank you for sharing here on this thread, so great to have your experience.
Hummingbird, so glad you're feeling better, what an ordeal! Enjoy the well deserved rest and wishing you an easier time when you restart X.
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Letranger, I'm sorry you didn't have a longer run with Madame X. It's just so weird how some things work for some and not for others. Whatever you move on to next, I wish you all the best. I did the 7 days on, 7 days off for 3 cycles, and my hands are sooooo much better! However I have went back on to 2 weeks on and 1 week off. So I'm sure they will get bad again.
Sandi, good luck on those scans.
Hummingbird, congrats on making that "move"! I think a lower dose is in order.
Seeing my onc tomorrow, but since I already know there is slight progression showing on my scans and tumor markers rose, it will just be a discussion on treatment. I'm not ready to give up on Madame X just yet. I'm hoping it was the 7/7 schedule.
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Susan, Yup 2 pills at once, definitely the highlight of my New Year. Today, I did one at a time. I'll try 2 again tonight.
Second CBC since Xeloda (2 cycles) no appreciable change in pancytopenia, however, it took 2 weeks for my hemoglobin to go down instead of 1 week. So, I'm kinda stable! Hoping that after 6 cycles we start to see an uptick in my CBC numbers and Madame X can stay around for a while.
Hope all have easy pill swallowing and HFS stays under control. Hoping Xeloda gives us all some good news.
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So I just wanted to share here that I am taking Xeloda during my stereotactic rads to brain this week. My RO was not too keen on allowing me to take it but I read that there are some clinical trials with Xeloda plus WBRT. My RO was worried about increased toxicity and necrosis. Here's hoping that my BBB is opened a little so I can get some Xeloda in there. So Friday will be my last Xeloda dose!
Warm regards, letranger
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My onc gave me my tumor marker numbers yesterday and I wanted to share some good Xeloda news: after 4.5 weeks of Xeloda they dropped 20% from 157 to 127 so looks like Xeloda is working for me! After a year of failed drugs, I am so relieved to get a good start with this one. My AST and ALT dropped a bunch, too, which might be Xeloda working on the cancer in my liver or might be that the previous drug was just really hard on my liver, but either way I'm not complaining.
Goldie, good luck with your appointment today, and Letranger, good luck with the WBR, may you both find your plans knock the cancer far, far away! And rnsparki, hooray for kind of stable! Hoping for good things down coming your way, and hope that for all of us!
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Roses,
That is wonderful!
*susan*
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Ranger, hoping that X did what it needed to for you and good luck with WBR. Altho, I have to say, I don't know what BBB is, other than the Better Business Bureau!
Roses, yay for lower markers!
I hoping my onc will let me stay on X, especially since I tried the 7 days on/7 days off, even tho I increased my dose. Will let ya's know tomorrow.
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Msparkl-stable is great!
Roses- so happy your TM went down. That's a great sign!!!!!
Let ranger- I hope your next med works for a long time!
Goldie good luck today!
I'm seeing my MO today for some info since she was away when my scan results came back and I was put on X. Today's day7. Yippee. Will be off for 7!!!!
Bab
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Bab, I am jealous! I am on 14 on/7 off so I still have 3 more days before the "break."
*susan*
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CT scan tomorrow. Day 10 of Xeloda cycle for me today. It has traditionally been my low point of my cycle and is today is no exception. I am thankful for this drug. Glad it is working for most and hopeful it does the trick for all those new to it. having done this dance for 3 years, I know I will rebound, but today is not my favorite (as I would say to my kids).
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just for clarification, I'm not getting WBRT, just targeting 2 brain lesions. 2 more days of xeloda for me. Would do it again in a heartbeat.
Good luck on your scans, leftfoot! And congrats to Roses that X is working!
And best wishes to everyone I forgot! Hugs, letranger
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I had my scan Tuesday and got the results from the diagnostic center today. ( I like to get the report before my one so I'm prepared for my visit with him.)
Good news! Even though my tumor markers haven't dropped, and my liver enzymes are much higher than they should be, my liver tumors have regressed in size! They haven't disappeared, but they have shrunk. I'll take it!
I am assuming now that the increase in my ALT and AST are due to the medication itself and the toll on my liver that it's taking. Not a great thing, but as long as my doc thinks they are ok, even if high, I'll be happy to stay on the drug. I will see him this coming Tuesday, so I'll hear how he interprets the results.
But I'm pretty happy about them. It's working.
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Letranger, sorry I misunderstood the WBR! But glad you don't need it, good luck getting those mets zapped!
Sandilee, that's wonderful news! Congratulations on shrinking tumors!
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And Goldie, I'm pretty sure BBB here is blood brain barrier (although cancer is nasty business, so...)
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Babs, I hope the 7 day schedule works for you.
Susan, 3 more days…you got this!
LFF, good luck on those scans. Such an anxious time for sure. The dreaded day 10 eh. Break is coming soon, hang in there. At least you know and expect that low point. Hoping that you can dance for a long time.
Letranger, good luck on those scans, and glad it's NOT WBR.
Yay Sandi! No reason why you shouldn't be able to stay with Madame X.
Thanks Roses, I had not heard of BBB in my years on the board. Too bad we couldn't turn this "nasty business" in to the BBB!
Onc visit went well. My original mets were in my spine at the base of my neck, there is some growth there, right hip which is the same and a new spot in my groin area, right side. Because I feel so good, and no pain, he if fine with me staying on X. If the markers continue to rise, then we will change. He did want me back on the 3 week schedule and he wants me to see if I can tolerate 6 pills a day, and I can do 3/3 pills or even 2/2/2. Sort of an odd question, but I know us girls here understand. Does anyone else have rather foul smelling bm's? Especially if it's D.
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After taking this morning's pills, I can see the bottom of the bottle!!!! *susan*
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Susan. Hooray for the bottom of a bottle!
LFF Good luck on scans. Sending positive vibes
Letranger- same for you. Good luck
Sandilee. Sooooo happy for you!!! Happy dance time!!!!
Babs
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Oh man has this stuff hit me hard today. My body now knows that these pills are chemo, and it is not impressed. Six more pills; one more day.
*susan*
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You can do this, Susan, one more day!
And Goldie, congrats on a decent appointment, hope the extra time on Xeloda does good things for you!
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susan- what are your symptoms? Are your toes swollen at all or blistered? What about your hands? What is it like for you?
I hope you feel better on your week off, but don't be surprised if you don't. Honestly, for me, the week off is harder, as everything seems to be seeping out.
Be sure to share your experiences with your doctor and NP if you have one. They may want to cut back the dose slightly. Good luck! 0
