All about Xeloda
Comments
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Hey, ladies! Can I pop in with in with some encouraging news?
I've been taking Madame X for 27 months now. Started taking it in October 2013 (fourth line of tx for me), right around the time my liver failed four times in three months, along with acute onset pancreatitis and a glued-shut gallbladder-- all probably because of sneaky lobular mets moving from my bones into my common bile duct, and basically destroying it. I had some surgeries, suffered horrid pancreatitis attacks every few hours, was in and out of the hospital every few weeks, dropped 25 pounds on an apple juice and veggie broth diet (gag!), and got three successive stents before we got the right one. Two years ago today, I came within a couple of hours of dying in the hospital from that fourth liver failure plus a big, messy biliary tree infection spreading like crazy.
All that to say, I was a hot mess by the time I went on this stuff.
Somewhere in the middle of that reign of terror, I was put on Xeloda to try to slap back the invasion and make the madness stop. My TM's immediately started steadily falling, and after a few weeks, everything in my biliary organs began to calm down.
Like I said, that was two years ago.
So now the good part! Today, I got my final labs for the year, and everything is still quiet and stable! Bone mets are still hibernating. CA 27-29 is at 15. Liver is sound again, metal stent in the common bile duct is still going strong. Amazing, right? I get to take a much-needed two-week break from Xeloda over Christmas, and I am really hoping that allows me a little more energy while my family (grandbaby!) is here. Will be right back to popping pills on the 26th, though!
I hope this can encourage some of you who are just starting out on Xeloda. Hang in there, everyone. Take good care of yourselves. Madame X can be a little nasty, but then again the mean girl might just be your best friend.
All the best to each of you.
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OMG Lulubee, I NEEDED THAT. Thank you. Myra
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Dear Lulu,
I really needed that! I start my second cycle on Sat. and I'm ready. Had a transfusion of 2 units of packed red cells today and an MRI of the head. MRI to monitor skull mets and the dull H/A I've been having after reading for 15-30 min. It could be Madam X, too.
Do the rest of you have debilitating fatigue? I know a lot of my fatigue is due to my severe anemia but even when my hemoglobin is almost in normal range I'm exhausted.
Myra, hope all is well.
Thanks for all the great advice.
Beth
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Dear lulu,
I'm so happy to hear how well X is working for you. I'm on my 4th cycle, and so far, so good. No side effects as of now. I haven't had a scan yet to see how well it's working, but so far, it's been super easy to take.
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Yay, Lulubee! What an inspirational post for those of us on this regimen! May you have many more good years with Madam X!
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anyone on Perception and Xeloda? I have been on this combination for about 2 months and have run into a little more fatigue and nausea than I have had before. Of course, they upped my Xeloda dose by one pill to 3500 mg from 3000, and I managed to catch that awful cold going around. And it is the holidays and I have 4 small children. So I am a little run down. But the nausea is new for me. I have been on Xeloda since december of 2012 so I am wondering what is causing all of this.
Can't complain as I am doing well on this combination so i am thankful to be here for another holiday season. This marks 5 since initial diagnosis and 3 since mets diagnosis.
Hugs to all
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Lulu, I hope you are able to get 2 more years..............times 10! How many pills are you on a day? And which cycle?
Sparki, I have fatigue, but not debilitating. Aren't you on 8 pills a day?
Foot, maybe it's that additional pill? And of course it could be the combination. I hope you can get it figured out. 4 kids is a lot to deal with when one is "normal". Let alone living with BC and being sick. I hope you are well for the holidays.
Merry Christmas everyone!
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goldie0827, thanks! I take six pills per day on a 7/7 cycle.
Merry Christmas!
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Just popped my first three xeloda a few minutes ago. Im excited to be able to do something about the cancer that i can see spreading but also scared about the side effects.
I finished treatment for stage 3 (acx4 taxol x12, umx, radiation of chest wall) just three months ago and was horrified to see bumps on my chest by the incision site after I returned from my "reward" trip three weeks ago. Diagnosed with regional recurrence last Wednesday. CT and bone scan not until next month due to crazy holiday season, but I am being treated with xeloda regardless since there is nothing else that surgery or radiation can do.
Crossing my fingers that xeloda does the trick because AC and taxol didn't.0 -
Hi all
Today will have a liver ultrasound. Yesterday received the news that my cancer is relapsed or will relapse - I'm having every two months test for circulating DNA in the blood. It can take up to 6 months before it can be visible on the scan or ultrasound but is possible to be visible now. So will check today. I feel hopeless. I've been on Xeloda since July this year. It is very easy chemo for me. Damn it!
Markers are dropping but the last month with only 23 points (previous month the drop was with 200 and 100). So maybe it is the beginning of the end. I don't know if I'm runing out of options.
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Lulu, thank you for the inspiration, very much appreciated! Congratuations on your success!
Kiss, wishing you the best with the scans and praying for good outcomes either continued with Xeloda or with the next drug.
I'm half way through my 2nd "on" week, I took Prilosec all the week before and now and I think it's actually helping, so far I'm a lot less nauseous. Hands still tender but they were much better on the "off" week so hopeful that they won't get too much worse. My first tumor markers after starting Xeloda are the first week in Jan--very anxious to see if it's doing something
And welcome, Rossileo, wishing you much success with this and easy side effects!
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Thank you For the good wishes,Roses. And hoping that xeloda works for you.
I'm new to this world and seems so unnerving. I'm glad to have started something, but now there's the anxiety whether or not it's doing anything.0 -
H/F syndrome is accumulative, mine didn't get bad until several months in. Good luck to everyone and Merry Christmas to all.
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Thanks for the info Goldie. So far I have no obvious SE, but obviously it's too early to think I've escaped the worst. Merry Chistmas to you. I'm in Tucson for the holidays and enjoying the AZ weather.0
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Rossileo, I'm in the NE part of the state. Up in the mountains at 6000', only about 20 miles from NM. Cold and very windy here today! ENJOY the nice weather!
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I give up! I just can't read all the pages on this thread that I haven't read. When I thought I would start Xeloda in July, I read everything. But now that Ibrance has failed me, I no longer have the stamina to read 18 pages.
It has been five weeks since I have had anything in my body, but tomorrow that will change. I will start Xeloda. My doctor claims that she is starting "low" with 1500 in the morning, and the same again at night. The schedule has me concerned. I have to take some Synthroid in the AM, and then I am not allowed anything to eat/drink besides water for at least 30 minutes. Then I have some coffee. I have never been able to stomach anything else before 10:30. On this drug, I can't wait that long. I need to take the Xeloda as close to 12 hrs from the evening dose. So, I have made some Irish oatmeal, roasted some pecans, and bought some dried cranberries. The jar of pecans and the jar of cranberries are sitting at my place, with the Xeloda resting in between.
Ibrance gave me some HFS, so I have some bag balm and gloves/socks ready to go. The toilet has been cleaned in case I need to vomit. I have ammodium and compazine on the shelf. Am I prepared?
*susan*
p.s. I look forward to meeting all of you, for what I hope will be a long, long time.
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Hi Susan,
I've been on Xelada for several months now, and I think you are prepared. I know how you feel about eating in the early morning. Sometimes I have a piece of fruit and yogurt, which I can generally get down early enough to take my pills.
Perhaps the biggest surprise for me is that my HFS is worse on my weeks off! My first Week there's little change, but by the end of the second, my fingers ar starting to get sore. On my week off, the big toes might swell or get blisters and the first three fingers get little cuts and peel. That's where I am right now- fingers sore with little cuts, and big toes sore and blistered. The good news is that my energy is good, sleep is good, no nausea or other unpleasantness(occasional constipation, only.)
I think of your dose as standard- not light at all. Mine has been reduced from there twice, to 2000.
Keep us up to date on your progress. Wishing you a good run with minimal side effects
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Hi, Susan. Sometimes-- particularly toward the end of the week on-- I just don't want to eat a full breakfast. And then sometimes I forget to take my evening dose with dinner and I realize at 11PM or midnight that I have to eat aGAIN just to get the pills down.
So last week I asked my oncologist if a piece of buttered toast would be enough, and she said yes. A cup of yogurt? Yes, she said, but a CUP full, not just a few bites. That helped me tremendously, and I hope it helps you, too.
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Hi Susan, I too hope we all will be here a LONG time. The H/F syndrome shouldn't start right away. I didn't get it until several months into it. I too have a problem with the morning food. Sometimes I just have a banana with a piece of toast with peanut butter and honey. Sometimes just a banana. I too am on thyroid meds. I keep the pill on my night stand with some water and when I wake in the middle of the night, usually to go potty, I take it. I think 6 pills is pretty high. I started out on 7, had terrible cramping and explosive diarrhea. And I got a horrible rash on my face and neck. I told onc I wasn't going to do this. He dropped me to 4 pills, then to 5 and now I'm on 6 pills, but doing 1 week on, 1 week off. Before it was 2 weeks on, 1 week off. I have not had any nausea. I've been on it since February. The rash spread to my arms, legs and back. I was advised to take Benadryl, and walla the rash is pretty much nil. I take mine in the morning with my coffee. I take morning pill around 6 am and night pill around 4 pm. Onc said this was ok. My hands are very dry and feel like alligator skin, feet are not too bad.
Kiss, if you are out there, how did your scans turn out? Sometimes my markers only drop like 10 or less, so don't let that discourage you.
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Man those pills are big! I needed about 24oz of water to get them all down. I served up a cup of oatmeal and simply could not eat much. I think I managed about a 1/4 cup plus a few nuts, cranberries and maple syrup. My stomach is making lots of "I am concerned" sounds, but so far, I am keeping both the oatmeal and pills in my body. I will keep trying this breakfast thing until I get it right. No point in taking these drugs if I am not going to be compliant after all.
Very helpful to know that I don't have to eat a huge amount to reap the benefits of consuming with food. Thank you for all of the encouragement.
*susan*
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I think the food is to help with the nausea? And who knows what this poison would do to our tummy's without food? I put the crunchy peanut butter and honey on my toast to bulk it up.
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Susan, I remember you from the Faslodex thread, welcome to Xeloda. I'm just over 3 weeks into it so no real advice, but glad to see another familiar face and wishing you great success with it! For what it's worth, my nausea was light and seems to be controlled with Prilosec and other than that the digestive issues have been very minimal, hope it's the same for you.
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Hi ladies, I am joining this thread since I will be starting Xeloda shortly, by my choice. I will be taking it with Tykerb since I am Her2+, anyone else here on this combination?
This is my fourth tx in 10 months. So far, nothing has worked for me. I was on taxotere, herceptin and perjeta, then adriamycin and cytoxan, then just recently Kadcyla. Nothing knocks it back and my TMs just keep climbing.
My mets are in my lungs only.
Any advice or pointers? My hair has started growing back in; I'm hoping I don't lose it again. Silly, considering my life is at stake. I will attempt to read this very long thread over the next several days.
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I'm starting my fifth cycle of Xeloda and it's been very easy. No hair loss, no HFS, no nausea, no nothing. I'm on 2000 mg per day (4 pills) which may be why I'm not having any side effects. So far, so good.
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Welcome Macy. I am on day 3 of my first cycle, so no experiences to share. Nor am I HER2+.... nothing i have read indicates that I will loose my hair, so I am not expecting that. I do expect to have some of the other side effects however. Will just see how it goes.
*susan*
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Macy- I was on that combination of drugs for almost 3 years. Just recently switched out tykerb for herceptin. PM me if you want. Biggest SE I had were fatigue, diarrhea and some issues with my toes. But nothing I would complain about.
Good luck
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Hi Susan
Looks like I'm following you-I start Xeloda tomorrow for liver mets that are growing. This is my 3rd treatment since February! I hope I get at least a few months out of this. I don't even know what my dosage will be. I think 2000 mg twice a day? I do know that I'll be on 7 days on 7 days off.
Babs
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Hi ladies, I'll be joining you all too tomorrow. Moving over to Xeloda from Ibrance due to progression. I have been dreading this; I'm so thankful that I can come here for info. I have a lot of reading to do even though I have tried to keep up for a while knowing that Xeloda would be next for me. I'll be starting with 8 pills a day (highest dose) but 7 days on and then 7 days off. Hoping that it's not too bad.
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Welcome Babs and Hummingbird.... I am only a few days ahead of you. Still figuring out how my body is responding. Still a bit of a mystery. Guess we can figure this out together, hoping for minimal side effects with great results!
*susan*
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susan, thank you. I am so grateful for all the support here. I'm feeling better already
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