All about Xeloda
Comments
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Nice to hear people planning trips etc.
Bluebird, Hope you have a good palliative/hospice team that compliments your wishes and concerns. You are a strong woman.
Any one have stomach cramps like ......most of the time? I have been taking Lactaid as I learned that Xeloda has lactose in their fillers, but that hasn't helped much. I may have to dose reduce. Ideas?
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How many pills Linda. I had double over cramps when I first started and that was with 7 pills a day. After reducing dosage, cramps went away.
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Goldie, I'm starting cycle 6, and take 6 pills a day. How much did you reduce?
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Lindalou- I had bad cramps during cycle five . Just finished six with no issues. Keep telling myself that there was a war going on in my tummy and more of the little bastards were taken out
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Linda, after the 7 pills, which was causing double over cramps and explosive diarhea, I was taken down to 4, then 5 and then 6. I got a horrible itchy rash over almost my entire body on 6. So I went to 5 (I think) and then somewhere in there, not too long ago, I did 1 pill, 3 times a day with no break. That was super easy, but TM's started to rise so I went back to 5 pills, which is what I am on now.
When I was on 7 pills, I told my husband I wasn't going to live like this, would rather die. But did not know at the time that a reduction was possible.
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My wife's Stage 4 ER+ turned triple negative some 8 months ago. She's on Xeloda with 7 days on and 7 off with three pills in the morning and 2 in the afternoon. He's also having Zometa infusions for her bones as the mets are in her spine and hip. Most of her mets have been eradicated with a few stubborn ones in her hips.
She's had painful SE, mainly H&F. On her last oncology visit the nurse had some tennie runnners with an air cushion and she said they are very comfortable. Can anyone recommend a good brand of sneakers. She wears leather ones and they hurt her feet.
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Sketchers with memory foam are pretty nice. I like to put all my goop on my feet and then wear some silicone socks (for swimmers) for a few hours at a time.
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Shoes -- for running shoes/sneakers type I go down to my local running shoe place. The place that marathon runners go. And I tell them I need the most supportive and cushy shoe they have. I think my current ones are Nikes.
Regular shoes my favorite store is ComfortOne in DC. I'm going in April (as I have a work trip to DC). Walking shoe company might work too. Just tell the salespeople you need cushiony shoes. The sketchers do look nice.
Slippers -- my Mom bought me isotoners for Christmas. I LOVE them! It's like walking on an inch of air. They'll pack down and I'll eventually have to buy another pair but I think they were about $20.00.
Has anyone tried insoles?
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Pajim, I have tried gel inserts. Wasn't too impressed. I like the Sketchers. I can't do a whole lot of walking as the HFS is pretty bad and gets aggravated if I walk too much. Concerned as I have a trade show to do mid March!
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Goldie and lalady, I have learned to adjust my own meds too as needed. Sometimes by the end of the cycle I am just too tired or having eating issues so I stop a day early or skip the evening dose. I do get some cramping sometimes particularly if I am eating well. LOTS of built up air but could be due to ascites as well. Learn about scan results on Friday. He asked that I be the last patient he sees at the end of the week which kind of has me wondering??? SUPER SCANXIETY!!!!
lalady, good luck with the face mask appt. Sounds daunting but Z had some good suggestions the make it do-able. Also have a great Cruise!
Lots of people have said sketchers are excellent shoes for the H & F. So far I just cruise around my house in sheepskin lined slippers and no issues yet.....
Mike, good news about the mets disappearing!
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Goldie - I don't have brain mets - rather a skull met that went to my dura (considered a bone met). My second MRI helped pin point the nerve that the cancer is impinging and causing the eye issue. I had my mask molded today and should start about a month of rads next week. This mask is a lot smaller than those for brain mets, so I am grateful for that. No one likes this, but it's needed. So far day 3 of x is ok. Nothing happening with hands or feet yet.. Planning a job interview in NY (job is in LA) in April. Hi Artist - hope you are doing well. Taking notes on comfy walking shoes.:)
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I'm on my second cycle of Xeloda. 2000 mg (4 pills) twice a day. So far, side effects are fairly minimal. Some GI issues, but all manageable with other medications. I think they are actually being caused by the Tykerb, which I am also taking. I'm eager to see if the drug combo is doing the job, but I'll need to wait a month or so for my next scan.
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Lalady, I hope you saw my post to you on this thread Feb 3. You had a mask before, didn’t you, for rads to the jaw met? What is happening to your eye? I’m so disappointed that the A train dropped you off at a lousy station.
Artist, good for you, managing your dosing. Do you think they will give you scan results on Friday so you don’t have to wait the whole weekend?
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Snowfall, I hope the GI troubles ease as your body adjusts. Try to delay scanxiety for a while if you can!
Lindalou, I wish they would stop putting lactose in pills. There are so many people who are lactose intolerant, they need to come up with an alternative. It’s hard to tell for sure what is causing your issues. Maybe talk to some of the oncology nurses at your hospital? Nurses scan be really great with practical tips and solutions; often better than doctors in my experience.
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Lady, I too have a very small mets in my skull. I think 3 of them. Onc doesn't seem to be too worried. The HFS takes awhile to make its appearance.
Snow OMG, I don't know how you tolerate 8 pills. I couldn't tolerate 7.
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Ugg, HFS is starting to get rough. Outside of lots and lots of lotion and cushy shoes does anyone have suggestions on how to deal? I have tried icing but that doesn't seem to be of much help once the ice is removed. Fatigue is also becoming a problem.
Any thoughts or suggestions?
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NO1, There is nothing to fix it. You can only do things to ease it for the time being. I started lubing my feet and putting plastic grocery bags over them and then socks. Leave on for a few hours and then let my feet get some air. Then I bought some silicone socks and use those now, as the bags would leave ink on my feet.
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Goldie, thanks for your kind reply. X is working so well for me at this time I really do not want to risk making changes etc. simply due to the inconvenience of sx. Just wish there where things that could be done to lessen them.
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Hi Ladies. New to this very soon. Starting Xeloda next week. Even if it sounds stupid, but I am scared that this is my last "hair-keeping" option. I was on Afinitor. Failed after 2 years. I was on Ibrance. Failed after 8 months. I like my "normal" life. I know, I am thinking too much ahead, but are there more Pill-options for stage 4 without the hair loosing part. I was also 4 years ago on Navalbine, Doxil and Faslodex. Let me know, Love and peace from Montreal.
Carol
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Question for those who have been on Xeloda for awhile. Do your tumor marker continue to go down or does it seem to get to a number and hover around that number?
Mamita- I have been wondering the same thing. Pill form is so much easier.
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Goldie, I may be bigger than you: 5' 6", almost 200 lbs. I suspect that makes a difference with the dosage. I also have been eating a full breakfast and a full dinner before taking the pills. The one day I went with yogurt and toast for breakfast, I got a stomach ache.
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Shetland, they posted my results today which I like as I like to have the heads up alone before facing the Dr. It was mixed but mostly good to me. A few new minor "scattered foci" in my liver but the big one is stable as well as pretty much everything else. My biggest concern is finding something to help the peritoneal ascites. This worries me so much as it is generally aggressive and is such a misery. I now have to go in once a week for a paracentesis. Yesterday was a bad one with a reckless radiologist. I was in tears. So I don't know if he will pull me off Xeloda yet or not. I hope not. I am hoping to get some milage from this one......
Dianarose, I will have to tell you Friday whether my TM's have shifted or not.....The don't post my lab results and I always have to ask for them.......
Goldie, I can barely tolerate 5 pills but feel I should maybe increase to work a little more effectively.....
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Checking in ladies - lol on my wild D today, glad I am working from home. And now we know which way x will treat my stomach (D not rocks). I am doing ok except for some rib pain, getting ready for rads next week. Z - when do you return to Japan - or is that postponed with the new onc? Shetland - glad you are doing well on this protocol - so nice to hear from you. 6 pills a day or bust. 7 if you count a little xanax (the other x) for my rads mask. oy Carol - there is abemaciclib too.
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I have not lost any hair on X.
Snow, I am 5'9" and 145 lbs. A few months ago I started dropping weight, even tho I was eating normally. Got down to 130, I was so so thin. It's all back now tho. Was just so strange! With that many pills, I would think you would need more to eat. Sometimes in the morning (2 pills), I can tolerate them without eating anything. Just not sure that's a good idea tho.
Artist, 5 pills is easy for me. I don't know why you would want to increase if you can barely tolerate 5? And IMHO, if you wanted to stay on longer, but onc wants you off, I would stay on until the next test.
Lady, I've not heard of that one, abemaciclib. Will have to look it up. I assume it's a chemo? Is it targeted to certain types? ER, PR, HER2, etc.
My TM's have been up and down on X, but the last 3 labs, they have gone up each time. Not a lot, but still! Do labs today. I'm scared! Hate this disease so much. See my onc on the 15th. I too like to see results before seeing the doc!
Abemaciclib On September 28, 2017, the Food and Drug Administration approved abemaciclib (VERZENIO, Eli Lilly and Company) in combination with fulvestrant for women with HR-positive, HER2-negative advanced or metastatic breast cancer with disease progression following endocrine therapy. In addition, abemaciclib was approved as monotherapy for women and men with HR-positive, HER2-negative advanced or metastatic breast cancer with disease progression following endocrine therapy and prior chemotherapy in the metastatic setting.
Here's a link if you want to read more.
https://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm578081.htm
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Goldie - glad you are doing well for so long on x! Abemaciclib/Verzenio is an Ibrance cousin (CDK4/6 inhibitor) which has shown to be 40% more effective on pathway 4. It can be taken alone, which helps if you have become resistant to AI's. Should be in a lot of our pockets for the future (has been more effective than Ribociclib/Kisqali in several tests). Thanks for posting the link - should keep our hair on that one too. Let us know what your labs look like - ditto Artist.
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Artist, I asked this on the liver mets thread already, but have you looked at Bestbird’s guide to see if there is anything helpful for peritoneal mets and ascites? So sorry you have to deal with this. Please refuse to let the reckless radiologist treat you again. Everything that can make your experience even a little less awful must be done.
Lalady, thank goodness for being able to work at home. Hoping your D troubles will ease. I think after an adjustment period they might.
Goldie, it’s good your TMs are not climbing quickly. Keep us posted.
NO1, I did read an article that suggested some possible ways to reduce hfs, such as vitamin B6 and COX-2 inhibitors. Ask your onc. But it may be that only a dose reduction will help.
Welcome to the X thread, Mamita.
To answer your question, Dianarose, my TMs went down steadily and have stayed essentially the same for a few months now. But I’m sure there is a lot of variation as everyone is different, and every cancer is different.
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Here's at my TM's look like. Highest ones in red.
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Well it looks like my run on Xeloda will be brief. Barely 6 months. My first CT scan on it showed in had shrunk my lymph node tumors some, but my most recent scan from last week shows they are growing again. My oncologist want to try radiation next, so I'm going to try and set up an appointment for when I get back from Norway. I am very dissappointed. Xeloda was finally getting to be quite tolerable. Well, best of luck to you all, hope you have a nice long run with Madame X!
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Goldie and Shetland, thank you so much for your responses. I was at the cancer center to pick up my next round of X and ran into the pharmacist that works with my MO. She asked me how I was doing on X. I showed her my hands and told her my feet were even worse and that around day 5 of the 7/7 I could hardly walked she suggested I talk to my MO about a dose reduction. I asked her about B6 and her response was that it really does nothing for HFS. B6 is sometimes used for nephropathy but not for HFS. Darn.
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I am so frustrated that there seems to be little for the docs to suggest for HFS. I've had a number of episodes of very bad issues - peeling, blisters and quite bad tenderness. First I did a dose reduction, down 2 pills a day. The next time I had v sore feet my MO thought I should come off! I was a bit miffed because I had such great scans and I didn't want to abandon a treatment that was working. So with her agreement I stayed on - took an extea week off and dropped a pill a day (my MO thought I should drop two but I naughtily had some spares and as I was successful my doc agrees and I'm staying in this dose) My feet got better - I think a big help was making sure I kept them cool (I got myself a cooling gel pad for my feet in bed) and really really moisterised them night and day (I use Udder cream - a pot fir mitnjng and nihgtime and I always carry the hand cream with me) Uwouldlive to have a dolution if this darn twnderness. So now I wait for my next scan on Feb 15th.
For those with pain in their sides. I've had this since I was DX with mets. Then it was v severe and thats how I was Dx'd. It waxes and wanes. At first I was worried it was a sign of progression - but I feel its also, and maybe mainly, a sign of the drugs doing their work. I certainly had pain before my last scan - where two spots in my liver reduced, one by 50% and another by 30%. In the end I know only the scan will reveal whether Mdme X is working but it helps me feel calm when I notice the pains.
Sending hugs and healing thoughts to you all. I'm in Boston this weekend, meeting up with my son who is a freshman at Emerson College and trying to enjoy each day. Excuse my tired and travel weary look but here we are!
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