All about Xeloda
Comments
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Beth I have that same shirt. I love it. I joke that I am very radioactive as I get CT scans every 3 months as well as brain MRIs. Have for the past 3 years. Which is why I love the shirt.
Good luck to everyone on this thread
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Susan
Just had dinner with my daughter and before she even said hello she asked me about my scan results. She asked lots of questions that I couldn't answer cause I haven't spoken to my MO yet.(She's away on vacation) It was interesting that she said she never really worriesabout my beating cancer because I'm the strongest person she knows and she just feels that I'll beat it- and she meant it!!! From her mouth to gods ears!!!!
Babs
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Babs,
Don't we wish..... how old is your daughter? Mine is 28 now. She has been married for a year now. She and the boy moved into our house when she began her doctorate. As any good mother would do, I helped her build a spreadsheet to calculate how much in student loans she would pay over 20 years for the money borrowed just for living expenses. Smart kids decided that staying with us would be a better investment in their future!
Though my daughter thinks I am nail-strong, she is pretty realistic. The fact that I am 6 yrs into this mets thing; 11 yrs since dx has allowed her to live in denial. This latest progression, so soon after starting a different drug following a progression, has thrown all of us.
*susan*
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Susan.
My daughter is 38 and not married. When I told her that I cried based upon the last scan results, she said she couldn't image my doing that-I'm always so strong. I guess she doesn't realize that I try to save her and my entire family from how scared and worried I really am. It is only here, that I let my true feelings out. So I thank all my BC friends and am so thankful that I have this outlet!!!!
Babs
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Xeloda + flu all in the same week. I feel like road kill. Anybody ever had to take a z-pak while on X? Just started one tonight because it looks like a secondary infection may be setting in-- fever and cough worsening after six days, instead of getting better. I think my immune system is ancient history.
One more day of X and then I'm done for a week. What I'd really like right now is a double shot of whisky, lemon and honey. But I think Madame X says nooooo. Blast it.
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lulu, oh no! I really feel for you. Hoping that now, on your week off, you can knock that flu out! Feel better.
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Beth/msparki, I don't know much about retirement, at 57, I'm too young for that, but I do get disability. I wonder if you can collect both, disability and retirement? Or would retirement give you too much money, therefore being declined for disability? They will also do retroactive pay for disability.
David, hoping the break gives your mom what she needs and she can go back on.
Hummingbird, was it like cramping you had. Double over cramping? I had that when I was doing 7 pills. I'm also getting it a bit right now. Currently on 1 week on/off and it's my last day of the "off" week, and I'm cramping!
Babs, why is it everyone thinks "you're going to beat this, you are strong". I keep trying to tell them, there is no beating this, eventually it will take me.
Lulu, that is awful and I'm so sorry. Our immune systems are def. low. I hope the z pak helps and you can get on the road to recovery.
I checked my labs yesterday and my TM's have gone up. And my scans showed some progression. I'm quite depressed about this, but yet my husband still acts as though everything is ok. I'm also having terrible D. I'll leave that at that! Guess I'll probably be back on for 2 weeks, with 1 week off. BLASTED CANCER!
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Lulu
I hope with your week off you'll be able to get rid of that flu. Take it easy and feel better!
Babs
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Hummingbird, I so hope that reducing the number of pills today makes it possible for you to take this protocol. Maybe it will help your body to ramp up your dosage. So sorry you ended up at an ER. A detour that you truly did not need.
Lulu, ugh.... flu too? I have this naive belief that once we present with mets, all other bad things should stop. No flu, no parents getting sick, no other bumps in our already rocky road. Sadly, the powers-that-be do not share my philosophy.
Goldie, when do you see your onc for his/her analysis of your TM's and scans?
I have finished one week of MadameX. I am slowly building a routine for managing the actual taking of the pills. I generally wake between 6:30 and 7, take the Synthroid, wait 30 minutes, make and start drinking my coffee, slice a very small piece of bread to toast and slather a La Vache qui Rie wedge, eat, take pills with a huge glass of water. Generally, I am done with all of this by 8:15 and I can get to work. Most days I need a small snack around 10 to keep the nausea at bay. Then the rest of my day is similar to "regular" life.
Speaking of work, how many of you are continuing to work while taking MadameX? I am starting to think that if I don't push myself to code for too many hours per day, I can keep working for at least some more time. But then I will have a day with a two hour nap and wonder how I can possibly keep at this much longer.
*susan*
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I have appt. to see my onc this Thursday. I have to admit, Ibrance is my next drug, for which I am a bit scared of. I'll email my nurse and ask her if I should go back on my 5 pills. 1 week on/off didn't last too long for me. I'm due to start tomorrow.
Susan, I'm usually up between 4-5 am, take my pills around 6, and then at night around 4:30 or so. And usually in bed before 7!
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Susan, thank you. And great that you have found a good routine. As far as working, I finally retired on disability last January. I was a high school math teacher and just couldn't do the clinical trials I was taking part in with all the time commitment necessary and the commute to my cancer center. In the beginning, I missed being in school. But then I was so glad to be able to sleep late and not have all that stress and responsibility. I now enjoy things that I just never had time for. And if I don't feel well, I don't have the worry of being in front of a class at 7 a.m.!
Goldie, I'm hoping that your progression is very very minor. But if you do need to move on to Ibrance, I want to tell you that it was a piece of cake for me. Don't be scared. I did get headaches for which I took Advil, but I was on the highest dose (125 mg) for 6 months and I was fine. Really liked that drug and hated to have to go off it.
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on the living a normal life front-
I went skiing for the first time in over 5 years today. Hands and feet survived. Very dry but they survived ski boots and cold weather. Yay for living life.
Keep at it everyone
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Congratulations LFF!
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Hummingbird, thank you!
Good for you LFF.
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This thread moves so fast!
Hummingbird and Lulubee, hope you're both feeling better now!
Goldie, so sorry to hear about your TMs. Are you saying they thing it was based on the dosing schedule? Sorry that you have to go back on a schedule you didn't like, but glad they feel like there's a good plan that doesn't involve harsher regimes. For Ibrance, like Hummingbird, I was on Ibrance before Xeloda, and for me I felt good on it, the only problem was my white blood cells could 't keep up and I had to keep stopping and lowering the dose. In the end, it wasn't very effective for me against the cancer, but that's not the case for everyone. Hoping if you have to go on it that it does a good job for you and is similarly easy for you to take.
As for the disability/retirement question, I'm working the same 30 hour a week job I've been at since before I was dx in 2012. Right now I feel good and I don't have any reason to go out on disability (I'm 46 so not looking at retirement as an option right now). It's part of the reason I really hope Xeloda does the trick and lasts a while. If I have to move on to IV chemo, I'm not sure how well it will work. I worked during my stage III chemo with 3 days off every other week during the first part and 1 day off during the second, but part of that was possible because it was only 16 weeks, not forever.
It's interesting the different reactions of our kids to this. My 16 year old puts on a good front and talks like I'm going to keep fighting this forever till my grandkids are old, but sometimes she lets little things slip that tell me how afraid she really is. I can't tell you how badly I want them to cure this for us all.
Leftfoot, glad you had a great time skiing and didn't have too bad a time with H/F or other side effects!
I'm off to oncology today for my first blood draw after a full month of Madam X. Tumor markers take a few days, of course, but I'm so anxious to see if Xeloda is working.
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Leftfootforward, yay for skiing!
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Thank you, thank you, thank you for that beautiful post. You could have been describing my last six weeks and I am desperately in need of some hope. ILC invaded my biliary duct as well (I was told this is rare?) and also seems to be coating my stomach and duodenal area. Two stents placed, horrible infection that landed me in the ER. Still surviving on liquid diet, still dealing with major stomach pain, but hopeful that taxol will make a difference soon. Thank you!
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Happy New Year!
I am in my first "off" week. The skin on the back of my hands have gotten quite dark! I think I may have read about this somewhere in this long thread, but just wanted to check in with others if they have this also? Also, some dark spots on the palms of my hands and bottom of my feet. I wonder if this turns into the blistering and skin peeling as time goes on?
Thanks for all the info and it's great to read about everyone's experiences with this medication. Very helpful!
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goldie, I live in the Upper Peninsula and I am a transplant here from other places.
I haven't started Xeloda yet--still waiting for insurance approval and for the specialty pharmacy to contact me. I hope Xeloda continues to work well for you!leftfootforward, that's great about the skiing! Did you have fun? I'm a snowboarder myself. Haven't been out this year due to lack of snow. I am hoping I still feel well enough on Xeloda/Tykerb to be able to ride.
I am enjoying this thread and everyone's experience with Xeloda. Has anyone not had any HFS while on this tx?
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Susan, you and I are in the same boat, but different order. I started on Ibrance shortly after Xeloda stopped being effective for me. I was every encouraged by my on nurse to keep on top of Xeloda and not be stoic about the HFS symptoms. the dose was adjusted while I was on it for 8 months. I would have liked to have been on it for 2+ years like Lulubee but the norm is a year. My onc stopped my Ibrance because of my liver enzymes and I will start a clinical trial January 20 for the oral form of Faslodex.
The tips here are all helpful and taking X with food is going to help with any stomach discomfort. Wishing you and all of the MBC sisters the best in 2016! It is a wonderful life!
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Goldie, I think I'm married to your husband's twin!! I am glad he keeps resilient and doesn't act like I'm a ghost, but I marvel when he wants me to do something that is strenuous for me (like hosting the company holiday party!) I was able to get out of hosting the party and enlisted paid help for the holidays. I love him so much, he is so helpful! We will be celebrating our 39th anniversary in two days!
Like you, I would have trouble with the Big D. The anti nausea drug stopped the D and stomach cramps, but then it plugged me up until I did a gentle enema on day 4. I have looked on the topic boards to see if there is a complimentary treatment to help. I have to drink only rice water and a kids nutrition drink when I am in the process of getting over whatever is in my digestive tract.
Best wishes!
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groovywilma,
I like you am on my first 'off' week and what a luxury it is to not time my meals. I also noticed that I am not as bloated as I was during my two 'on' weeks. So far only other SE are increased tingling in my fingers and soles and increased redness, not darkening.
Hope all goes well with you and minimal HFS problems
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LFF so happy you got to enjoy yourself skiing. We all need to do more things that make us happy!
I am on day 4 of X and noticing bloating, being tired (but lately I'm always tired) and some queasiness, but nothing too bad. I hope it stays like this, but we'll see.
Throughout this crazy journey I've worked FT. By moving into the city in July, I cut down my commute time from 3+ hours a day to 1/2 hr. per day-which has helped so much !!!! My DH and I are enjoying city living. We're taking 2 movie courses, go to lectures at the Y, see a lot of movies and shows, and go to a lot of museums. I want to enjoy whatever time I have on this earth doing what makes me happy. We moved only 3 blocks from my daughter and so we've been spending a lot of time together-going to the opera, ballet and shows and just laying in bed together watching silly Lifetime movies. Since I told her on Saturday about my progression, I've seen her everyday-which is atypical. I'm sure she's worried which breaks my heart. I hate to upset her.
Mountain-what drug will you be taking in the trial?
Babs
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Rossileo18,
Yes! I am enjoying not having to think about my eating schedule to go with the medications this week! And you are right about that bloated feeling. I was thinking that it was because I was just eating more and drinking more with the medications. I start back up again on Friday. I remember reading somewhere that some ethnicities have darkening of the skin on their hands. I am Filipino so maybe that's why I have the darkened skin versus redness. But if xeloda is working, then I don't mind! I'll keep my hands warm with mittens during the winter! Enjoy your off week!
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Groovywilma,
I'm ethnic Chinese. I guess my skin is also a bit darker, but it just seems mostly red. Just hope I don't get blisters, but yes mostly we want xeloda to work!
Rossileo
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lulubee, hope you are feeling much better now.Roses, good luck with your marker results. Hoping for good news!
So most of yesterday, I was in Urgent Care at my cancer center. This is after being in the ER at my local hospital last Friday night. I'm all blocked up and my belly is swollen and hard. The pain I'm experiencing is bad. I've been unable to move my bowels since last week and the gas pains are terrible. I get brief breaks and then waves of pain again. Hardly sleep. Now taking a strong drug to get me to go. Nothing yet though! If this continues, I will have another CT scan with contrast to rule out a blockage. Praying this clears up very soon. I'm exhausted! Taking a break from X while I'm dealing with this.
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Hummingbird, so sorry for the pain and trouble you're having, praying it resolves soon! I know constipation can be a Xeloda side effect, also a stress side effect, so hoping that's all it is.
Babs, you city life sounds lovely, and it sounds like you're making the very best use of it. Hope your daughter is comforted by being able to spend time with you and have you close.
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Well, my markers are up with 200 points for the last month. Liver ultrasound is ok - no progression there, so full scan on Friday. Maybe will have to stop Xeloda..... Damn it! Nothing works more than 6 months(if works at all).
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Kiss77, that really stinks, I'm sorry you're dealing with this! Hope the scan results are helpful and the next drug lasts a good long time for you.
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Thank you, Roses!0
