All about Xeloda
Comments
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Tumor marker went down after first cycle and just started my third and marker went up. Just can’t win. So sad today
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Oh Diana, how much did it go up? Maybe it's just a fluke. I'm on 2nd cycle and also wondering how long to show its working. I had a marker after theb first cycle and did not even look at it. I don't want to be disappointed until it's neccesary. When I was on ibrance my marker went up every month for 16 months! The scans showed it was working well though. The marker was very accurate for me before that on every other treatment. I stopped looking at to avoid the stress but at the end of ibrance I know it was over 1000. Don't be sad. It's probably a flare!
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HLB- I hope you are right. It went up nine points but they have been accurate for me for years. Not sure if dead cells can cause it to go up but it’s so hard to think positive anymore. Just the thought of going back on A/C makes me 😢. They will be doing labs again tomorrow. They are looking for a trend. I have to have my naphostomy tubes changed out tomorrow as well. Hate it!!!
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Hi Diana...It's been my experience on Xeloda that tumor markers go up and down constantly but with a long enough period of time, an upward or downward trend will show. Try not to worry about changes from cycle to cycle. If they went up this time, chances are good they'll go down the next.
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Linda- thanks for your post. It’s just a crazy roller coaster ride
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Hi All,
Have any of you experienced nausea from the part way through your cycle of Xeloda? I'm on day 12 of my first cycle and have not had any issues with nausea so far until last night/today. I woke up at about 2:00 AM feeling very nauseous and wasn't sure if I was going to be sick. I felt a somewhat better this morning but am still have a bit of an upset system. Is this normal? I thought once I made it through the first couple of days without any issues that nausea wouldn't be a problem. Of course, my immune system is likely tanking so it could be something else...
For those of you asking about how quickly Xeloda works, I was perusing the physicians protocol the other day (looking to see when to expect the nadir given that I work full time and want to try to avoid infection) and interestingly, it indicates that there should be a response within two cycles. If no improvement is seen in that time frame the recommendation is to move to another drug. Here's the excerpt:
Repeat every 21 days x 6-8 cycles. Responding patient may be continued on treatment at the discretion of the treating physician. Discontinue if no response after 2 cycles or unacceptable toxicity.
So, it seems to work quickly. I hope so... this train I am on seems to be moving fast. Diagnosed in January, now in my abdominal cavity and progression in my bones to the point that I am having issues with sciatica on my right side. Referral to radiation oncologist underway. Sigh...
Hope you are all doing well on the treatment and Madame X does her job!
Pat
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I experienced nausea and was sick a few times around halfway through my first round (where I was on 5000 - 10 tablets a day) I also got nausea and was sick once on my next round where I reduced to 4000. It did seem to come at the latter end of the round.
This last one - felt nauseous but wasn't sick. I have used Zofran on the first sign of nausea so I think I have held it at bay. I am also proactively preventing constipation (not great when you are nauseous - and led to double trouble!)
Xeloda side effects are best pre-empted - I try to moisturize in advance for my feet and hands, try to keep hydrated, pre-empt nausea and am rest if I'm tired. I am definitely feeling better in control now. That first round was horrific but the lower dose definitely helped.
Sarah
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I'm midway through my 4th cycle of Xeloda, 3000 a day for the past 3 cycles after the disastrous first cycle at 4600 which put me in the hospital. I get diarrhea at the end of the cycle but it's not horrible I have my first scan next Thursday, pretty nervous. I hope it's doing something, I'm TN and don't have a lot of other options.
I love Halloween and last night as I was blowing out the pumpkins I was thinking, I hope I get to see another Halloween. Hope Xeloda helps me.
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Hello Sadie,
I have been on Xeloda for 6 weeks and I do experience nausea during my one week on. Have not gotten actively Iill but it's been close. It seems to pass. But my appetite is not the greatest during my week on cycle. I find that during my week on I lose about 3 to 5 pounds. I presently weigh 99# but this is my week on.
What is the hardest for me is the fatigue. Sleeping 12 hours a night severely cuts into what is left of my productive time.
Sorry you are going through this. Hug!
Kerry
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Diana, I don't think I would worry too much about 9 points. I'm sorry about the nephrostomy tubes. Sounds miserable! Can you get them taken out eventually?
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Diana, I'd guess nine points is within the error margin of the test. To me nine points is no change. Dang on the tubes. That sounds horrible!
For those who were asking how long until it works, my TMs crashed down after two cycles. It's been 4 months since a scan, but we're unlikely to scan unless the TMs rise or I get some kind of symptom. Maybe next summer if all goes well.
No nausea for me but I'm on a pretty low dose.
In fact I was thinking about this. I [reliably] get diarrhea on the 14th day. Also on the 13th or 14th day my feet will blister or crack or otherwise cause problems. When I started X my onc told me these kinds of things happen about day 10-11. But he usually puts people on 3000/day. So at 2500 a day -- on day 14 I've taken the same amount someone who is taking 3000 would have taken by day 10. Hmmmm.
So aside from being careful of my feet days 11-17 (I lotion all the time but those days I make SURE I've got on comfy shoes and thick socks) and knowing my bowels will open up on day 14, I think this is a pretty easy treatment. Bless my onc for the decision on the dose.
One more trip next week (yet another talk. I feel like I've done nothing but give talks for the last six weeks which isn't true) then I'm home for almost an entire month. Yay!! Anyone live in San Antonio and want to have breakfast next Wednesday?
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Hi ladies,
First cycle of X is done. I have to say that my shortness of breath is a lot better ( what a feeling to breath again), cold sweating and temperature spikes have gone. Appetite is a lot better too. I am more mobile and can think of something else than cancer. I noticed these on days 9, 10.
Been to see my doctor after the 14th day. the TMs were raised a bit but he was not concerned. He said it's early to say if x is working or not, we will need some two, three months to tell. But he was generally happy about my improvement.. I, myself, think x is working, i don't know why, just feel it
.Thank you to those sisters who promised i would get better. I kept reminding it to myself in the midst of terrible misery.
Anyone here who had symptom improvement, can you share when it happened?
SE wise, i had very minimal, nausea and a little tender palm and soles, but keep applying urea cream which helps.
Nice weekend to you all.
Love, Karina xxx
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Still in my first cycle of X at 7/7. Just started the second 7 days and this morning when I checked the tumor I have at the original site I had trouble finding it! When I started X two weeks ago that tumor was the size of an almond and midway through the 1st round it is now difficult to palpate. I sure hope the other tumors in my bones and liver are also responding...side effects are minimal to date. A little nausea, very dry hands, and the feeling of extreme fatigue but I will take it and adapt if it slows down the monster.
Here is to hoping we all have a very, very, long run on this treatment.
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Oh frapious day, callow callay. Take that Mr. Spell Checker!
Great news, oncology nurse just called. Xeloda is working with further reduced mets. Not much detail, though, as next Friday we meet with the oncologist. Previous PET/CT scan also showed it working, slowly, but working.
It seems I live from PET scan to PET scan.
MIkeW.
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Diana, TM's have been pretty reliable for me too. I've been with Madame X for almost 3 years and occasionally mine will go up. But then they come back down. Stick to it and just wait till the next few labs and maybe they will go back down. Mine have done this a few times. Are you feeling ok otherwise? I hope so.
Same to you Grig.
Schwilly, I don't know how you withstood 10 pills, I am in shock. I couldn't do 7!
Minx, good luck with your scans and may you see many more Halloweens!
LOL Mike at Mr. Spellchecker. How often do you get PET scans?
As for me, I'm doing awesome. SE's are not fun, but doable for sure. I'm really liking this 1 pill (500mg) 3 times a day, no break. But after doing it for 3 months now, my onc said it was ok to take a week off, since I was on vacation. Back on it tomorrow. I love life!!!!!
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Mike - Glad they called you, a wonderful weekend of peace to you.
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I did 22 months on X, aka capcitabine. I found the nausea was best managed by taking the pills in the middle of a meal. Eat a part of your meal, take the pills then finish the meal. If you for get, be sure to eat something bland before you take the forgotten dose.
Use lots and lots of lotion on your hands and feet, starting as soon as start X. Hand foot syndrome emerges later in the course of treatment. Soaking my feet in room temperature water helped relief the pain.
Jo
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Goldie0827, my wife has been getting them, generally every 3 months, while her cancer is active. Next one is 6 months away as the cancer is in decline. Note, though the PET/CT shows cancer on the run her TM's are on the rise??? Her Oncologist says, for some people, they just aren't that reliable.
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Karina, I'm so Glad you are feeling better!!! I hope you have a wonderful weekend and things continue to get better every day!
Goldie, I am very interested in 3 pills a day with no break. It's too soon to tell if it's working as is, but I want to ask my onc about it in the future. I hear it works in a completely different way though.
I am on my week off and feel a lot better except for my dry and light sensitive eye problem, which only seems to get worse. I really hope it's not permanent.
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Goldie- I actually feel better on Xeloda then I have felt in probably two years. I can eat and go to the bathroom. Big accomplishment for me. I get a tired spell in the afternoon but it passes. I am very busy lately so it keeps my mind on other things. Been making ornaments for craft fairs my sister is doing. Will try to post a picture of the ones I have made.
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Clay ornaments I’ve been making for some craft fairs my sister is doing.0 -
I love your ornaments! I am a knitter but I seem to have lost my knitting MOJO lately.
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Oh, Dianarose, fun. I remember painting ceramic ornaments so long ago. Cute snowmen and cottages.
I am so afraid the Xeloda will be taken from me as I am asked to trust a new drug. I am taking 2 in day and 4 at night. When I am on a new chemo I want to take the 1 pill 3x / day, no breaks. I hope it will be allowed.
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Mike the doc is right, TM's aren't always reliable. But for some they are, it's how I discovered my mets. My doc was not concerned until I brought it to his attention that they were creeping up. This after my 5 years were up and I insisted on keeping my 6 month checkups until I reached 10 years and also labs. And that's not to say that the cancer isn't doing anything either, it very well could be. Just praying it isn't.
HLB as for my eyes, they did not get better. I can not go outside without some really dark sunglasses and a lot of times I have to wear them when it's cloudy out. And no matter what I put on my feet and hands, the HFS does not ease up. I get cracks in my feet, mainly on the bottom/outer edges around the heel. If my tumor markers go up again, I will go back to 5 or 6 pills a day 14/7, or I will wait and see what the next labs show and then change. I've changed my regimen many times. Notice I say "I've" changed it.
Diana, that's awesome that you feel better with Madame X. It really is a very doable chemo, much better than IV. What cute ornaments. Good luck at the sale. I think we all deal with the fatigue as well. Just no getting around it. And I do get around 10 hours of sleep, when I used to be able to get by with 6…oh well.
Bluebird, what is the new chemo? And I say, if you want to try 1 pill, 3 times a day, go for it. This is YOUR body. The doctors don't know what is going to help us, no more than we do.
Ha ha, I got a new iPhone 7 plus. Did the finger print thing to unlock it. It won't work! Guess X has taken my fingerprints!
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Read online that Clobetasol is supposed to help with H/F. I just happen to have about 20 tubes of it. Gonna try and will keep you updated.
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I also have to wear dark glasses no matter what the weather is, not to mention the scratchy painful dryness. Call me crazy but if it gets any worse that is reason enough for me to stop this med. Pisses me off. Most things have eased up on my week off but not the eyes for some reason.
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Does anyone have an extremely dry throat day and night and think it could be an SE of Xeloda?
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Interesting question. I hadn't given it much thought but do wake up with a dry mouth, and this morning, a bit of a scratchy throat. I would imagine this could be the Xeloda as it can cause mouth sores. I didn't have actual sores during my first cycle but it was definitely a bit funny so made a habit of rinsing. I stopped now that I am in my week off. Do you rinse with baking soda and water?
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Bluebird, I can say that I don't think I have dry throat during the day. At night....sometimes. But not sure I would associate it with X. I keep water at my bedside in case I do wake up thirsty.
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Just wanted to give an update and to give encouragement to all of you starting or new to Xeloda. I got my first scan results (after 4 rounds of Xeloda) and my liver lesions have almost all shrunk (one 4.4cm now 3.1cm, another 3.1cm now 1.5cm, one 1.5cm stayed the same size).No new lesions and nothing found outside of my liver.
So happy after my last scan in August showed progression on Ibrance. After a shaky and chaotic start and managing all those pesky side effects it feels all worth it!
I wish you all well and successful treatments. I am sad that X is not a solution for everyone but I wanted to give some good news. I'm continuing on 4000 - 4 pills twice a day.
Sending love
Sarah
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