All about Xeloda
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@snow-drop I forget if you told us what dosage you take. I was having trouble with mouth sores and dropped down to 2500/day. Maybe you could ask your doc to do the same for your HFS.
I really don't have any HFS issues. I have no fingerprints but they are just smooth and not cracked. My toe tips sometimes get a little flakey and where my feet touch the ground they are red, but no pain or peeling. The skin feels "thicker". Search "hand foot syndrome" one here and you will see some research articles about diclofenac and urea cream. I have stopped using the diclofenac but I have had great success with the urea cream (Udderly Smooth). I am quite faithful to it twice a day.
I wish you the best on X and hope it whacks back the cancer!
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@denny123 Congratulations on your new port. I'm crossing my fingers that your infusions go well from now on.
@snow-drop My MO has me get PetScans every 3 months or so.
For M/F he prescribed Voltaren gel which I use twice a day and it seems to limit the side effects at this level. It's an ointment that we usually use for rheumatism. Otherwise I cream my hands several times a day and I will avoid putting them in too much water. For the feet I add a nourishing cream in the evening and I put on socks at night.
Reducing the dosage (from 3600 mg to 3000 mg) and switching to a 7/7 schedule instead of 14/7 has also been very beneficial for me. It's worth discussing this with your MO.
I wish you all the best for the future with the Xeloda.1 -
I'm back to give you some news after 4 months of Xeloda. Last week's Pet scan showed good results with disappearance of bone and lymph node metastases and the blood test continues to show a decrease in liver enzymes. My markers are down too. Nothing but good news, I hope it continues. I'll be able to take advantage of spring and start looking after the vegetable garden, which makes me more zen to get through the ups and downs of this disease. Good luck to you all.
Translated with DeepL.com (free version)
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@soldanella that is GREAT news!! I love getting these reports. And yes, I agree that gardening is therapy. Another hobby that keeps us sane. Thanks for sharing your news! Enjoy the wet dirt!
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@soldanella That's wonderful news! You deserve the zen, so enjoy it!
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@soldanella Great news and I hope that it continues to work well for you! I agree about gardening since I am looking forward to it. I am in PA and it snowed 3 days ago!
Darn
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Thank you for your support. There's been a spell of fine weather, which makes you want to start planting, but we can't rule out snow next week. Patience, patience ;-)
@denny123 I hope your Herceptin infusions are going better with your new port.
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@soldanella My next chemo is tomorrow, but the one 3 weeks ago went very well! I did take a pre-med of Tylenol, but probably didn't need it.
I didn't have my usual pre-saline and I didn't get my usual chills and shaking. I thought those were from the Herceptin being room temp, which is colder than my body temp. But maybe not.
I am anxious to see if my IV's are normal now, which means that my 3 years of problems were all caused by the bacteria in my port????
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@denny123 It's great that the last infusion went well, which would mean that your doctor reacted well. Have a nice day!
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Yay again! I had another Herceptin IV and am okay. So apparently the chills and shaking that I started to have 3 years ago were caused by the bacteria that was in my port.
Nice to be back to my normal. I turned 76 yesterday…..ugh. And I do feel my age.
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@denny123 Great news that these injections are going better now. Best wishes for a happy new birthday 🎂😘
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@eleanora Thanks! My daughter and grandson help to keep me going!
@soldanella Thanks! Nothing like a good chemo appointment to make me happy! We don't ask for much, do we?
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After having my LFTs rise a little every week now, I asked the doctor about trying the week on/week off deal because she thinks its the X that is causing it. For those of you who have changed to that, what benefits did you see? My onc is not convinced it's due to liver progression because my bilirubin is perfectly fine.
I have had significant tumor markers increase and some pretty severe stomach pain to the point I went to the ER and they found NOTHING wrong with me…. well, besides the same cancer I had at my last scan. Good news but frustrating. And now I have developed severe shoulder pain that is intermittent. She wasn't concerned about that or just seemed unconcerned.
I think my onc is just trying to keep me calm, but she also made "stat" appointments for scans and gave me the "tumor markers may rise when the cancer is dying off…yadayada" which I am not sure that is a thing. Ugh!
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@dulcea Sorry to hear your LFT's are creeping up. So I found 7/7 easier to tolerate fo sure. My HFS is not as bad and fatigue starts creeping in on day 7, then done. When I was 14/7 I felt like the cycle was never ending and SE were more difficult to deal with. I have had LFT issues before but luckily so far been ok with Xeloda. Hope you start to feel better soon.
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@dulcea Sorry to hear about everything you're going through at the moment. These periods of doubt are always very distressing and as soon as new discomforts arise I get very stressed; Fortunately my oncologist is very attentive, that’s a blessing.
I join Cookie54 on the benefits of a 7/7 schedule. My stomach pains have disappeared. My bilirubin is increasing because of the Xeloda, so sometimes the liver is a little heavy but the other liver values are decreasing.
As for the markers, they also increased at the beginning of Xeloda and are decreasing now.
I hope that your next scans will be perfect and that you will get through this unpleasant period quickly.2 -
@dulcea I agree about the 7/7 schedule, as I was changed to that about a month after I started on X. But, of course, the HFS was really caused by my folic acid food intake.
But it works just as well for me to take a break after a week. I guess that my LFTs are okay since I was never warned about them. My CA 27-29 has never been accurate, so it is ignored. My 15-3 is normal. But since I was off chemo for 2 months with my chest port staph infection, I don't know how my liver is currently…until my next CT scan.
Have you done any physical activity lately that would impact your shoulder? I have been weeding my garden, and now my arms ache.
Do you have many tumors in your liver presently? Sorry, but I forget.
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@denny123 @soldanella @cookie54 Thanks everyone. I am looking forward to not taking so many pills for 14 days straight. I always have looked forward to the week off, but now it will be more often.
I have not hurt my shoulder lately, but since I like to kayak have noticed over the years, it's getting stiffer. This comes and goes. It can be barely there in the morning and then hit me like a brick in the afternoon after having done nothing with my shoulder. That's why I think it's referred pain from my liver. They describe my liver tumors as "innumerable". The biggest one is 6cm but most are tiny.
I will just have to wait and see on everything. I hope I don't have to change meds again. I am going through treatments…like water (what's the expression?). My tumor markers have never been reliable either. ONe is still in the "normal range" but both took a huge leap up where they have mostly been normal/stable all this time.
I am glad everyone else is doing well.
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hello everyone. I am just going to be starting Xeloda and I am wondering from your experience, should I take anti-nausea meds right away, or wait to see if I need them? Also do the doses have to be exactly 12 hours apart. Am I correct that each dosage should be taken after a good sized meal? I haven’t been a big eater for awhile. Thanks for any into you can give me. Oh and how often do I use the Voltaren?
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Hello @gigil.
Thank you for reaching out to the community forum. Since you're starting a new medication, here is a helpful resource on Xeloda that might offer some guidance and support.
Xeloda: What to Expect, Side Effects, and More
Hope you find it helpful.
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Thank you. However I am most interested in rel world experience.
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@gigil Hey there! I'm in my 3rd cycle of Xeloda. When I started, because I'm such a chicken when it comes to nausea, i preceded it with Compazine "just in case". After a week I decided to wing it. It didn't make me nauseous at all! I take 2000mg twice daily, always after eating.
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justsnapd8 thank you for that. I am going to start tomorrow. Here’s hoping.
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@gigil I am on my 8th cycle and had a few very, very mild nausea waves (didn't last more than a 1/2 hour or so) when I first started. Other than that, no nausea and haven't taken anything for nausea. The only remedy I have needed on Xeloda is Miralax but that seems to be over with now and everything seems balanced in that department.
I wish you the best on Xeloda.
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@gigil Hi there , like dulcea I get a slight nauseous feeling once in a while that passes quickly. I have never had to taki any anti nausea meds at all. As far as doing I was told by the speciality pharmacy that 10-12 hours apart within 30 minutes of eating was fine. I find it best for me on the 10 hour schedule so I take with breakfast and dinner. It's nice to have the latitude to have the 12 hours especially if I'm out at a party etc.
I rarely use Voltaren anymore as I have trialed so many different lotions and that just wasn't the best fit for me. When I was using it was a pea size amount twice a day. Also you may have read already on this thread, limited folic acid intake made a huge difference in my hands and feet. To sum it we all experience the SE a little different so you will find what works best for your body.
Wishing you all the best as you start X and I hope it beats back your cancer!
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@gigil I have been on Xeloda for almost 7 1/2 years. Please limit your high-folic foods and that will make a major difference in your hand and foot problems. Google to find the 15 foods that are highest in folic acid and eat those only in moderation. No folic acid supplements, and no multivitamins with folic acid.
I suffered badly for 2 years until I remembered reading about the folic acid food connection. Since then my hands and feet are only dry so I use Aquaphor or Gold Bond diabetic cream. I would never use Voltaren since it can be harmful to the liver and my hands and feet no longer burn since I watch my folic acid foods.
You can take the pills from 10-12 hours apart and a half hour after a meal or snack.
I don't get nausea, so wait and see how you feel. For constipation, I take a dose of Miralax and 200 mg of stool softeners every evening. But some ladies get diarrhea, so wait and see how it affects you.
I am on 2,500 a day at 7/7. My onc won't give anyone more than 3,000 a day. And since I have had MBC de novo for over 23 years, I can be a difficult case.
I am also on Herceptin.
Good luck!
Denise
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Denny123, Cookie54,and Dulcea thank you so much for the helpful information. I will start my pills today now that I know how to go about it a little better. I find actual experience from you ladies helps me more than anything I red in a pamphlet! 😍
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Hello ladies! I don't even know how to fill out all my "bio" mess and will figure all that out later. I'm assuming it's easier on a laptop vs Android? I was a member here years ago when I was initially diagnosed 3c in 2012. The problem is, I forgot my user name and password. 🤭 13 years since my initial diagnosis on April 23rd and I am stage 4 now.
I just started Xeloda on the 21st so I made it through 4 days! I'm on the 7/7 schedule at 4000mg/day (2000 am and pm). Actually, that's what I am prescribed but the truth be known....I am cautious and start low. 😂 Day 1 and 2 1000 mg. Days 3 and 4 2000 mg. Tomorrow I will begin 3000 mg. Besides anxiety, I haven't really had any side effects apart from constipation. I started Dulcolax stool softener today. The first day I just sat there and stared at the pill, had a mental breakdown, recovered, and swallowed it before I could change my mind.
Thank you all for sharing your journey and experience. I really loved it here before and was NED 2014-2021. I had a small skin met recurrence that was removed, a small sternal lesion zapped with gamma knife, and switched AIs. I was NED again until last summer and it came back with a vengeance. I'm so over it.
So.....new to Xeloda but not to breast ca (unfortunately). HR+, HER2-. Developed a lovely mutation that renders AIs useless, so here I am.
I am considered stage 4 because of significant skin involvement (mets/solid tumor) above my left breast and mets to sternum (skin mets 2014, so "technically" stage 4 since then).
I am catching up on reading about Xeloda on this huge thread (is there an app, or is this just browser based?) but I wanted to say hello to my fellow warriors. I'm glad that (so far) Xeloda wasn't worth the anxiety I had over it.
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@horsegirl1 Thank you for sharing. Gosh you've really been through the mill. I was anxious about Xeloda at first, but I got over it. I take 2000mg 2X a day, 14/7. It doesn't cause nausea for me as long as I take it after food. I do get occasional diarrhea, and I suppose some constipation but I tend to ignore that and eventually it works itself out, literally. 😆 As others have said in here recently and you probably already read that, but limit your folate intake. And keep your hands and feet moisturized. I use Udderly Smooth hand and body cream. I hope you have a good experience with Xeloda.
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@horsegirl1 Welcome back! I am sorry that you have gone through so much! There is no specific app that I know of. Just ask questions and we will answer!
Wow, 4,000 a day is really high. My onc won't give anyone over 3,000 a day. So you might be able to cut that back if you have problems. I am at 2,500 a day at 7/7, which has kept me NED for over 7 years.
I have been constipated for about 10 years-3 years on Kadcyla and now on Xeloda. I take a dose of Miralax and 200 mg of stool softeners every evening.
And to limit the high-folate foods makes a huge difference. I use Aquaphor on my feet night and day and Gold Bond diabetic cream on my hands.
Denise
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