All about Xeloda
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@dawn68 My red cells are always at the lowest possible without falling off the chart. My foot peeling was much better when I used Aquaphor and silicone socks at night. But the socks kept stretching and it was hard to make my multiple bathroom trips. So I went back to Aquaphor and socks. But now my feet are way too dry and I just ordered new silicone socks on eBay. when I sued the silicone socks, they hardly peeled at all. So just be aware that they might get worse.
@dulcea Udderly smooth never worked very well for me. But I am glad that it works for you! I am always very tired, but my nurses just tell me that it is because I have been on chemo for almost 23 years. Oh well
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@soldanella Glad that you are doing better, but that still is a very high dose. If I have light liver pains, I attribute it to my fatty liver, which I was never nefore told to worry about. My diet is so darned restricted now, but I guess that I have to cut back on my sweets even farther.
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@denny123 Thanks for your encouragement. Since yesterday I decided to do without Primperan and Zofran and even if I still have a smear I think it's better and I sleep less. I see my MO today and will talk to him again about the dosage. I hope it will be better for your feet with the silicone socks. If I follow your advice of junk food (which works quite well) I think I will continue the sweets. ;-)
@dulcea Congratulations on your 3rd cycle. Personally, I don't like being tired and having my head in a hole at all. I will see today if my blood test already shows a decrease in red blood cell. It's true that my M/F are wonderfully sweet, I also discover that I could have taken care of them earlier! This is a positive point in this whole adventure! I remember that you started the X with a high dose, what is it now, and are you still taking it 14/7?
@ces68 : I am happy for you that your stomach pain has calmed down and I hope it goes well for your next cycles. Thanks for the idea of the banana in the morning, I was afraid that it would not be enough but I did it yesterday and this morning and everything is fine. I have less nausea and my stomach is less heavy too.
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@denny123 23 years? Wow! I know seven of it is Xeloda, but what other treatments have you had? That is amazing. You are very lucky.
@soldanella I am taking 3,000 mg per day on the 14/7 schedule. My local MO wanted to start me at 4,500 or something close to that but my second opinion doctor intervened and suggested 3,000 to start and she referenced studies and a lot of real life data. Thank goodness! How did your blood work turn out?
I seem to be experiencing another side effect: constipation. Great. It’s listed as a side effect so I’m assuming it’s from X. It’s better than D though which almost killed me a few times on previous treatments. Lots of remedies out there for C.
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Just putting in a plug for Xeloda. Since I started it in April my tumor markers have plummeted!
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@dulcea I have had A/C, Taxotere, Gemzar with Herceptin, then Herceptin for 9 years of NED. Aromacin, Kadcyla, Faslodex, clinical trial of Poziotinib, and now 7 years of Xeloda with Herceptin. CT scan tomorrow.
I have had constipation with both Kadcyla and Xeloda. Every evening I take a dose of Miralax and 250 mg of stool softeners. i agree that C is much better than D. 4500 a day is insanity.
@AJ yay for you!
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@dulcea : Thanks for the info. 4500mg/day wow.... I'm at 3600mg/day. My MO tells me that we are not reducing the dosage for the moment, as long as the SE does not appear. My blood test findings are normal for white and red blood cells; and good news 2 out of 4 liver enzymes have return to normal. The gamma GT and PAL are still very high but they are on a downward curve, whereas they were increasing sharply after the discontinuation of Truqap.
I'm also a little constipated since X, I take a teaspoon of Psyllium. It must be taken away from the X, at least 2 hours before or after taking it so as not to disturb the absorption of the X. So I take it in the early afternoon.
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@AJ Excellent news. It really encourages me.
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@denny123 I'm sending you lots of positive vibes for your scan. If I may say so: You are an example of tenacity.
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Ladies, thanks for letting me know that the C I’m having is “normal” with X. I will start a daily regiment of Miralax or something.
@denny123 I’m curious why you have only had chemotherapy as treatments when there are so many out there. Or are you saving those for later? Please feel free not to answer, but I am always curious about people”s treatments. How often do you get scans at this point? Yearly or so? Best wishes for tomorrow! I hope you keep up the long running streak you have going!
@soldanella I have never heard of the those two blood tests you referenced. I had to go look them up. I have never had those tests but they look quite helpful especially the PAL. I wonder why it’s not common here.
@AJ great news and thanks for sharing! Posts like that give me hope.
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@soldanella Thanks! I hope to see the results online before I see my onc next Wed. Not looking forward to drinking the chalky stuff, though.
@dulcea The new treatments were still being researched when I was dx'd. My only choice was hard chemo and I am now too far along in my treatments to qualify for the newer ones. I did have Herceptin for 9 months of NED after my liver was cleared (before my chest node recurrence). I have CT scans every 3-4 months. Please feel free to ask any questions that you have! I am PR- and since you are PR+, that can also make a difference. And so far, I don't have bone mets.
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Had my CT scan today and just saw the results online already. All is good! Still NED.
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Hi, I am new to this site…I've been reading your posts for last couple days…I finally heard from the specialty pharmacy today and won't be receiving the Xeloda until next Tuesday the 14th…I was on Kisqali/Letrozole for a year…had progression and they changed me to Truqap/Fulvestrant in June…at the end of December found out I had progression again. So now on to Xeloda…I've been reading about SE and doses in your discussions…my dose is 4000 mg a day 14/7…it seems high so talked to the pharmacist …he did his calculations and said it is on the high side but still in the parameters. I tend to have Eczema so very afraid of having HFS. I got a pedicure to make sure my feet are in good condition and ordered some of the creams I read on this site. I was orginally diagnosed with ILC Stage3, grade 2 in 3/2018…went thru ACT, double mastectomy, 36 radiation treatments, diep flap reconstruction. I was diagnosed with Mets to my bones only…but ALL OVER all my bones 3/2023… Any help will be much appreciated. Thank you
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Hey ladies I still read along even though I haven't posted much here. Congrats to @AJ @denny123 for good scans! Xeloda has been good to me so far too just had a good PET scan too! Wanted to post positive feedback for all who may be starting. Best wishes to all who are new to Xeloda, I hope it is successful for you.
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Thank you for your encouraging words. It's so good to read you.
@thailandais
: Welcome among us but still sorry that you have to join us.
I started Xeloda 2 weeks ago and despite some stomach upsets it's going pretty well.
Concerning your eczema: I am a person who easily gets allergies on treatments and I also have Psoriasis and already after 14 days my patches have greatly diminished.
I hope you have a long journey under Xeloda.1 -
@denny123 @cookie54 Congrats! Another few months of not worrying! I love being in that place.
@thairpist Welcome. It's not fair that we have gone through all those treatments for the initial cancer and then it comes back again. But here we are.
You may have read that my MO originally wanted me on 4,000+ of Xeloda but thankfully I have a second opinion doctor at a teaching hospital who helped me out. She explained that the drug companies do the studies for the highest tolerable dose and not the least effective dose. So your doctor is just following the pamphlet that comes with the medication by prescribing by body weight. My SO MO explained that life experience and some other studies have taught her that those high doses are not necessary. I can't reference the studies right now (running to work) but you might be able to do some research and find them to show your doctor. Remember, you are part of your treatment team. You can do what you want.
I am taking 3,000/day 14/7 and so far, it is very tolerable. I also experience psoriasis and other skin issues and it does not seem bothered by Xeloda. I have just started having constipation on my 3rd round, so maybe having some Metamucil or something on hand too is a good idea.
Good luck and I hope you have an easy and long journey on Xeloda.
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@soldanella thank you for the encouragement…I hope to be on Xeloda for a long time! My husband worries about me way more than I do and he gets so upset when I have a treatment change. : (
@dulcea thank you for the info…Thank you I will try to find the study you are talking about!
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@thairpist Welcome and we hope to be able to help you. Remember to limit your high-folic foods with Xeloda. You can eat normal portions, but I ate huge spinach salads and suffered a lot from that. And 4,000 is very high. My onc won't give anyone more than 3,000.
I am on 2,500 at 7/7, and have been on Xeloda for 7 years.
My pharmacist told me not to take Metamucil and instead take Miralax. I take a dose of Miralax and 250 mg of stool softeners every evening. But some ladies get diarrhea, so wait to see how it affects you. Be sure to take the pills a half hour after eating and never on an empty stomach.
I don't have nausea, luckily.
@cookie54 and @dulcea and @soldanella . Thanks! Just had my echo this morning, since I have been on Heceptin for 22 years. I am now happy to stay inside until Monday. I am in snowy PA and can't wait until spring!
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Hi all, just checking in. After stopping round 5 of Xeloda early and taking a break due to severe stomach pain after eating, I just breezed through round 6… maybe my body just needed a reset. I've had no stomach pain and my feet even stopped peeling …. no hand or foot pain through the last round. They are very dry but that is about it. I'm continuing to use the cream with urea morning & night with thick socks though. Starting round 7 this coming Wednesday so we'll see how that goes.
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@dawn68 That is great news about your stomach pain and peeling skin.
Can I ask how long the break was?
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Has anyone come across this great book? It's free to download as a PDF.
Written by a woman with MBC who is no longer with us, but this is SO informative. There is also a link to a paper/discussion about the overdosing of these drugs that we discussed before. It also discusses unconventional ideas like going back on Verzenio after failure on previous Ibrance/CDK4/6 inhibitor and chemo with some pretty good results. It's interesting!
Thought I'd share this for a little "light" reading.
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Hello Dulcea, I have indeed read on Xeloda's old threads that this guide is very informative and updated regularly until 2023.
He has helped many people in stage 4. I'll download it and see what it's all about.Thank you for the info.I hope all goes well for you under Xeloda.
I started my 2nd cycle, a lot of fatigue, no H&F problem, almost no nausea anymore.
I'm able to move especially in the morning. We are in the mountains and I manage to ski for 2 hours in the morning. Nap at lunchtime and I sleep like a baby 😉
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@soldanella I am so jealous! Skiing in the mountains! I do like to hike the mountains but my back issues keep me from getting too far up those trails. I am thankful I live near the White Mountains. That is great that you are still so active. Keep it up! That's great you aren't experiencing any more nausea. That has to be the worst side effect. I know it was for me on Verzenio.
I have all my energy in the morning too, but do notice more fatigue. If I sit down, I can't get up again. I just keep going until bedtime. I have acquired really dry eyes these past few weeks, which means they are tearing up all the time. I'm not sure if it's from X or just old lady eyes. The ophthalmologist told me to just use lubricating drops but that just makes things worse with trying to see. Does anyone else experience this? Other than that, a little constipation which is easily managed. Scan next month so fingers are crossed.
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@dulcea : I also have red and watery eyes from Xeloda and I should put some drops but I don't have the patience!
I don't know how you manage to stay on your feet all day...
I love hiking (here in Switzerland) but my 9 hours of walking in 2021 were reduced to 2 hours max this past year.1 -
@soldanella How lucky you are to be able to ski! I was in the ski club in high school….back in the stone ages.
@dulcea I have had dry eyes for many years and my eye doctor prescribes Restasis to be used morning and evening. Otherwise I use Systane or Theratears.
And Systane makes a great nighttime eye gel that really helps when your eyes are extremely dry. Also be sure to hydrate a lot.
I have post-prandial hypotension, which means that after I eat, my BP drops very low. I have had this for years and finally figured it out. So now I eat smaller meals every 3 hours and it does help with the fatigue.
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Dulcea - I think the person who wrote the book you are talking about is Anne Loeser. She used to be on here as "BestBird", if I'm thinking of the right person/book. I have a copy of her book, but haven't looked at it for awhile. I absolutely cannot believe she did all she did, especially writing a book, while she had stage 4 breast cancer. Amazing!
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@threetree, yes! That is the author! Amazing, detailed information. I don't think I could have read it when I was first diagnosed due to all those strange new vocabulary words. But now, it's interesting reading. I'll see if I can search her user name.
@denny123 that is crazy! Why does food make your blood pressure lower? I eat a lot during the day too. I just like food. MOre small meals help with my blood sugar too. Yes, I use the systane. I am allergic to restasis, unfortunately. I have a humidifier going in my bedroom too. I will be looking forward to spring when there is more humidity in the house and in the air outside. I think the cold bothers them too.
@soldanella, I go to bed VERY early, so it's not really "all day". I guess I take my nap before I to go sleep for the night. LOL.
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@dulcea my break from Xeloda was about 4 weeks. I am now on round 7 and the stomach pain has not come back nor has the foot pain from HFS yet… just dryness. It is almost like everything reset and side effects are similar to what they were on round 1 & 2.
My eyes also get dry and tear up really easily but I wasn't sure if it was the Xeloda or not.. seems like it is a common problem.
I am the same as @dulcea with the fatigue. I do have energy in the morning so most days I go all day and don't stop until dinner because if I do stop I can't get going again. After dinner hubby & kids clean up as I am too tired to move 😊.
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