All about Xeloda
Comments
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Denny - I was looking forward to your comment as it brightened my day!! Thank you!
Grant.
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Thanks to those of you who called out the post by hray. I see she’s got the message and deleted all her posts on this thread. Her comments, tho not intentionally trying to cause harm, were a perfect example of why there's a “stage iv only” section in on the forum; often those with lesser stage bc simply do not comprehend our experience.
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Thank you all for the encouragement and support. I hope the lesser stages never have to understand from their own experience what it's like to be stage IV. But I also appreciate the feeling of safety I get from being in the MBC only forums.
It is a lesson for me, as well, to understand that I am not texting a friend, but posting for strangers who are all in different leaky boats, and who may be feeling the strain, and I need to be aware of that. (I had a second panic attack this morning after listening to a phone message from my landlord. And I hardly ever panic.)
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I’m on 2000 mg day - 2 weeks on, one off. My diarrhea is quite bad even with immodea. im thinking I have to use some kind of depends at night. It happens with no warning.
I take one every morning as a preventative and at night but I’m always nervous. Any suggestions?0 -
I did not mean any harm to anyone or any thoughtlessness. I should have paid more attention but I just saw a thread on xeloda and was never told that that’s a drug for stage 4 so I didn’t think to look. I’m sorry I came to this thread with questions and comments. They were never meant to be from an insensitive place. I’ll leave this thread completely Maybe there is another thread for
Xeloda users.
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Hi hray. I'm not sorry you came here, and anyone can make a mistake, or write something that lands badly.
If there is no thread for Xeloda in the other forums, you could start a new thread that will reach others in your same stage, and help them. It is awful that you are dealing with this at such a young age. I hope the best for you.
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thank you so much ninetwelve
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Hray, I know you were well intentioned and meant no harm. There is a section on the forum for “Stage IV/Metastatic Breast Cancer, Open To All to Contribute”. Here is the link:
https://community.breastcancer.org/forum/163
You could post your questions in that section and ask for insight there by beginning a new thread. If you choose that route, it would be very helpful to include in your post that you are not stage iv so others can see the whole picture of what you’re experiencing. I do wish you well.
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Thanks Grant!
I had my Herceptin IV today and my cubicle buddy was a guy with lung cancer who was getting his first round of chemo. He was so afraid, but when I told him that I have been getting chemo for over 19 years, he sure did feel better!! He must have thanked me about 20 times for the encouragement.
Since I have been a volunteer counselor for the Reach to Recovery program of the ACS for 19 years, I have learned a lot about how to converse with patients. In fact, I have an on-line appt in 15 minutes.
It makes me crazy how the ladies on some of the Facebook forums tell everyone that our chemo is poison. Granted that it is poison to the cancer, but that only scares the newbies more. It is important to be encouraging, I think.
Ninetwelve....I hope that your landlord situation is okay!
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Hi Everyone. I've been off this thread since last December and am checking back in for a visit. Currently still a long hauler since BCMets diagnosis in liver in 2002, NED at the moment but CA-15 tumor markers out of normal range. I am celebrating a year since starting Xeloda and I feel like an old timer at this. I was wondering how long people usually take Xeloda and glad to see someone posted they have been on it for 3 years!! I wonder why Xeloda stops working and what I can do to prolong it's use.
I Started at 3000 14/7 and then reduced to 2500 after an awful week with foot blisters- bad enough to also take an extra week off and then came right back on the reduced dosage and with a better understanding of what not to do..No more 4 hour walking visits to the zoo. I highly recommend Dearfoam slippers, Darcy Microfiber Velour Clogs are the best. They have a thick rubber sole so I have even worn them food shopping and walking my dog when I want/need to pamper my feet. I treat my hands and feet with respect now. No one cream fits my need- sometimes it's cooling,soothing/greasy Aquafor (I'm on my 2nd 14 oz jar) sometimes the Urea products like Atrac-tain (10%), or Udderley Smooth (Pink,not red version, with 20%Urea) for the less greasy mood. And I do it often if needed. along with toe coverings so a sensitive toe doesn't have to touch it's neighbor. Amazon is my friend with every new product I might need (including my dearfoam slippers-I got smokey purple this time).
I do want to know if anyone is having a problem with their eyes? I think Xeloda has made me susceptible to allergies which have caused many eye irritations (burning, redness, tears, gluey stuff sometimes pain) for the last 10 months. I now take daily Claritin, use Zaditor (anti-histamine eye drops) and Blink individual eye drops and an antibiotic ointment when needed. Anyone else having his issue? My ophthalmologist emails me back to just stay on the ointment longer- I don't think that's the answer.
Enjoy the new season of spring flowers and wasn't the "pink moon" beautiful yesterday? And my mantra when I have trouble falling asleep is "Gratitude", remembering what is being good right now instead of all the anxiety out in the world right now. NINA
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Nina, what good advice for all Xeloda-users! Glad you're doing well, and I hope that the markers are a blip.
I, too, wanted to know people's longevity on Xeloda. I'm at 28 months now, and so far, so good....
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Nina, yowza! You truly are an exceptional responder to treatment, living with mbc since 2002!!! What an inspiration you are! Really,I love hearing your story. I will look in to the slippers you recommend.
I’ve been on Xeloda a year. My oncologist doesn’t quantify how long it could work; her approach is to say, “I’ve had patients on Xeloda for years!” and she positively emphasizes “years”.
Sorry to hear of your eye issues. I don't have that with Xeloda, and am wondering if you should get a second opinion from another doctor. Ten months seems a long time to be dealing with it.
Denny, that's terrific you were able to calm the fears of a first-time chemo patient. I would love to learn more of your tips on how to talk to patients. Any time I can ease someone's anxiety through conversation, I'm up for it.
I, too, hate the narrative some people try to push that chemo is poison. I've shared before on the forum, back in the 1970s, my 18 year old brother was diagnosed with stage iv cancer spread through his body, had chemo, surgery and radiation and survives to this day living a full life! No amount of curcurmin, green tea or alfalfa sprouts was going to produce those kinds of results. I know others whose cancer was kicked to the curb by chemo who would no doubt have had a more grim outcome without it. Some of my in-laws are kind of snobbish about certain conventional medical treatments but I won't be shamed for my belief in its benefits or made to feel I'm “doing it wrong."
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Nina what an inspiration you are, as I sit having my chemo as I’m typing, to know there is hope to live many years in stage 4 is such a gift. I needed to read that today. 🙏 thank you
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hray I’m so sorry you are dealing w cancer so young. I was diagnosed at 43 and felt that was young. Praying you will be just fine and beat this!!!!! (((Hugs))
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Nina, thank you for your positive post. I have successfully been on Xeloda for 10 months with 6 of them NEAD but have just started showing slight progression. My MO wants an MRI and CT to better determine what is happening in my abdomen and spine. I do have some eye issues as my vision is getting blurry especially by the end of the day. I have scheduled an eye appointment to see what I can do. So far I only take Systane eye drops as they feel very dry at times.
Joyner, so glad to read you are still doing well on Xeloda. Any trips planned this summer?
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Hi, IntoLight... good luck with those scans! You're nice to remember the boat trips! We have a different boat now, and we're hoping to take her from Virginia up to Lake Champlain and even into Canada, but if Canada remains closed, we won't get past Vermont! Hoping for more adventures on the high seas! It was so much fun doing that journal a couple of summers ago and sharing it with everyone on the ibrance string! Sending hugs -
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Hi All, great to hear good news and longevity. First scan on Xeloda results today 4 cycles in.
Stable!No signs of progression and some evidence of healing in bone met on my sternum. Delighted as we’ve also just managed to get the dosage to a point where I can cope.
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Hi All, great to hear good news and longevity. First scan on Xeloda results today 4 cycles in.
Stable!No signs of progression and some evidence of healing in bone met on my sternum. Delighted as we’ve also just managed to get the dosage to a point where I can cope.
IntoLight I do hope there’s a plan for you to knock the thing back soon
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Nina, I've been on xeloda for over 10 months now and have had eye problems the whole time. Itching, burning and watering big time. They water so bad, I have 2 creeks running down my face.......my husband calls me drippy and everyone thinks I’m crying At night they dry out completely and my eyelids become stuck to my eye (not with eye gunk though) it takes me 5 minutes of eye drops and blinking before I can see. Nobody has yet come up with a with anything to stop it
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Mis1- Do you have any allergies? Is it possible that xeloda has made you susceptible to Allergies and that your drippy eyes are the result? I take daily Claritin for allergies (non-prescription) and Zaditor eye drops twice a day (non-prescription) doc said it was okay. I would suggest you try both medications to see if it works unless your doc thinks otherwise. Also I use a warm compress on eyes in the morning to unglue them. You might check with a doctor to eliminate other causes such as an infection. I have an antibiotic ointment from my doc which I have used a few times for two weeks at a time. For me it's a matter of trying different things at different times. Hope you find something that works. I was thinking of stronger allergy medicine, but one made me too drowsy.
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Nina, I have been taking Claritin for the last 6 months as well as 2 different eye drops recommended by the pharmacist at the cancer agency. I haven't actually seen an optometrist yet because of covid but I am convinced it's xeloda causing it even if nobody wants to admit it's a side effect. I don't think they are infected because there is no gunk build up of any kind
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Nina, I agree with you that it might be the Xeloda as I have similar issues with my eyes, but I am going to wait and see if my onc changes my meds with this last progression before I do anything else. I do like Nina's suggestions and I probably have been a little too lax with the drops and care. Your post and questions came at the right time for me as I have been getting a little worried about my vision. This gives me lots to think about.
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Nina- I’ve been on Xeloda for 13 months will have another PET in a few weeks.
I do have eye issues also. I take Zyrtec daily and eyes get super dry. I tried to wear my soft contacts about 6 months ago and they burned and my eye got very red and got pus- was covid times and they Gave me antibiotic eye drops over the phone- I didn’t end up using them. I am going to see my optometrist soon. I don’t think I will try my contacts again.
My feet are pretty good with 2000mg per day 7/7 schedule and Incan still take long walks in cushy shoes.
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Hi Nina! Another long-timer like me! My dry eyes started 7 years ago when I was on Kadcyla and X causes a continuation.
I use Restasis twice a day and Systane through the day. I hate the "stuck-together" eyelids during the night. I do have allergies, but it is more the fact that our eyes are so dry.
I am still on an X break since I was bad and ate healthy salads for lunch. They were too high in Folic Acid and my toes were horrible. They are clearing up since I am watching my Folic Acid and have been off X for almost 2 weeks.
I have to show my onc my feet next Friday when I go in for my Herceptin IV, but will ask if I can go back on X the end of May, after my second Covid Vaccine.
I finallllly got my first Pfizer vaccine yesterday!!! I had a hard time finding a place that would shoot my butt, since I have bilateral lymphedema. And the hospital through which I have my health insurance (UPMC) did it.
Divine-thanks. I had a lot of training with the ACS. But it is really just common sense. My longevity on chemo certainly helps. We just need to tell the patients what will calm them down and I agree with you about not trying to scare them. I hate when people insist that we are poisoning ourselves. (But it is fine to eat some weed that supposedly cured some made-up relative from cancer).
Once again....if you ladies have infected toenails, burning and itching....check out the amount of Folic Acid in you foods. I also just take my Centrum vitamins every other day.
This is a good site...FolicAcidNow.net. Basically everything healthy is bad for us. Seriously!!
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Hello. I completed two cycles of Xeloda and had severe diarrhea for two two weeks. Ended up in the hospital for 12 days - just got home Wednesday. I have an appointment with my oncologist on Wednesday to figure out the next step. Wondering if anyone has had similar results and what was done about it? I was on Taxotere before Xeloda with similar experience with diarrhea. It's hard to eat and drink enough to replenish what's going on but I am working hard on that. Any advise is appreciated.
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ohh Wandering, the big D is a total nightmare... dose reduction for me has helped - now down to 2600mg per day over 10 days in a 21 day cycle having started at 3600 over 14 days ( I also was having 10-12 days running with def more coming out than going in and the loperamide just makes me nauseous....so don’t know which was worse). Now it’s about 4 terrible days always on the week off and manageable, but not disappeared, the rest of the time. Drinks with electrolytes might help replace what you lose. Is there any pattern? I found worse in the mornings and last thing at night before bed was a pattern for me. At least when you identify a pattern you can plan around it a bit. My NP said to obviously not eat things which make you go...high fibre, too spicy etc. But that bread, rice and bananas can help slow down the process.
You clearly know how serious this can be if you’ve ended up in hospital!
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Wandering..hopefully, your next step is dose reduction! Don't give up on this chemo.
i started at 3300mg/dsy and have been 2150mg for almost a year. Hand Foot syndrome (mainly foot) was a big issue, plus the D.
It appears most of us get dose reduced to a tolerable level.
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Thanks Denny for the Folic Acid warning- now I know you mentioned it before but why does it negatively interact with Xeloda, especially on feet? I don't take vitamins, except for Vitamin D, so if I have to change my diet I will if it means better feet.
I'm impressed that your Doc looks at your feet and knows what are "okay" X toes and which ones are not okay. I make the judgement myself -can I walk on my feet for at least 30 min. either in shoes or slippers - or if I see a possible infection I call it in. Since I don't go to IV chemo I have way less interaction with the medical staff. Right now I'm losing one of my toe nails (big toe) and don't know whether to go in or wait for it to come off on its own (there's a new one underneath).
I'll look into Restasis for my eyes but will have to check to see if I can take it with Zaditor, my anti-histamine eye drops. I think it's time to make another appointment with my ophthalmologist. I see you live in my area and glad to hear of your volunteer work with ACS.
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Nina! You are in Oakland PA? I thought you were in CA. I live 35 miles from Pittsburgh....in Greensburg.
My onc was horrified at my burgundy feet, but they are always that way. Although they are finally back to pink since I have been off X for over 2 weeks.
No idea why X is bothered by Folic Acid, but we have to avoid blood oranges too. Those are the ones used in marmalade.
I lost my big toenails twice and they are very loose once again. I just cut them back carefully as the new nail grows in.
What is totally weird to me is that my feet get itchy in the evening....so I sit here at my computer with my feet in Ice slippers. Then I wear my ice socks to bed.
I have retired my gel socks for awhile.
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Hi All,
I am starting Xeloda next week after a short, unsuccessful Piqray run. I am most concerned about the HFS. I am a long time athlete and have dogs I walk 4-5 miles a day. Are my dog walking days over?
If anyone can share the “hacks” to deal with the side effects, I would be grateful for a list.
Best,Stace
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