All about Xeloda
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Lynn - Praying for good results on your PET scan!
Grant.
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Thanks for your kind wishes! Just finally found the report online, and all looks good to my non-professional eyes:
Widely disseminated sclerotic bone lesions compatible with metastases again do not demonstrate abnormal glucose avidity.
HOORAY...another 3 months to breathe! I've been on Xeloda successfully for 16 mo! Hang in there, folks....!
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Yay Joyner! good news!
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Awesome news Lynn!
Grant
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Great news JoynerL !
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Terrific news!!!
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Great to hear Joyner! Glad for you.
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JoynerL...16 months! That gives me hope as I start Day 1, cycle 1.
S
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Question for you guys:
How do you handle the morning Xeloda dose when getting scans or biopsies that require NPO prior to the procedure? I have a liver bx coming up, scheduled in the morning and since I am new, I was unsure. I will check with my MO, too. I always appreciate insights from experienced users.
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My onc has always told me that I could take my xeloda with water in the morning before my scan but nothing to eat. I do not take my vitamins and supplements, however. I typically have my scan at 9 or 9:30, and since we get up very early, I typically take the xeloda a bit earlier than my normal 7:30 a.m. pill time. There's a four hour window before the scan window, so sometimes it's possible to take it before the 4-Hour window, anyway.
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When I have to have fasting bloodwork, I just skip the morning pill, and add it on to the end of the cycle. My specialty pharmacist agreed with me that it really doesn't make a difference in the scheme of things.
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Thank you JoynerL and Denny123. I called and was told to hold the morning 7 am dose and add to the end. But if I can take it with just water and not get sick, that would better if anything, psychologically.
I am worried that I started directly coming off Ibrance with only 2 day break, instead of typical 7 days..which is used for the bone marrow to get platelets, wbcs and rbcs increased. My poor bone marrow..
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All of these details can be so very stressful. I remember that early on, when I had to get a kidney stent and they didn't want me to drink anything because of the anesthesia, my oncologist been said not to worry about it. He said that xeloda effectiveness wasn't that affected by timing. He told me to skip that dose. I don't think that I did skip it, though. I get nervous about fooling with the schedule.
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In my 18+ years of chemo I have had to delay several of them for various reasons. And it has never been crucial, even when I had to delay for one or two weeks.
I think that with Xeloda, if you had to skip a whole week, you just can't take that dose right after the next dose. One pill won't make a difference, really.
What about the ladies who throw up a dose? That dose is lost.
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Okay..need shoe advice. Looked thru this thread and could't find suggestions.
My MO said I couldn't wear from Doggs Z strap sandals ( have them in many colors..). I love them.
So I need hot weather and cold weather shoe advice. Like what to do your wear when walking the beach?
Please forgive me if you guys have said this over and over..I swear I searched.
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JoynerL, I noticed you went directly to Xeloda from I/L like I am doing. Was there a particular reason? I had always thought I would go directly to Faslodex and Verzenio, but the multiple liver mets changed that decision.
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Sandi---I love Sketchers with Memory Foam, in sneakers and even dressy flats.
My sandals also have Memory Foam and I prefer the ones with Velcro straps since I can adjust them better. And I have different brands of those.
I find a style that I like on the Skechers site and then sometimes I find the same thing on eBay and they are cheaper. Otherwise, when the Skechers site has sales, those prices are also good.
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Today is my 71st Birthday and I celebrated by going for my chemo....my only trip out of my house for 3 weeks.
They were more cautious today than they were 3 weeks ago and I am happy about that.
I wore my own mask into the center, they gave me a plastic bag to put it into, and gave me their own mask. The nurse took my temp and asked me to wash my hands.
Everyone there, staff, nurses, and patients all wore masks.
I did get many "air hugs" since I have been going there for 18 years of chemo and am very well-known. It was a different kind of birthday, to be sure, but I did feel safer.
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(cross posted in liver mets thread) Hi everyone. Hope that you all are managing OK in this bizarre new world we are living in. I am hoping that some of you may be able to shed some light or share experiences with me.
I am on xeloda on clinical trial (standard of care arm). Last week my labs showed my bili elevated at the end of my second cycle of xeloda. We reran labs this week, at the end of my week off and bili was even more elevated. My CT shows bones stable and only mild progression in the liver. Doctors are concerned that the bili levels are due to disease blocking small bile ducts (as the CT did not show a bile duct obstruction or other explanation for the elevated bili). Curious have others have experienced this with xeloda, even at the end of their week off?
NicoleRod - I seem to remember you had posted about elevated bili levels on xeloda, but perhaps I am mistaken.
Thanks in advance.
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Denny123, my new project today is Sketchers website. Thank you. And Happy Birthday!
Thrivingmana..I just started, but will be monitoring my tbil. Sorry that this is a concern for you.
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thriving, I don't have knowledge on the billi subject by hope you get answers/advice soon.
Sandi, not sure why your doctor vetoes your choice of footwear? I wear sneakers that have a thicker sole, like the Skechers that Denny mentions. I also always use insoles with them, specifically Powerstep insoles. I've used them for at least a decade, tried others but none ever compared to the Powerstep. To go to the pool, I wear Clark flip flops. I could never walk very long distances in them, so they are definitely for casual wear. Too bad because my feet are adorable but I don't get to show them off too often. I really need the thick soled sneakers along with insoles. This came about before I was diagnosed with mbc. . Went to a wedding last October, wore low healed dress shoes, no insoles in those pretty things, danced a lot and my body ached for three or four days after that. Worth it, tho!
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Denny, Happy Birthday!!!!🎂🎈🎉
Glad to hear your center is being so cautious. I went for blood work yesterday at Express Care and had my temp taken in the breezeway before I could enter the building. I wore gloves and a mask. The receptionist, also in a mask, and I talked about how we feel like we’re in an episode of the Twilight Zone. Lol! But necessary to take these measures!
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Happy Birthday, Denny!!! You are a gift to everyone on this thread!
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My feet have been arthritic for a number of years and they hate almost all shoes. I was so happy when I discovered Skechers with the padded insoles!!! In addition they are really comfortable when my feet are mildly inflamed from the xeloda.
On another subject, my bilirubin was elevated once in January - I can't remember by how much , I would have to go back and check my portal- but my MO had me stop taking the xeloda for two weeks in case of toxcity, then checked my blood work again and my levels were fine. No problems since then.
All the best to everyone,
Katty
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Happy birthday Denny !
Best wishes to all, stay safe.
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Thriving..yes...I did. If I do blood work on the "ON" week of Xeloda my bilirubin is high. High bilirubin per my MO can mean there is a blockage as you mentioned above...but I also had a scan last time mine was high and there was no blockage and I had no pain. Mine was high again 2 weeks go because I did the bloodwork on the "on" week. I run a little high normally anyway and now my MO confirmed that I probably do have Gilberts syndrome (a high bilirubin) because she ran a special test and it showed that, yes I most definitely have Gilberts syn. My bilirubin normally will run any where from 1.4 - 1.9.... but usually 1.4 or 1.5...the Xeloda, although it is normally processed in kidney does seem to effect my bilirubin number.
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Sandi, a couple of things:
Have you tried wearing your Dawgs, since you love them? If your feet aren't bad, you may be able to wear them. I pretty much wear my regular flat shoes, but I've given up anything with heels (and pretty!). Although....I did buy one pair of Aerex snake wedges, and so far, I can wear them. Trial and error. Maybe it's too cold where you are...can't remember. Pretty warm here now.
On going from Ibrance/Faslodex to Xeloda: When I had progression on Ibrance/Fas, I went to Sloan-Kettering for a second opinion. The oncologist there, Rachel Sanford, suggested one of three options for my situation: Xeloda, AA (Aromasin and Afinitor), or Verzenio. Her recommendation was Xeloda, so that's what I did. I seem to recall that she mentioned more side effects with the Verzenio, but I'm not clear in my recollection.
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Thanks Joyner for all of that info. I think I will try my Dawgs Z strap sandals and watch for foot damage. The bottom is similar to Crocs and I think I read here that someone wears them with no issue.
I always thought I would go to Fas/verzenio next. But when there is viceral crisis, you hit it hard. At first, my MO said we could switch when stable and hold Xeloda for later, but now she is saying I might stay on if it is working. This happened so quickly, there was no time for 2nd opinion and no time to refer to my clinical trial notes. Liver Bx this week so confirm hormonal markers and F1 plus PK3 and PDL1...get as much info as possible.
Plts were low at 57K at the progression news, only 2 days off Ibrance before starting X. I need to call to see plts need rechecking prior to liver bx. INR ok.
If Xeloda fails..we didn't get that far in the conversation. I rarely, almost never eat sweets, but today I had biscotti and macaroons. Now I feel guilty for indulging.
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Thanks everyone for the birthday wishes! What a weird birthday it was!
I guess that I have liver damage since my liver was so involved with mets in 2004 (mets too numerous to count), but a low bili was never mentioned. So I am lucky in that respect.
Last year my toenails were too ugly to wear sandals, but now that my loose big toenails came off, the new nail underneath, although very short....looks normal! Hopefully they will stay that way so I can wear my sandals. I can't imagine wearing anything without a memory foam sole though.
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nicolerod - thanks for sharing your story/experience with bili and xeloda. I couldn't remember all the pieces and appreciate you summarizing for me!
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