All about Xeloda

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  • KBL
    KBL Member Posts: 2,521
    edited December 2021

    Wandering, I love it. Thank you for sharing.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited December 2021

    Thanks, Wandering. Too true.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2021

    Does anyone know how to contact the admins? I used to be able to. I keep getting a virus warning on this site for "Blacklist". My Avast is blocking it, but it is a concern.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2021

    Nevveeermind-I found it-I had to send a PM and chose "moderator" to whom to send it.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2021

    So that was weird-I kept getting a virus threat and reported it to the moderators. They didn't see it though. My Avast kept blocking it. It isn't happening anymore for me.

    I watched my 9-year-old grandson 2 days ago (Tuesday) and today he tested positive for Covid. He was not vaccinated. He was coughing a bit when he was here, but since he has allergies, that is common. Apparently, when he got home, he started to cough constantly. My daughter had him tested yesterday and his rapid test was negative. But his PCR came back today and is positive. He is coughing less and a little better.

    My daughter, who is a home health psychology nurse, fully vaccinated & had the booster has had a lot of nausea and went for a test today.

    There are no at-home tests available here and I have a drive-thru test scheduled for Jan. 5. Trying not to panic here.....

    I went for my Herceptin IV yesterday and feel horrible that I was exposed and didn't know it. I called the cfhemo center immediately to report it.

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  • KBL
    KBL Member Posts: 2,521
    edited December 2021

    Denny123, I’m so sorry you were exposed. Hopefully you will test negative. I can understand you feeling bad about going for treatment, but you couldn’t have known. I hope your grandson heals quickly

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited December 2021

    Denny, I can’t remember if you’ve been able to get the booster shot. I hope your grandson makes a quick recovery and that you and your daughter manage to avoid getting covid.


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  • Denny123
    Denny123 Member Posts: 1,886
    edited December 2021

    Yes, I did get both vaccines and the booster. I had to go to the one hospital that would shoot my butt. All 3 were Pfizer.

    My grandson is better and my daughter seems to have flu symptoms. She should get her PCR back soon.

    I feel like I am getting a cold, but my Herceptin & Xeloda often makes me feel this way.

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  • WANDERING
    WANDERING Member Posts: 197
    edited January 2022

    Hi all. Wishing everyone a better 2022. Between our government, being in the ER 3 times and the hospital twice, 2021 was not very good for me. PS: Summer temperatures over 100 and fire nearby kept us at home too. Going to work on my health and schedule fun stuff for this summer.

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    Wandering, that does sound like you had a really tough 2021. Mine was not so bad, just a medicine switch of my own accord because I knew I was progressing, even though it didn’t show. I hope you have a much better 2022. I will take a nice quiet year. That would be awesome. Happy New Year.

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    Darn it, I forgot my pills again today. I am forgetting because I'm one week on and one week off. I do better when I take something every day. I will put a few alarms on my phone from now on. As soon as I remembered, I jumped up and took them, five hours late. I probably should have skipped it. Oh, well. It was also more than 30 minutes after I ate. I hope it's not an issue

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  • BevJen
    BevJen Member Posts: 2,523
    edited January 2022

    KBL,

    I am one week on and one week off. I try to remember -- don't have alarms on my phone -- but sometimes I think I "forget" just because I hate this drug so much. I think taking it 30 minutes after you eat is only because supposedly that's when it's maximally effective. I don't think it's not effective at all if you take it later.

    If I'm home, I put the pills out right when I eat -- that way they are staring at me when I'm eating, and somehow, that sears into my memory that I need to take them. Maybe try that?

    Good luck.


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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    Thank you, BevJen. I will definitely try that. I have a thyroid med I take daily. I never forget to take that, no alarms needed. Such a pain

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  • Nkb
    Nkb Member Posts: 1,436
    edited January 2022

    KBL - I'm 7/7 also On my active week I have the bottle on the table , when I enter the kitchen for meals Iput two pills in the lid and set a timer. I start the timer when I start eating. I would have forgotten many a time if I didn't have this routine.


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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    Maybe it will be better to keep them in the kitchen. I have them in a 7-day pill container. Setting an alarm as soon as I eat may work. Thank you

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2022

    I keep my daily vitamins & stuff on a salad plate on my counter-3 groups, for breakfast, lunch and dinner. Then I keep the week's worth of Xeloda in a pill minder and that is propped up behind the salad plate of other pills.

    So they are always in sight. I use an old-fashioned (pink BC) kitchen timer that ticks and set that to 25 minutes. The ticking reminds me.

    Has worked well for 4 years.

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    Thank you, Denny123. I am sure to take all of the ways that everyone has and use the ideas to create a better system

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited January 2022

    Hello everyone.

    Had progression on my recent scans so leaving Taxol behind and starting Xeloda in a couple weeks. Sure am hoping this one works.

    Movingsoccermom

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    movingsoccermom, sorry about your progression. I’m on. 7/7 schedule, and I find it pretty tolerable. I hope it works for you

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2022

    I just found out this morning that I am negative for Covid! It took 14 days to find out! I had watched my 9 year old grandson on Dec 29th and that evening at home he started to cough non-stop. And he tested positive.

    I haven't had any symptoms, other than my usual mild congestion and scratchy throat, which is what Xeloda does to me.

    Whew....

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  • Denny123
    Denny123 Member Posts: 1,886
    edited January 2022

    Moving...sorry that your Taxol failed byt welcome! Watch foods high in Folate and Folic Acid! I use Aquaphor at night with food service gloves and silicone socks. They have worked well for my 4 years of Xeloda.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited January 2022

    Good luck, Moving! Xeloda is an old and effective drug, and we hope it will be so for you. It’s also pretty well tolerated. Don’t be frightened of Xeloda

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    Denny123, Yay. I know that’s quite a relief. So glad it worked out for you. 14 days is ridiculous.

    Question: My liver numbers keep rising. They were in the high 30s last month, just above normal. Now they’re in the 60s. I’m thinking it’s the Xeloda. Have an appointment Monday with onc

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  • Nkb
    Nkb Member Posts: 1,436
    edited January 2022

    KBL- my total Bilirubin is high (up to 1.9) but, the direct bill (a follow up test) is normal- showing it is not my liver- my other liver tests are normal- which test is in the 60s?

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    Both the ALT and AST. AST is 64, ALT is 66. They’ve been normal until the last two months. Last month they were mildly high, in the high 30s. I am wondering if my onc will lower my dose. I’m on 3,000 mg per day.

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  • Nkb
    Nkb Member Posts: 1,436
    edited January 2022

    KBL- the upper limit for ALT at my lab is 41-

    My PET shows bony progression in L hip, femur, sacrum and L2. Don’t know if these are zappable or what MO will say. I meet with her in 2 days. The SUV are 4-5

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  • KBL
    KBL Member Posts: 2,521
    edited January 2022

    Nkb, it’s weird how different labs have different limits. I believe at mine the upper limit was 39. Thank you for letting me know.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited January 2022

    Nkb, good luck with your meeting, and thanks for the update on the PET. SUV of 4-5 isn't particularly high, is it? Maybe lower level progression in those bony areas?

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited January 2022

    Re the forgetting of taking Xeloda I too have problems just in the evenings and have forgotten a couple of times. My meds are all organised in dosages but I’ve found that if I eat first I have more trouble remembering at evening time, so now I take them 5 mins before my evening meal, which seems to work better for me. I too hate taking them which doesn’t help. InterestinglyI also hate taking the calcium +vit D horse tablets because they taste like chalk and are huge. However, I now have eye drops as my eyes are watery and also dry and I’ve found if I chew on the tabs at the same time as putting the eyedrops in, my brain focuses on the eyes and seems to not mind the horrible tablets….Result!

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  • Nkb
    Nkb Member Posts: 1,436
    edited January 2022

    Lynn- I think that is pretty low level SUV- but, will see tomorrow what my MO thinks- would love not to change to IV chemo and get port and all that at this point. Maybe I can zap and hang in there for another 6 months.

    Karenfizibo-I think you are supposed to take them within 30 minutes of a meal- that's why I put them out and set a timer when I start the meal.

    I also get the calcium petites- only 200 mg and small pills and take 2- your body can only absorb a certain amount anyway at a time- best to get it in food if you can. I also get dry eyes with Xeloda- tho seems to come and go for me.

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