All about Xeloda

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2020

    A question: how long as everyone been on Xeloda? I've been on for 16 mo, and all seems to be working so far. Good blood work. I feel normal except for painful hands. By the way, it appears that I'm losing several nails on my hands from that blasted paronychia. Be careful!

    My onc was expecting Xeloda to fail about 9 mo ago and casually mentioned that to me, I guess so that I'd be prepared. I really do like her. Then it didn't...hooray...at least not so far. PET scan (regular every 3 mo) next week.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2020

    Me, again. Divine, which heel sleeves do you have? Can you send me the link? I've been wearing the full gel-lined footies, which work great, but they're sort of hot.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Divine...ditto what Joyner said..heel gel sleeves.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited June 2020

    Here’s the link for the gel heel sleeves:

    https://smile.amazon.com/gp/product/B016X8DBVM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

    image

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Thank you. Ordered.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2020

    Thanks, Divine...I ordered two pair as well!

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  • lizo1
    lizo1 Member Posts: 91
    edited June 2020

    Lynn - Praying for great reports on your PET scan next week!

    Grant.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2020

    Thank you for remembering, Grant!

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Joyner..count me in, too!

    Sandi

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  • Nkb
    Nkb Member Posts: 1,436
    edited June 2020

    Joyner- me too!

    My feet peeled a lot this cycle, but, no pain or hobbling. My TMs have gone way down, no PET yet.

    The two weeks off, helped hands and feet, still on 2000mg 14/7- labs next week.


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  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2020

    Thanks to all! Fingers crossed !

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  • IntoLight
    IntoLight Member Posts: 1,701
    edited June 2020

    Hi Joyner. What strength Xeloda are you on? (I remember you from the Ibance thread.) I am starting my second week of Xeloda tomorrow. My onc said she started me on the max strength for my height/weight and need, etc., which is 3000, but I plan on asking if she can reduce it for my second cycle. It seems most people tolerate 2000 better with good results and I am wondering why mine is so high. But I do have fast growing liver tumors so perhaps that is her thinking. I am experiencing stomach ache and nausea, but it is pretty constant now and I hope it doesn't get worse. So far my hands and feet are fine.

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  • Leee
    Leee Member Posts: 155
    edited June 2020

    Hi Joyner - I have the same finger nail issues! They’re less painful since trimming them down as far as I can so they don’t snag in anything. Ugh.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2020

    Into Light-

    I'm on 2000/da, 7/7.

    We started at 3000,7/7 because my second opinion onc at Sloan-Kettering suggested that initial plan. My local oncs agreed with her because they're onc generalists and she's a BC specialist (or I assume that's why they went with her advice). My primary local onc, who is the revered head of his cancer institute, told me that the general policy is to start with the very highest dosage suggested for height/weight and then gradually reduce if not tolerable for a patient. He told me that he was very relieved that MSK had suggested both a lower dosage (I assume) and the 7/7 day plan, as he would have felt that he needed to start with the standard recommendation.

    They dropped me, over a period of 16 mo, from 3000/da to 2500/da and ultimately to 2000/da, on which dosage I have been for over a year, I think.

    I'm 5'6" (down from 5'8 3/4" over a period of many years.....I'm turning into a rectangle!) and 135 lbs.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Intolight, I started at 3300 mg/day. I am 5'5" and 125 pounds. I started to have diarrhea and HF brfore my 1st cycle over. MO reduced 2800, then 2300. By 3rd cycle I was on 2000mg with no problems. I had quick growing liver mets, now stable with shrinking.

    Today, I start cycle 4 ( 7/7) . Each cycle 1 week. My MO wants to gradually increase 150 mg per cycle to get best efficacy without big SEs

    Ask away..I am new, too.

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  • lizo1
    lizo1 Member Posts: 91
    edited June 2020

    Intolight, my wife Liz started Xeloda the same time as Lynn (Joyner). She has just switched 2 weeks ago to bicaludamide as she is no longer responding to Xeloda. She also had liver mets and they have cleared up over the last 18 months. Coincidentally, she is trying to move on to Ibrance + bicaludamide but we are currently looking into funding.

    Liz is 6' and 163lbs. She started on 3600mg daily, 14/7 and that was reduced to 3300mg after a few months. She remained on 3300mg, 14/7 for the remaining time and managed well with hfs. There was intermittent gastro type of side effects which were very uncomfortable but she managed without any dose reduction.

    Grant.

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  • IntoLight
    IntoLight Member Posts: 1,701
    edited June 2020

    Thank you Joyner, SandiBeach and Lizo. You greatly help. It sounds like I should hang in there for awhile if tolerable. I am 5'2" and 160lbs so the extra girth explains the higher dosage. I tolerated Ibrance/L very well at 125. My stomach ache is better this morning so perhaps it is regulating itself. We shall see! Have a great day.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2020

    IntoLight. I remembered you, too!

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  • Nkb
    Nkb Member Posts: 1,436
    edited June 2020

    question for people- I’m on 2000mg 14/7 and my ANC Is low- .8. This is the second time in a row it has happened My MO wants to change to 2 weeks on, 2 weeks off ( vs 7/7). What do you think is more efficacious 14 on and 14 off or try for 7/7 which she refused last time unless I increased my dose substantially which I knew I couldn’t tolerate.

    Any thoughts

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2020

    Hi to all. My tx is being changed to Xeloda, so I'll be joining you here to learn about all it brings. I came in at a good point to see already I probably need to order the heel gel sleeves. Thanks too, Divine, for the link!






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  • snooky1954
    snooky1954 Member Posts: 883
    edited June 2020

    Bliss, Don't go into this thinking you're going to have all these side effects. You may not. I've been on it for 9 mos. No GI issues,

    and no HFS. Once I found out it wasn't bothering my feet, I went back to my old barefoot self! And to tempt fate further, I went back to oil painting with all the turps and other solvents that goes with it.

    The only thing I have to complain about is FATIQUE--big time.

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  • IntoLight
    IntoLight Member Posts: 1,701
    edited June 2020

    Bliss, I am new to xeloda also--in my second week of first cycle. So far fatigue is huge but doing ok otherwise. Nausea is only slight...welcome.

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited June 2020

    Snooky1954. Glad you're not having GI issues with this drug. Fingers crossed I won't either; had enough of that! The HFS is what I fear most. Thanks for sharing your experience.

    IntoLight, nice having someone to start out with, but sorry for your huge fatigue. Thanks for sharing your experience thus far and the welcome.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Lots of new folks! We will support each other.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Nkb..just saw your message. My MO wanted to start off at 14/7. I did, but kept having to go off before the end of 14 days and take a break up to 7-10 days.

    She lowered my dose and switched to 7/7 to see if I could make it to 7 dsys on. Worked. She never brought up 14/14.

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  • Denny123
    Denny123 Member Posts: 1,886
    edited June 2020

    Welcome Bliss! How much do you have to take?


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  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2020

    HOORAY...just saw the unfiltered report from my PET this AM.....

    MUSCULOSKELETAL: The CT scan demonstrates extensive sclerotic metastases also noted in the prior scans. There is however no definite focal FDG uptake over the imaged bony skeleton and hence this appears to be due to treated metastases. IMPRESSION: 1. No definite FDG avid focus suspicious for metastasis is identified in today's scan. As mentioned above extensive sclerotic metastases are noted in the CT scan without any FDG uptake since these are treated metastases.

    Thanks for the wonderful support, everyone! 16 mo and counting.....:)

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  • IntoLight
    IntoLight Member Posts: 1,701
    edited June 2020

    Lynn, hooray! So happy to hear this good news.

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  • Nkb
    Nkb Member Posts: 1,436
    edited June 2020

    Joyner! such good news! Hooray for many more months and years!

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  • Denny123
    Denny123 Member Posts: 1,886
    edited June 2020

    YAY Lynn!! Great report!

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