All about Xeloda

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Comments

  • gciriani
    gciriani Member Posts: 195
    edited January 2016

    HighHopes,

    Xeloda dosage is not done by weight but by skin surface. I posted here an explanation on how to make the calculation.

  • highhopes
    highhopes Member Posts: 51
    edited January 2016

    What does everyone use when taking this med? I was told not to touch the meds with my hands but to use either gloves, a spoon or tweezers in handling the meds.

    gciriani, thanks for the information.

  • Rseman
    Rseman Member Posts: 69
    edited January 2016

    wow highhopes! No one ever told me that. I've been touching the stuff since October. Oops

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2016

    High Hopes- I was taken off my Xeloda for both my craniotomy and my liver resection. Only for a brief period of time, usually about 2 weeks. To put it simply, you don't heal well while on Xeloda. So my guess is that is why they said no surgery while on Xeloda. I would ask if you could have the surgery if you took a break from Xeloda and then went back on after some healing time. But what do I know.

  • highhopes
    highhopes Member Posts: 51
    edited January 2016

    Rseman, I, too was surprised. When I read the information sheet that came with the drug, it said to use gloves and safety glasses to prevent contact with the skin. I asked the nurse practitioner and she said yes, that you shouldn't touch the tablets with your hands as you can transfer xeloda as is it a chemo drug. She said whatever you use to keep it separate from everything.

    By the way, do you still have a lot of snow?

    leftoverfor, thanks for information regarding having surgery. Will have to wait and see what the doctors say. As I'm beginning xeloda tomorrow, I think the doctors will have me wait a few months to see how I progress on the drug and how serious the cataract is. I find on these discussion boards that the people going through the protocol sometimes know more than the doctors.

    Highhopes

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited January 2016

    I read that business about gloves, and have chosen to ignore it. I tap out three pills into the pill container top and then flip it to release the pills onto my placemat. This process means I have not come in contact with the pills. I then, after making sure that my hands are totally dry, gingerly pick up one pill, pop it into my mouth, and drink a ton of water to swallow. I then repeat two more times. I am living with cancer, not living in fear of touching my medications. And safety glasses???? Oh get real!

    Yea. This stuff is toxic. This stuff should not be in contact with our bodies. And yet, we are expected to actually put it in our mouths! And so, I am not going to put on gloves and glasses twice a day and give this stuff all my power. Bad enough I have to eat breakfast!

    *susan*

  • babs6287
    babs6287 Member Posts: 1,619
    edited January 2016

    Susan, I couldn't agree with you more!
    Babs

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2016

    I have always used my fingers to take my pills. I wash my hand afterwards.id be crazy if I had youse gloves every time I took my Meds.

  • gciriani
    gciriani Member Posts: 195
    edited January 2016

    Handling instructions are standard instructions for chemicals that are toxic, and chemotherapy drugs are; the instructions are not something specific to Xeloda. So do not worry.

  • highhopes
    highhopes Member Posts: 51
    edited January 2016

    After reading all the information I can and receiving your input it helped me to make my decision. I decided to use the jello shot cups for my meds.

    Susan_02143 - I'm not afraid of taking the meds. Cancer is just another issue in my life that I must deal with, as the rest of you strong people are doing.

    Thanks one and all,

    highhopes

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2016

    HH, 4 pills morning/night is a lot. That was what I started out with and had a horrible time. Dropped to 2 pills day/night, then went to 2/3 pills and now I'm on 6 pills a day 3 morning and 3 night. I have been on for a year now. I take my pills by dumping 3 into my hand and popping all 3 in my mouth. Want to get those suckers down and gone!

    Susan, love your explanation of "touching" the pills.

  • gciriani
    gciriani Member Posts: 195
    edited January 2016

    The number of pills is actually not what's important in the dosage, because there are 500-mg tablets and 150-mg tablets. What's important is the total number of milligrams prescribed per day.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2016

    My pills are 500 mg.

  • babs6287
    babs6287 Member Posts: 1,619
    edited January 2016

    I have a question for everyone.

    What do you know about chemo sensitivity testing? My BS recommended I see an MO for a second opinion. He's a big advocate of this testing and my regular MO is an advocate of genome testing.

    Would like your input.

    Thanks,

    Babs

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2016

    I think any additional information is great. That is if you can afford it. Sometimes insurance doesn't cover such tests.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited January 2016

    Babs,

    Dana Farber is really into what they call the oncoPanel. This panel is essentially the same as the genome testing. Just their own proprietary version. They have been building a huge database. The primary purpose is to match patients with treatments, especially trials. I didn't have to pay for this panel. It is a trial at Dana Farber, so they are absorbing the direct costs.

    I think chemo sensitivity needs to be the next standard. Who wants to undergo 6 months of taxol to only find it has broken your body and also hasn't worked?

    *susan*

  • lulubee
    lulubee Member Posts: 903
    edited January 2016

    Interesting about Dana Farber. My oncologist ordered Foundation One testing for me when my mets were discovered in 2010. She had to fight insurance to get it covered, but she argued that the one-time testing would cost them far less than several months of paying for treatments that did not work.

  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    The impact assay study (genome testing) doesn't involve any costs to me but the chemo sensitivity will. I'm thinking if/ when I get progression I'll have the testing done and then will have my regular MO treat me with that extra bit of information since the second MO stated that if I started with him I would be cured and not have a recurrence which I can't see how ANY Dr could or should say something like that

    Babs

  • susaninsf
    susaninsf Member Posts: 1,099
    edited February 2016

    Babs,

    Wow! Your second MO sounds like he thinks he is God. I wouldn't trust him!

    Hugs, Susan

  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    SusaninSF- yes he had the g-d thing going on. But I will use him if/when I need him to do the chemo sensitivity testing since my MO doesn't offer it.

    Babs

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited February 2016

    Bottle no 2 is now empty!!!! Thursday I will see some numbers. Should give me an insight into the effectiveness of this protocol for me. Overall, Xeloda is actually a bit easier for me to tolerate than Ibrance was. My pain complaints are the HFS, GI issues, and the blasted fatigue. But that beats the open sores I had on all of my soft tissue and the resulting pain I had for most of my Ibrance experience.

    Another month down!

    *susan*

  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    Susan. I hope the numbers on Thursday show that X is working! Fingers crossed!!!!

    Babs

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited February 2016

    ... and toes!!!

    Thanks Babs.

    *susan*

  • sandilee
    sandilee Member Posts: 436
    edited February 2016

    susan-My tumor markers have been accurate in the past, but with this drug, they haven't changed much, yet my liver mets have reduced a bit according to my CT. I think it may take longer for the markers to show improvement with this drug, in my case, anyway.

    Good luck. I feel like you do, in that this is easier than the Ibrance/ Femara protocol, in that my blood counts are stable enough on it that I don't have to take days off. Also, I don't worry so much about avoiding germs and infections. I am not crazy about the HFC that seems to hit right before I finish my cycles, and then lasts a few days into the days I'm off, but if it works, it 's a small price to pay.

  • babs6287
    babs6287 Member Posts: 1,619
    edited February 2016

    Sandilee

    I agree with you. X isn't bad if it's working!

    Let's hope it does for all of us for a long time!!!!

    Babs

  • RosesToeses
    RosesToeses Member Posts: 244
    edited February 2016

    Susan, way to go with 2 bottles down!  Good luck tomorrow!  (and, fun fact, my 2nd and third toes on each foot have been naturally crossed at the tips since birth, so toes as well as fingers will be totally crossed for you Happy )

    I agree about Xeloda being easier than some of the antihormonals.  I shake my head when I think about how much I dreaded going off Afinitor to start this chemo, but even with slight hand and foot issues and occasional nausea, it's been so much easier for me to deal with than the mouth full of sores I got from Afinitor.  Who knew?

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited February 2016

    sitting here at DF and my blood pressure is wildly high. Has anyone experienced this as a Xeloda side effect? Somewhat concerning. Of course, I will ask my doctor as soon as my appointment begins, but often the collective wisdom here is more accurate.

    susan

  • RosesToeses
    RosesToeses Member Posts: 244
    edited February 2016

    Good luck, Susan, hope the appointment goes very well!  My blood pressure hasn't gone up, but no idea if it's something that can be a side effect.  Let us know how it goes!

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited February 2016

    I am now home from my Dana Farber visit. Last month I agreed to a trial that claimed " on occasion, you will have a little extra blood drawn." Imagine my surprise when he had to go get a bag filled with vials! 10 vials of blood drawn today. As usual, I held the little bit of gauze and then this man tied me up as though I was loosing an appendage. Tight, tight, tight. As you can imagine, as I posted earlier, my blood pressure was off the charts! I will keep checking the pressure, but I am pretty sure that having a tourniquet on my arm while having my blood pressure read affected the results.

    Dr. Christina arrived the moment the blood work popped up on the hospital portal, and unlike me, she could see the tumor marker numbers. DOWN 18%!!!!! Yahoo!!! As I told her, I can tolerate this drug just fine if it will work for me. I am delighted. These markers have always been a good indication for me, and I don't believe that this will have changed today. [And she was not worried about the blood pressure readings. A little elevated she said. Medical folks can be awfully understated.]

    Off to celebrate with a northern Chinese meal,

    *susan*

  • RosesToeses
    RosesToeses Member Posts: 244
    edited February 2016

    Hooray!  Congratulations on the great tumor marker drop!  And glad the blood pressure isn't a problem, enjoy every bite of you Chinese food.