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All about Xeloda

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Comments

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2015

    for all of those on your first cycles of Xeloda, I was told that the naseua would be bad the first few cycles. Then it would settle down. And for the most part that was true. 2 years later and I only rarefly get nauseated. Hang in there. Your body has to adjust to the new medication. You will find after a while that YOu learn what type of symptoms you will have on what days. For me it is day 10 and 11 that I feel like crap. I bounce back a little after that. But boy day 10 and 11 are tough. And always remember you can adjust your dosage or pattern for taking the medicine to eliminate any SE that are too much. Don't be afraid to say this isn't working lets try somethig else.


    hang in there

  • kt1966
    kt1966 Member Posts: 1,021
    edited February 2015

    Has anybody developed bloating & a bit of a tummy? Just wondering if it's xeloda se's or something else going on....

    I have read ILC can go to GI tract & abdomen area, trying not to think the worst...

    Will see my onc in a week & a half, so will ask about it then.


    Have a good weekend all.


    (Re nausea- I seldom have it now. Sometimes notice it when I'm at work, but having something to eat seems to settle it

  • hansaim
    hansaim Member Posts: 68
    edited February 2015

    I have not had any bloating but during my X on week, I get loose stools several times.

    I just started cycle 21. I saw a resident doctor yesterday instead of my regular MO. She told me that she met a patient this week who has been on Xeloda since 2009. She started her 66th cycle. It was so encouraging to hear that I wanted to share with you all.

  • gciriani
    gciriani Member Posts: 195
    edited February 2015

    Hansaim,

    Same here: loose stool but only occasionally. We have modified our diet, to exclude carbohydrates, keep animal proteins to a minimum, and eliminate red meat. Lots of legumes and delicious soups. The dietary change, which started at about the same time Xeloda started, seems to have compensated for the loose stools, keeping them to a minimum and not a nuisance.

    The lady who is on her 66th cycle after 5 years, is she on a four-week schedule? That seems to be the result of 5 years times 52 weeks/year, divided by 66 cycles. I'm asking because the majority of those writing comments in this thread seem to be on a two-week schedule, that is one week on and one week off.

  • Romansma
    Romansma Member Posts: 650
    edited February 2015

    KT, I have bloating. I wonder the same, since I have ILC too. Hard to know whether things are SEs or the cancer. I'm not a fan of this chemo. For that matter, I'm not a fan of any chemo. Can't believe after all this time that we are still poisoning ourselves to kill cancer cells. I know this works for some. I am truly happy for them. Then there is the other 60-70% that take the drug and suffer for no reason. There has got to be a better way. Genetic testing. Targeted treatments. Stop throwing everything at us to see what works and figure out what works first!

  • kt1966
    kt1966 Member Posts: 1,021
    edited February 2015

    Hi Romansma. I've read you're not liking (or your body's not) liking xeloda. No fun :(

    Wouldn't be so bad if we knew for sure that it was working!

    It would be so nice to not have to put poison in our bodies, I agree. Amen for targeted treatments!


    I guess I'm a bit worried because my tumour markers have still been going up for the 6 months I've been on this chemo...

    I'm relaxing with my feet up in a cool breeze (summer here) after work where it was hot! Phew. I was feeling a bit nauseous again, so nice to stop & have a cup of tea :)

    Take care

    kt

  • mscal02
    mscal02 Member Posts: 167
    edited February 2015

    kt: I sip a hot cup of lemon water every morning before I eat anything. Maybe that's helping me with bloating. 

  • blondedoris
    blondedoris Member Posts: 57
    edited February 2015

    Hayes everyone

    Just checking in again - completed one cycle and this is day 1 of the 2nd. So I'm taking 1800mgs Xeloda twice daily, and so far the SEs have been fatigue, nausea/heartburn, insomnia and some joint pain. It's not in the same league as FEC/Taxotere was for me but still unpleasant...but will stick with it as there's been so many good stories about how it can work once it gets going. Doc has given me some prescription stuff for the heartburn and something to help me sleep, so I reckon once I get those under control I'll be fine.

    As others have said, I also get bloating but I think that's from the nausea/constipation the drugs cause. Will stick with it and see what the next lot of scans say; they're scheduled for sometime after the 3rd cycle. As LeftFootForward says, the nausea should settle down and if it doesn't we can ask to try something else

    Gentle hugs everyone! No-one likes a bear hug when bloated and sore lol

    xx

  • hansaim
    hansaim Member Posts: 68
    edited February 2015

    gciriani, my MO told me that the regular schedule is 2 weeks on and 1 week off and that's how I got started. If it works, patients continue, but dose may be changed to reduce the SE. After a couple of months of 2 weeks on 1 week off, I was feeling much better (less pain and better mobility) but the neutrophil was usually too low to start the next cycle after one week off, so sometimes, I had 2 or even 3 weeks off. After a few months of this, I had a progression. So we changed the schedule to 10 days on and 11 days off and that's how it's been for a while. I do not know that lady's schedule who is on 66th schedule. I just pray that X works for a long, long time for us.

  • Leah_S
    Leah_S Member Posts: 1,929
    edited February 2015

    I'm also on 2 weeks on, 1 week off. I don't have too many SEs - no nausea but some foods make my stomach feel unsettled so I know what to avoid. The big thing for me is the fatigue. I am EXHAUSTED!

    Unfortunately, TMs are going up a lot. I had a PET/CT so when we get the results we'll see what we do. I really don't look forward to IV chemo but that might be next. One of the best things about Xeloda is that it's NOT IV so I don't have to schedule my life around txs.

    Leah

  • kpspur
    kpspur Member Posts: 1
    edited February 2015

    Hi all! New to the this forum and will be starting Xeloda in a coupe days. I have a few questions I'm hoping can be answered. First of all, does anyone have any suggestions as to brands of lotions and creams that work best for hands and feet. Also for a specific type of glove or socks to wear while sleeping?

    Also, I've noticed a lot about HFS, what is this exactly?

    My onc said I could have diahrea, anyone have serious problems with this?

    And lastly, has anyone's hair thinned or fallen out? My hair fell out while on Taxol and is just now growing back.

    Thanks for any tips and help!!

  • Leah_S
    Leah_S Member Posts: 1,929
    edited February 2015

    Hi kpspur, welcome to this forum! It's nice to meet you but boy do I wish it could have been under different circumstances.

    I'll try to answer your questions.

    Lotions: gciriani's wife had excellent response to cream with uritidine. I think he had to make it up himself so you can PM him for info. Ebru (stagefree) found henna to work very well. A warning with that - my onc told me not to try it since it's a common allergen and I'm the allergy queen. I use Ahava Intensive foot cream which is excellent. I think it's because of the aloe vera and Dead Sea minerals in it. I have seen other women in the past haveing very good results with Bag Balm and Udderly Smooth. So you see you have options. Cotton socks are probably best, though not mandatory. All the is to take care of Hand-Foot Syndrome (HFS, not NFS).

    I had diarrhea the first cycle I used Xeloda - one or two days, and I used immodium. Then just after the second cycle I had very bad diarrhea but it turned out I had an intestinal blockage (I stopped the Xeloda for a month due to the surgery and tx for this) so I'm not exactly a typical example.

    My hair wasn't affected by the Xeloda.

    All together, I've found it a fairly easy tx to tolerate.

    Best of luck on it.

    Leah


  • mandymoo
    mandymoo Member Posts: 632
    edited February 2015

    Hi KT, I sometimes get bloating and I had IDC (and IBC), so I use buscopan to relieve the pain. Get it checked out though seeing you have ILC.

    It is very encouraging to hear that someone has successfully been on Xeloda for 5 years. I have been on it for 27 months (3 week cycles). I tolerated the HFS and tummy problems the first year, and knowing that each cycle is different, I did realise that my side effects started on or after day 12 of my cycle. Knowing that some ladies are on a 7 day on/off cycle, I discussed this with my onc. He wanted to change me to 14 days on/14 days off as he believes in 3 week and 4 week cycles only. I get a blood test before each cycle. I tried this and still had severe side effects after the first cycle, so I decided to go back to a 3 week cycle and I am on 11 days on and 10 days off. The side effects are and have been manageable since I changed this regime which is over a year, I do not get my days confused either, and my onc has accepted my decision. He even writes out my prescription my way.

    Good luck with Xeloda everyone,

    What works for some unfortunately may not work for others, but it gives us hope.


  • MameMe
    MameMe Member Posts: 215
    edited February 2015

    Hi, Just a brief chime-in for KPSuur,

    I started Xeloda in early Sept, am on a three week cycle, take 2000mg daily, which is reduced from a starting dose of 3500 daily. The absolute best stuff for hands and feet here has been something called Working Hands and a similar compound called Healthy Feet. I get it in a feed store, Hammond Tractor or something like that. Comes in flat cans.

    Taxol for a few months then Xeloda has seemed to stop progression and maintained stability for me. My vision has improved a bit and that has been unexpected and very positive.

    Big hugs to all, Mame

  • Kessala
    Kessala Member Posts: 91
    edited February 2015


    MameMe, thank you for mentioning the lotions you've found helpful for hand/foot syndrome.

    The brand name is O'Keeffe's.  The containers are shaped like and about the size of hockey pucks.  I've found it at Home Depot, Walmart and Menards.

    O'Keeffe's Working Hands is in a green "puck" and the O'Keeffe's Healthy Feet is in a blue "puck". 

    Hope this helps anyone who is trying to locate this product.

    Kessala

  • Leah_S
    Leah_S Member Posts: 1,929
    edited February 2015

    Unfortunately, Xeloda has turned out to be a fickle friend. My latest scan showed the bone mets are incresing and one of the liver tumors has grown. It's on to Navelbine for me.

    Best of luck to all on Xeloda.

    Leah

  • blondedoris
    blondedoris Member Posts: 57
    edited February 2015

    Sorry to hear that Leah :o(

    I'm taking Vinerolbine (tablet Navelbine) and it's not that bad so far - a bit of nausea on it but nothing the tablets they give with it doesn't control.

    Have you had rads to your bone mets? The one on my skull seems to be growing so I'll be getting some rads to that shortly to see if that helps.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited February 2015

    Giovanni,

    What is the difference between your uridine recipe and perscription strength Urea cream? I have used perscription strength Urea cream in the past for cracked, dry heels.

    I've been using organic aloe vera oil that I buy on Amazon. It definitely seems to help. I have some HFS but using the oil and keeping my feet protected (I found dance shoes to wear instead of dancing bare foot) seems to work.

    Best, Susan

  • mscal02
    mscal02 Member Posts: 167
    edited February 2015

    Hi. Just wondering who has tried Giovanni's recipe and if it has worked for you ? I don't want to spend a lot of monies on products to only have them get trashed. So far besides my hands turning dark I haven't had any problems with HFS. I know what works for some may not work for others. And also is anyone on another treatment along with Xeloda ?

  • Reneeswan
    Reneeswan Member Posts: 58
    edited February 2015

    mscal02, I am doing herceptin and perjeta with xeloda. I have been on xeloda for two and a half years. Just added perjeta 4 weeks ago. Bag balm works best for my feet, but everyone is different.


  • mscal02
    mscal02 Member Posts: 167
    edited February 2015

    Thanks Renee: That's a good while to be on Xeloda : I hope to get  to stay on it that long with good results. I've been on it since November, my tumor markers had dropped last month. 

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited February 2015

    sorry the xeloda didn't work for your liver mets. Hoping your next med works wonders for many years.

  • gciriani
    gciriani Member Posts: 195
    edited February 2015

    Susan in SF,

    Urea and Uridine have nothing to do with each other. In a nutshell, Uridine is a remedy for HFS induced by chemo, and Urea is a palliative.

    I researched the topic extensively because the oncologist had to stop Xeloda (Capecitabine) for several weeks, because the chemo-induced HFS was so severe for my wife. And I found Uridine was the only drug undergoing trials, with solid science and research behind it. All the rest are palliatives, that is things that soften the blow.

    To understand it helps reviewing how Xeloda causes HFS. Capecitabine, which is the proper chemical name, is broken down in your body into 5-FU (5-fluorouracil), which is toxic to cancer cells. Part of it leaks out of capillary and accelerates the death of body tissue in general; this is particularly amplified in body parts that have lots of capillary and are subject to pressure. Therefore hands and feet are primary candidates, but the same thing may happen in the mouth (mucositis) and in the genitals.

    Urea has moisturizing properties, thereby helping your hand or foot being treated more gently when it rubs against fabric, shoes, pressure in general: it helps. Uridine instead, effectively slows down the effect of Capecitabine on your feet and hands. Those skin cells do not die as quickly and your body has time to regenerate part of the tissue, thereby decreasing by a notch or two HFS.

    Uridine-based cream was discovered in a lab accident around 2000, and a German hospital started using it as a routine treatment for patients with Capecitabine. A couple of years ago it started clinical drug trials. I have been corresponding with the authors of the papers that first proposed it, and they explained to me that several other "remedies" are actually counterproductive. Our oncologist gave us thumbs up, because Uridine-cream is safe: it acts topically, whereas the cancer is in the bones, so Capecitabine is counteracted only where needed.

    I'd be happy to share the research papers and articles I have.

  • mscal02
    mscal02 Member Posts: 167
    edited February 2015

    Giovanni: I saw two types of uridine on Amazon. Whice is the correct one?

  • gciriani
    gciriani Member Posts: 195
    edited February 2015

    Mscal02,

    I used the one marketed by Jarrow, because the manufacturer site lets you verify the formula. For other brands I couldn't find anything, therefore I ignored them. Mind that these are salt of Uridine though; you can find other posts of mine in which I explain the differences between Uridine and Salts of Uridine and my tests (on my wife) with both. Now I buy in larger quantities the pure form (enough for 90-day, twice-a-day supply).

  • mscal02
    mscal02 Member Posts: 167
    edited February 2015


    Thanks Giovanni: I'll chek out theier website.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited February 2015

    Thanks for the clarification Giovanni!

    I seem to have caught a nasty virus and have barely been able to get out of bed all day. Has anyone else experienced this while on Xeloda and did you stop taking it until you were better? I e-mailed my doctor but haven't heard back yet.

    Thanks, Susan

  • GrammyR
    GrammyR Member Posts: 297
    edited February 2015

    SusaniSF- Check you temp, if its 101 then call your MO or clinic.You will need to be examined.Maybe antibiotics. Go to ER if no answer from clinic- it could be serious.Gentle hugs.

    Rene


  • Maureen813
    Maureen813 Member Posts: 1,826
    edited February 2015

    Susan

    How ru feeling?

  • mscal02
    mscal02 Member Posts: 167
    edited February 2015

    The Xeloda seems to be working ! I got my lab work back from Wednesday today. My tumor markers are still dropping. I'm going to ask for scans to be done in April. I want to know how my organs are doing. The last time I asked for scans, my oncologist asked me what did I want to see ? I told him that I wanted to see everything, not just my bones.

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