All about Xeloda

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  • goldie0827
    goldie0827 Member Posts: 6,835
    edited September 2019

    What is your dosage Rain?

  • denny123
    denny123 Member Posts: 1,529
    edited September 2019

    Kendrasue...The toenails get loose from some chemos, like Xeloda and the Taxanes, namely Taxol and Taxotere. It is because the chemo goes to the tiniest nerves and that would be the fingernails and toenails. It had nothing to do with your shoes. 17 years ago, when I was on Taxotere, I wore only sandals, and still lost my big right toenail.

    Tea Tree Oil is a natural antiseptic and I get it at any drugstore, in a small bottle. It is a liquid, and I use a Q-Tip, dip it into the bottle, and put it on my cuticles and under my nails. It is very mild, and I am so glad that it doesn't smell as nasty as it did 17 years ago. Now there is no odor, actually.

    Betadine is used for infections, and I also apply that with a Q-Tip, on the toes that get sore. So it is stronger. I use the Tea Tree Oil and Betadine every morning, after I wash off the Aquaphor from overnight. Then I also put on a fresh coat of Aquaphor and thick socks. If my nails are sore, I use Betadine twice a day. The Betadine can stain, so let it dry before putting on socks.

    Joyner...my cuticles are like that too, very long and hard. I try to push them back after my shower, but it doesn't help very much.

  • cling
    cling Member Posts: 263
    edited September 2019

    I use Jason tea tree oil nail saver. It is in a small bottle just like nail polish with a brush in the cap. Since I am bare foot or in sandals all day long. I usually apply tea tree oil and let it dry or wipe it off by the end of day. My big toes show some dark vertical lines but in general all nails have been healthy.

  • denny123
    denny123 Member Posts: 1,529
    edited September 2019

    cling...did you just start Xeloda? My nails were okay last summer, but not this summer. I started in Feb of 2018.

  • cling
    cling Member Posts: 263
    edited September 2019

    Denny, I started X in November 2018. I am on 4000 mg per day, 7 on 7 off. As I said previously, I am the lucky one that I have not developed HFS , or nail problem yet.

  • denny123
    denny123 Member Posts: 1,529
    edited September 2019

    Cling...lucky you! I am only on 2,000 a day and my toenails look terrible.

  • dorimak
    dorimak Member Posts: 89
    edited September 2019

    Hello, I was wondering if anyone was taking Carafate with Xeloda? I had a brain met treated with radiation and due to multiple delays I was on Dexamethasone for way too long...like seven weeks. It wreaked havoc on my gut and I've had bad reflux. I got terrible side effects from the Prilosec and Pepcid so I was started on Carafate which coats the GI system. I resume Xeloda tomorrow and asked MO on Friday if the Carafate would be an issue. He said it wasn't contraindicated but when I look up Carafate it warns that it can make it harder for your body to absorb other medications. It makes sense if it puts a coating on your digestive system that it may inhibit absorbtion. Wondering if anyone knows about Carafate and Xeloda.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited September 2019

    Dorimak, can you talk to the pharmacist at your cancer center?

  • denny123
    denny123 Member Posts: 1,529
    edited September 2019

    Good idea...I always check with my specialty pharmacist about interactions with Xeloda.

  • dorimak
    dorimak Member Posts: 89
    edited September 2019

    Good thinking. I called the Specialty pharmacy that dispenses my Xeloda and they said it's fine. She said they have a database that logs drug interactions and Carafate was not listed. I wonder how they can definitively stay for every drug although she did say that Carafate was a common drug so hopefully they'd have some data. Appreciate the input.

  • Rainedrop
    Rainedrop Member Posts: 43
    edited September 2019

    Goldie, I am at 3000. I am prepared to start my next round tomorrow! Yuck. I think part of the problem is the Ascites. I will have it drained again on Friday! I can’t wait!!! It pushes my diaphragm up and I can’t breathe properly

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited September 2019

    Rain, that doesn't seem to me to be too high a dose, I'm doing one pill less than you. When I did 6, I got a rash and itched almost my entire body, drove me nuts. It's been awhile, I often wonder if I should up my dose to that? Oh well, guess I should ask my MO about that.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited September 2019

    It seems like there are many various dosages of Xeloda that people here are on. I’m not sure how our MOs know what amount to adjust to for best efficacy and minimize SE I guess every case is unique. I am trying to get liver mets shrinkage so they see tumor control before I have a resection. They are hoping Xeloda will work (faslodex & verzenio did not achieve shrinkage)

    I looked up the recommended dosage for weight/height (1250 mg/m2 administered orally twice daily, 2 weeks on 1 week off) I am taking 2300 twice per day which is the right amount for my stats. I am in cycle 2

    I am now having uncomfortable burning sensitivity/pain in my feet and hands. Using creams and soft slippers. It only hurts when walking or using my hands as in chopping veggies. I also have a sensitive spot on my gums that get aggravated from brushing(even with the soft bristles) using magic mouthwash on that.

    Sooooo I reported the symptoms and I am finishing cycle 2 then assessing blood work and symptoms before cycle 3. Not sure what to ask local MO concerning dosage. He mentioned switching to 1 week on 1 week off. MD Anderson MO mentioned dosage reduction if symptoms are intolerable. They are tolerable but uncomfortable.

    Scans in November. Waiting is soooo hard. I remind myself the chemo needs time to really work on the tumors

    Trying to keep my focus on the positives while waiting for the next scan.

    Dee



  • Kendrasue
    Kendrasue Member Posts: 107
    edited September 2019

    I'm having difficulty sleeping, so I thought I'd share what's worrying me. I checked my hospital's online portal this evening to confirm the time of my lab work and Nurse Practitioner appointment later today (Wednesday), and saw my latest CA27-29 results had come in. I read them, and although last month's tumor marker results had gone down, from 242 to 210, this month they went up from 210 to 237. This is approximately my 3rd month or so on Xeloda. This was a shock, and now I'm quite apprehensive about this afternoon’s appointment. Maybe I should request to have an appointment made for the CAT Scan and Nuclear Bone Scan to be done right away, or would it be too soon for the scans to tell if Xeloda is working or not?

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2019

    Hi KendraSue, I noticed you had posted, so I am barging into this thread for a short response. I think it is too early to be concerned about the small increase in your CA 27.29. One month’s increase does not really show a trend, and it could be from inflammation or some other innocuous thing. My MO isn’t concerned unless the trend continues for 3 months or more. I also think that two months of treatment is a little early for scans unless you have issues other than the higher TM. Maybe you could wait another month. How are you feeling overall? How have your other blood test results been? Are you experienced new or increased pain?I know how upsetting it is to see results that you don’t like or want to see, but hopefully, this TM issue is just a temporary blip. Of course, you should discuss your concerns with you oncologist so you can understand the situation and form a plan you will both be comfortable with. Let us know what you decide to do. In the meantime, you remain in my thoughts.

    Hugs and prayers from, Lynne

  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2019

    I totally agree with what Lynn said.

  • Kendrasue
    Kendrasue Member Posts: 107
    edited September 2019

    Thank you so much Lynn and Joyner. So very helpful. I'll report back after this afternoon's appointment.

  • denny123
    denny123 Member Posts: 1,529
    edited September 2019

    KendraSue...I also agree with the above. Anything can cause the numbers to rise, even a small cold.

  • poisedandpink
    poisedandpink Member Posts: 21
    edited September 2019

    I'm curious if any Xeloda takers have had their Alkaline Phosphatase (ALK) Plasma double? Mine was previously 65 and is now 113. Normal range is under 130.

    I'm hoping this is common with Xeloda and not an indicator that something is wrong with my liver or bones. I plan to discuss with my oncologist at my next monthly appointment. But was just curious if anyone on Xeloda is experiencing something similar?

  • AllyBee
    AllyBee Member Posts: 99
    edited September 2019

    Hi poisedandpink

    On a few occasions my liver enzymes have been off, bordering on the high side of normal. With carboplatin it was a regular occurrence but I've also had it while on Xeloda. It went back to normal the next time I had a blood test and my MO put it down to an infection.

    Ally

  • poisedandpink
    poisedandpink Member Posts: 21
    edited September 2019

    Okay thanks! Mine has been a steady climb. The previous test it was at 98 then up to 113. I get bloodwork done again next Thursday so I'll see what happens then. Just trying to prepare questions for my oncolgist if it continues to trend high.

  • snooky1954
    snooky1954 Member Posts: 850
    edited September 2019

    Yesterday was last day of 2nd cycle. (14on7off) Been lucky so far with side effects. However, the last 2 days of the cycle the fatigue was so extreme all that I could do was lay on the couch in and out of sleep. Looking forward to this week off.

  • [Deleted User]
    [Deleted User] Member Posts: 760
    edited September 2019

    Snooky

    I had that fatigue on the first cycle. Hope you get relief Looks like we started about the same time.

    I finished my 2nd cycle and am on my week off. Hoping to get some relief from the burning hands and feet. May have to reduce dosage if it’s not better by Friday. It’s been a tough week with the friction/pressure pain. Trying all sorts of different shoes. I hate just sitting but the feet don’t hurt when I’m off them.

    Dee

  • cling
    cling Member Posts: 263
    edited September 2019

    After 10 months almost SE free, I am leaving Xeloda. The CT last week showed everything is no change, except worsening peritoneal carcinomatosis with moderate ascites increase. ( Never understand the definition of ”worsening” because I have no solid tumor). Onc doesn’t think X is working any more and changed my TX. We comprised on Afinitor Aromasin. Although I am very leery about the AA SEs, I can’t be tied down to IV chemo chair, because I have several travel plans scheduled before May 2020. (I assume I will live at least to that far!) So, on to the new treatment. Xeloda is easy for me, hope you all continue to have success on this med.

  • nkb
    nkb Member Posts: 1,561
    edited September 2019

    Cling- I am sorry about your progression- so distressing and starting a new medication is scary, There are several of us doing well with very few side effects on AA- the thread is really quiet though. Feel free to PM me if you want to as well. I am on 7th month of AA. I also was so scared to start having heard a lot of talk of side effects, but, doing well.

  • denny123
    denny123 Member Posts: 1,529
    edited September 2019

    Sorry Cling! Good luck with the new tx!

  • hartrish
    hartrish Member Posts: 290
    edited September 2019

    I started xeloda Sept 11th, 3,000mg on a two week on, one week off schedule. I just finished my first cycle. Not too bad side effects. Fatigue, nausea, and mouth sores. Taking zofran and ativan for nausea. Using salt water rinses, magic mouth wash and triamcinolone paste for mouth sores. Mouth sores bother me the most. My hands look great, my feet are a little red but not painful. I put different kinds of lotion on my hands and feet at night and during the day.

    Did you find that the side effects on xeloda were cumulative over time or not?

    My MRI is scheduled for Nov 20th to check and see how things are going. I only have mets to my liver at this point.

    Any advice anyone has for me on taking xeloda and countering the side effects would be appreciated.

    thank you

    Tricia

  • Khadessa
    Khadessa Member Posts: 1
    edited September 2019

    Hi,

    I started Xeloda in July 2019 as part of the CONTESSA trial (Xeloda is the control arm) after I had disease progression on Ibrance. I just finished my fourth cycle of 14 days on/7 off. I’m an active beach volleyball player/hiker/cyclist and the hand/feet side effects are making it difficult for me to continue these activities. Lotion, ice, etc have helped a little. I was thinking of silk sock liners to reduce friction for an upcoming backpacking trip I’m taking in the Adirondacks but am afraid the extra layer will increase heat and make it worse. Any active folks out there struggling with Xeloda? Anyone found anythings that help? I’d prefer not to do a dose reduction.

  • moderators
    moderators Posts: 8,506
    edited September 2019

    Hi Khadessa and welcome to Breastcancer.org!

    We're so sorry you're dealing with this unfortunate side effect of treatment, but we hope you find some great support and advice here.

    While you're waiting for the ever-helpful advice from others here, we wanted to share with you the main Breastcancer.org site's page on Hand-Foot Syndrome, which offers some tips to help manage this effect.

    We hope this helps and that you find relief soon!

    --The Mods

  • lizo1
    lizo1 Member Posts: 94
    edited September 2019

    Khadessa,

    My wife Liz was very active like you, beach volleyball, cycling, running were all activities she loved to do. She had to stop most of these due to knee issues which isn't directly MBC related. Cycling, swimming and pilates are her primary activities now and she is managing hand/foot syndrome pretty well.

    She spends a lot of time resting her feet and minimizes day to day chores that involve her hands. I'm confident that this contributes to her success.

    I wish you all the best with Xeloda.

    Grant.