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All about Xeloda

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited January 2018

    Thanks. MO thinks I'm not tolerating it well. Scans in two weeks. Will revaluate. I hate to give it up but these SEs aren't fun. Not that any are but I got used to being semi-normal except for the fatigue on ibrance.

    If it's working I'll have to suck it up. Think he'll write an Rx for a housekeeper?

    I've been using a blue mentholated gel to bring them temp down on my hands and feet. I tried a lotion with Epsom salts but it made me very dry. Minimal peeling. One small crack. Swelling and pain main issues.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2018

    Zills, it may not be an either-or choice of stay on X or quit. One nice thing about these pills is it is easy to make adjustments. If X is interfering with activities of daily living, perhaps your onc will advise changing your schedule or your dose, after maybe an extra week off for healing. The article linked below lists the following, which you could discuss with your onc: dose reduction, pyridoxine [vitamin B6], COX-2 inhibitors [anti-inflammatory], vasoconstrictive therapies, topical emollients.

    Prevention and management of hand-foot syndromes

    http://www.oncologynurseadvisor.com/ce-courses/pre...

    Getting a housekeeper is a great idea; even having someone come in every two weeks is really helpful if you can manage it. You don't want the pressure of scrubbing or harsh chemicals on your hands for sure.

    My research points to urea and lanolin as helpful ingredients for lotion. Dryness does seem to make my hands worse. I have no proof that cold water rinses help, but I do them in the belief it may help lower swelling and reduce the toxins circulating into my feet and hands. I use the cold water on my hands and feet at the end of a (warm but not hot) shower, before bed, and two hours after taking the pills if I can.

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited January 2018

    Thanks SP. I read the article. Interesting. Parts way over my head but I got the gist.

    Minimal peeling. Believe urea helps with that. All my fingers turn as red and swollen as the middle fingers in the picture.

    I have had both dose reductions and time off. Currently 2500 mg, 7 on/7 off.

    Will add lanolin to the shopping list. Celebrex and I don't get along. Do take a b complex vit.

    See MO in a couple weeks plus a scan. So will see what happens. Don't like it but if it's working... May just need more time to adjust and a routine. Heard the iv form doesn't cause h/f. Maybe an option.

  • marylark
    marylark Member Posts: 159
    edited January 2018

    Hi Everyone, I just got my MRI reports of my spine. After 5 months on Xeloda the signal intensity is weaker, the mets are smaller and some of them are sclerotic! While my bone scan last week only said stable the MRI says improving! Coupled with no sign of disease in my liver - I am thrilled. There have been some difficulties with his drug (mainly some bad weeks with high grade hfs), and even with a dose reduction I still have some difficulties with hfs. However I will live with it if I continue to improve.

    This is the first thing that has worked. Letrozole failed. I had a big progression in 3 months on Ibrance/Faslodex. I'm praying this works for a long time.

    Hang in there ladies.

    Mary




  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited January 2018

    Yippee Mary!

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited January 2018

    Was looking for definition of the grades of hfs. Found an article about ...

    In a randomized double-blind placebo-controlled study of breast-cancerpatients treated with capecitabine, the combination of atorvastatin with polyprenol was reported to have reduced the severity of hand-foot syndrome.

    I looked up atirvastarin. It's a cholesterol drug? Not sure I want anymore SEs. Another question for my MO.

  • marylark
    marylark Member Posts: 159
    edited January 2018

    Zillsnot4me, I get terribly red swollen fingers and hands and I find icing them does help. It takes the red and pain away for a while. I keep a bunch of reusable ice packs in my freezer and pull them out when needed. When my feet get bad I ice them too. Not a perfect solution but helps me keeps me going.

    Today I made a 4x batch of meatloaf. I need to use my hands to mix everything, which I hate to do.. It was the first time I enjoyed it. All that cold meat on my hands felt wonderful. Ha!

    Take care,

    Mary

  • pajim
    pajim Member Posts: 930
    edited January 2018

    Atorvastatin is easy to take. Some people get a cough but that's the only SE I've heard of. Millions (literally) of people take it without a problem.

    I wonder why it might reduce HFS? Anti-inflammatory effects? Except that statins don't do that. The are HMG-CoA reductase inhibitors. Keep cholesterol from being made. I wonder if that enzyme has something to do with HFS? I'm too lazy to look it up now. Ask your onc. . .

    Zills, I had burning feet the first few cycles but it's gone away. Only explanation is I've gained 8 pounds and less absorption? Or maybe it can get better as your body becomes accustomed. Or not.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2018

    My feet do not burn the way they did at the beginning; for example, when walking around shopping.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2018

    Zills mentioned looking for grade definitions or hfs. Thanks to cut-and-paste, here are the hfs grade definitions from NIH National Cancer Institiute CTCAE (Common Terminology Criteria for Adverse Events) from the year 2010. (I do not know if any changes have been made since then.) They call grade 1 of any side effect mild, grade 2 moderate, grade 3 severe, grade 4 life-threatening. ADL =Activities of Daily Living

    Preferred Name: Palmar-plantar erythrodysesthesia syndrome (synonym hand and foot syndrome)

    Definition: A disorder characterized by redness, marked discomfort, swelling, and tingling in the palms of the hands or the soles of the feet.

    Grade 1 Minimal skin changes or dermatitis (e.g., erythema, edema, or hyperkeratosis) without pain

    Grade 2 Skin changes (e.g., peeling, blisters, bleeding, edema, or hyperkeratosis) with pain; limiting instrumental ADL

    Grade 3 Severe skin changes (e.g., peeling, blisters, bleeding, edema, or hyperkeratosis) with pain; limiting self care ADL

    Definitions of instrumental and self-care ADL:

    https://www.payingforseniorcare.com/longtermcare/a...

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2018

    Well the cancer Center reinstated my left over grant money for Xeloda. Hurray

  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited January 2018

    Hurray indeed, Dianarose - I am so glad.

  • pajim
    pajim Member Posts: 930
    edited January 2018

    Excellent!!

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2018

    So glad you were approved DR. What grinds my butt is people that are addicted to drugs, lets' say opioids, they get their drugs for free, the ones that help the addiction. While we have to sometimes fight tooth and nail to get a drug that we hope will keep us alive longer.

  • Lindalou
    Lindalou Member Posts: 598
    edited January 2018

    Thanks Shetland for the grading of HF.

    Question: I'm mid way through cycle 5 and fatigue has hit big time. It is an effort to do much at all. Yesterday I overdid it and I'm paying for it today. I'm thinking of doing a dose reduction, but my CT last week showed bone progression and liver stability so trying to stay at my current dose of 3000mg a day. For those who are on cycle 5 or greater, does the fatigue even out? Get better?

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2018

    Lindalou- I’m on cycle six and it’s much better then five was. I really struggled on five with fatigue and tummy issues. I do sleep 10-12 hours at night though. I’m ok once I get up s d have a cup of coffee. I think too it’s partly because wiis so boring here in Maine.

  • minxie
    minxie Member Posts: 239
    edited January 2018

    I'm not fatigued, per se, but man can I sleep. On the weekends I used to get up not much later than my usual work week time, 7. Now on the weekends I can sleep until 11:30! My right hand is cracking, because I use it so much. I heard a recommendation to put Chap stick on the cracks and that helped - they're all healed up.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited January 2018

    i am surely glad i am retired as fatigue is constant go to bed by 8 and wake up at 8, still tired


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2018

    Yup, sleeping more hours and not waking up at 4:00 AM like I did on anti-estrogens. Tired as in running out of steam in the afternoon, but not that inertia lack-of-will fatigue I had on Ibrance + letrozole. All in all, I like X better.

  • artistatheart
    artistatheart Member Posts: 1,437
    edited January 2018

    I'm at the en of cycle 3 and my fatigue and nausea seem much better. My hands and toes tingle and feel burning sensations sometimes but so far no cracking or peeling. I'm praying to keep that at bay as I am a glass and jewelry artist and it is the only thing keeping me sane right now! Getting a scan next week and pray this drug is working......

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2018

    Linda, I've been on X for 3 years. I believe the fatigue was worse when I first started. I think it has let up. I still have it, but am able to push through. I'm one of those people that can not nap. I would try a dose reduction. I am currently doing 5 pills a day (500 mg). I just can't handle 6 and forget about doing 7, that's what I started on. QOL is important to me.

    DR, I sleep that much too, 10-12 hours. In bed by 7 pm, sometimes sooner, and up around 4 or 5.

    Minxie, chapstick really? And you tried it? Name brand Chapstick, because I do not like that for my lips, it always seems to gunk up.

    Artist, good luck on your scans and keeping the HFS away. However, I'm not so sure that's possible, as it is most definitely accumulative!

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2018

    Goldie- I was wondering how long some of you ladies have been on Xeloda. Three years and going is great!

    I started to take a nausea pill thirty minutes prior to Xeloda and it has elped.

    Hubbys doc called and his ct scan was good. Now to get through his surgery and recovery next month. We are both feeling relieved today.

  • denny123
    denny123 Member Posts: 1,531
    edited January 2018

    I have been following this thread since I think I will soon be on Xeloda with Tykerb.  Can't find anyone else on this combo.  I will see my onc Feb 9 after I heal up from my last chemo.

    I have a recurrence in my chest nodes, was on Kadcyla for almost 4 years, but it now stopped working.  Just got off a clinical trial, phase 2 of Poziotinib, which was a nightmare. I lasted 8 days on it.

    I am a 16 year survivor of Stage 4 BC, and have been on chemo the whole time.

    Did anyone get a bad facial rash on Xeloda?  My home health nurse has some patients with the rash, and that was a big problem for me with Poziotinib, besides a severe case of mouth sores and thrush.

    Denise

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2018

    Denny, I’m on my sixth cycle and no rash.

    What is Tykerb? Never heard of it.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2018

    DR, I never really got sick or nauseous. It's the HFS that I suffer with and sensitive eyes. Glad to hear your DH got good scans. Prostate cancer, right?

    Denny, hi and welcome to the home of Madame X. Wow, 16 years? And in the liver? I'm flabbergasted! I DID get the rash, but only on my first treatment, which was 7 pills (500 mg) a day. I did that for 2 weeks and quit. I had blisters on my lips.I'll post a pic at the end of my post. I have posted it before, couple times, but that way you don't have to go back and look for it.

    I'm freckled, so it's hard to tell. I also got it on my chest. Eventually on my arms and legs as well. And it also itched like crazy on the arms and legs. I've been on several different doses. Currently on 5 a day.

    image

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2018

    Goldie- yes it’s grade 4 prostate cancer.

    Hubby had to go to the lab this morning and they had just put up a poster that said if you are using a biotin product not to use it 24 hours before blood is drawn as it can effect the CA125 and other tests.

  • Lindalou
    Lindalou Member Posts: 598
    edited January 2018

    Diana, A Gleason score of 4 is good, and CT scan is also encouraging. Best of luck to your dh in surgery and recovery. My dh had a Gleason score of 9 and staged 3B and despite that is still doing well.

    Thanks for the comments on fatigue. I need to stay at this dose for as long as I can.

    Good weekend to all....

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2018

    lindalou- his Gleason score was 3 but the grade was 4 meaning it’s very aggressive.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2018

    just dropping in to say hello. Wishing you all the best.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2018

    LFF, nice to see you pop in. You had to switch treatments, correct? How is it going for you?