All about Xeloda

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  • mls1
    mls1 Member Posts: 73
    edited October 2020

    my ca 15-3 marker has dropped from over 1000 in June to 70, the cea marker dropped from 260 to 38. The side effects of Xeloda have been pretty bad for me but this makes it all tolerable. My next ct scan is in nov so hoping for some fantastic news

  • ninaca
    ninaca Member Posts: 228
    edited October 2020

    Illimae, consider lowering dose to 2500 a day rather than 2000 a day. I went from 3000 to 2500 and it took care of my side effects (like a miracle) after being given an extra week off to recover. Also the creams I have that have UREA in them make my nails incredibly strong. I sometimes just put them on my nails.

    Okay- Here's my take on strictly following the 30 min. food rules. I was never able to remember, even after setting my alarm and continually pushing snooze. I reread the extensive information on their pamphlet and noticed it said Food reduced both the rate and extent of absorption of capecitabine- the opposite of what I thought! I asked my niece who is a Neurobiologist about Xeloda and food and she sent found this1998 article about pharmacokinetics and Absorption of Xeloda (capcitabene)

    When the initial clinical trials for capecitabine were conducted, the people who designed the trials were worried that the drug would be degraded by the highly acidic environment of the stomach. Eating food makes the stomach less acidic, and so the first patients who took this drug were asked to take it after eating so that it would be less likely to degrade. The clinical trial was successful (cancer patients had better outcomes on the drug) and eventually they conducted other studies to specifically investigate whether taking the medication before or after food made any difference to how the drug is processed by the body (this is called pharmacokinetics). The results of this study were opposite to what was expected - in patients who hadn't eaten, instead of having less measurable drug in the body, they actually found more - so the idea that the acidic stomach was going to degrade the drug proved to be incorrect. However at this point all of the evidence for how safe and effective the drug was had come from trials where people had taken the drug with food, and since drugs have to be prescribed following the procedures used in clinical trials as closely as possible to ensure that patients have the expected clinical experience, the recommendation continued to be for patients to take capecitabine with food.

    I have decided to try and keep within the 30 min rule but don't kick myself if I forget. I then readjust my timing to 10 to 12 hours between the pills if I was late. This information made me worry a whole lot less. HOpe it helps you.

  • denny123
    denny123 Member Posts: 1,528
    edited October 2020

    10 hours between doses is fine

  • denny10
    denny10 Member Posts: 421
    edited October 2020

    Mis 1, good news like this does mitigate the side effects. I hope the scan is good too. Congratulations!!

  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2020

    Great info, Nina...thanks!

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2020

    Capecitabine (Xeloda) has lactose as a filler. I am lactose intolerant. Anyone have problems? Just wondering if I should take lactaid with my am/pm doses.

    I called the pharmacist (the company supplying the drug), but felt that she didn't know what lactose intolerance was. Her reply was that lactose is inert and used as a filler, therefore, no problems.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2020

    Denny123 and Joyner. Any tips to help with pitting of finger tips? Aquaphor and gloves are not working.

    Denny123..is chest pain easing?

  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2020

    Sandi, I've never really had the pitting issue. My primary issue with my hands is when the palms get very red, shiny, stiff, and painful. With no fingerprints or much feeling in my fingertips. I seem to be the only one for whom this works, but when my hands get sore, I just wear nitrile gloves for the day or overnight or whatever it takes, without the addition of any cream. Mine are those purple ones. It always makes them feel better. I think it's the moisture retention. For whatever reason, it worked.

  • elenas401
    elenas401 Member Posts: 170
    edited October 2020

    Denny123: I see you had surgery after stage 4 diagnosis. My MO has sent me to two surgeons and both said, that they wouldn't recommend it for metaststic cancer. My breast tumor is growing, but not much progression except for a lymph node. Nothing more seen in the lungs. My MO has said if not for the lymph node, she'd press for surgery again, and she maybe will if Xeloda works. I'm on my second day now. Your surgeon must have seen that there would be a benefit.

  • denny123
    denny123 Member Posts: 1,528
    edited October 2020

    Sandi-I don't know what you mean by pitting of the fingertips??? Mine are swollen and shiny. My main problem with my hands is that my fingers split open on the inside creases, so I use Bacitracin and band-aids. I use Aquaphor during the day when I am just sitting here typing since it doesn't matter if I get the keys a bit shiny-LOL.

    Thanks for asking about my chest pain. My PCP is working on getting a stress test for me. It is getting better, and now I have been reading where others on X have chest pains. But it sure won't hurt to get a stress test.

    Elenas---19 years ago, they did surgery before chemo, but neoadjuvant tx was in clinical trials then.

    Actually I was misdiagnosed in the beginning...they thought my left was DCIS and my right was Stage 1. A spot was seen on my liver, but 3 liver biopsies missed the spot. So it was assumed to be just a lesion.

    After my bilat-mx, it was determined that both breasts were stage 2. I had A/C and Taxotere and rads. Then a scan showed my liver was filled with tumors.

    So actually, I was Stage 4 from the beginning. If I had been correctly dx-d from the beginning, I would have had chemo first for my liver, and probably wouldn't have had to go through the whole mast & recon.

    It is true that your chemo might get rid of the tumor in your breast and that would be great.


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2020

    Oh Denny123, I misunderstood. My finger pads are creasing and concerned they will split. So trying to plump them up with Aquaphor and gloves.

  • denny123
    denny123 Member Posts: 1,528
    edited October 2020

    Sandi- I get the splits very often on my "toe-pits". I have a deep one now on my middle right toe that I am trying to heal. And now the pit of my big toe is sore. So I am using Bacitracin and a band-aid on it too...in hopes of preventing a split.

    I would suggest Bacitracin and a finger-tip bandaid if you have a sore area.

    TG, I don't have that problem since I do online sales and type all day long.

    And use Aquaphor as often through the day that you can.

    Using hand sanitizers really don't make things easier, either!

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2020

    Yep..hand sanitizer plus Xeloda are the culprits..

  • snooky1954
    snooky1954 Member Posts: 850
    edited October 2020

    My heart bleeds for all of you having so many SE's from this drug. I was on it for 9 mos and besides fatigue never had any SE's. Zeloda killed off some very small bone mets, but other than that just kept my cancer at bay. When my breast tumor started to grow he took me off.

    I asked if we could just raise the dose. And he said " it would not help, you don't need high doses" just gives you more SE's!! humm

    So now I'm on A/A. Haven't been on long enough for a scan.

    JUST my theory as to why I did not have HF. I have Raynaud's Disorder which is low blood flow to hands and feet. When I go out in winter uncovered it feels like frostbite. Miserable.

    Wish all you guys the best. Although, I didn't post often I do think/pray for each and everyone.


    God Bless

  • denny123
    denny123 Member Posts: 1,528
    edited October 2020

    I had problems when I washed my hands before my meals, and then always immediately applied lotion.

    Rather than tasting Aquaphor, I bought coconut oil and use that since it is edible and kind of yummy anyway.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2020

    Hi Snooky..I have Reynaud's Syndrome. I understand you completely..anything cold triggers it. I find myself either sitting on my hands in cold rooms or wearing gloves in grocery stores. I carry those instant heat pads everywhere..

    p.S. what dosage were you on before breast tumors grew?

  • snooky1954
    snooky1954 Member Posts: 850
    edited October 2020

    Hi Sandy, I was on 2500 x2 then because all I did was sleep day and night, I was dropped to 2000 X2.

    My body had trouble detoxing from it and once I had to take a 3 week break. It just wasn't the drug for me. Best wishes for you. Hugs

  • elenas401
    elenas401 Member Posts: 170
    edited October 2020

    Hi Snooky1954: Were you on the ibrance thread? You sounded familiar. You sounded like Xeloda didn't work as well on your breast tumor. I hope that's not typical as my progression lately has been in my primary tumor. I'm on my third day of X. So far, just maybe a little fatique. I hope your new treatment works well for you.


  • Pamela23
    Pamela23 Member Posts: 394
    edited October 2020

    Elenas, I'm on my 4th round and have had different side effects each time. I wrote down every day what they were so I could see a pattern and stay ahead of any. Days1-4 on my first round was great. I ended up with fatigue & constipation by the end of the 7 days which was no big deal. The second round, when my MO upped my dose to 3000 from 2000, I got H/F starting on Day 5, 3rd round H/F on Day 4. Both put me on the couch for a couple days. This time my MO decreased down to 2000 and I'm on Day 5 with no problem but have noticed other things like achiness & fatigue. So just keep a journal for a bit and see what happens. I think the anxiety of taking the pills are worse than the actual pill itself.

  • Pamela23
    Pamela23 Member Posts: 394
    edited October 2020

    Also, those with dx liver mets, did anyone else have their liver "infiltrated with nodules" so they weren't a candidate for local treatment? I jumped right to Xeloda because I wasn't a candidate for local tx and was wondering how common it was.

  • deanders
    deanders Member Posts: 61
    edited October 2020

    Hi all! Haven't posted in a little while - I've been working from home and trying to help my daughter with remote learning. Been a bit crazy around here.

    I just started my third round on 3000mg 14/7 and I can definitely tell the SE's are different every time. This time around I have had a little tightness in my chest and the muscles around my ribs, but that may be from the mastectomy on that side. It was still healing when I was diagnosed with a recurrence and since the lymph node in my neck was swollen - I avoided my exercises. Not a good idea. I am just fine tuning when I take my doses because it is really hard to get them down with food in the morning as I have never been a morning eater. And I have switched my diet to all plant based so that makes it even tougher to find something I can stomach. So this round I decided to take it at 9am/pm but just have a small snack with prior to taking it. So far so good. I have been more fatigued this time around, hoping that resolves after the first few days. And I noticed that I am sleeping really deeply but usually wake up feeling startled, which is a bad way to start the day.

    My emotions are still hit and miss. I am really still struggling with acceptance of this and keep feeling like I'm doomed. I have no good evidence of that (that's my counselor talking) but I still am not ready to spend the rest of my life balancing side effects and fear with the things I want to do. I have an appointment this coming Wednesday with my oncology team for a check in - hopefully there will be good news. Last time I went my TM's had dropped significantly but that was the first blood draw since we established a baseline. So this coming appt will be more telling on which direction things are going for me.

    For those of you who have been on X for awhile - how long was it before you were certain if it was the right drug/treatment for you? I know it is always a tenuous balance that can change in a minute but it would be nice to know what direction things are headed so I can have a little faith.


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2020

    Pamela23, in 2016 I had widespread liver mets (scattered starry sky and lesions) in both lobes. Progression in 2020 also widespread, both lobes.

    Y90 was under discussion, but holding to see how systemic chemo does. Not a candidate for anything else due to numerous lesions.

  • mls1
    mls1 Member Posts: 73
    edited October 2020

    I have a few mets on the left side of my liver, one was 7.2 cm but was told I was not a candidate for surgery because of how spread out they wer

  • denny123
    denny123 Member Posts: 1,528
    edited October 2020

    Pamela-I have been on X for 2 3/4 years and I still can't predict what will happen when. My problem is with my toe-pits splitting, or sore and red toes, etc.

    What kind of local treatment are you talking about for your liver? My liver was filled with large tumors in 2004, but Gemzar & Herceptin cleared them out in 9 months. You need systemic chemo since your bloodstream has the cancer cells that are constantly circulating.

    Deanders-so glad that you wrote! I am having problems with my intercostal muscles (that wrap around the ribs) tightening. But then my ribs break. My onc has ordered a comprehensive CT scan this time and a bone scan, too.

    Previous scans did not show bone mets, but I do have osteoporosis. He said not to exercise at all, but I am doing gentle stretches, which seems to help.

    I have had 4 rib breakages in 3 years.

    I have been on X for 2 3/4 years, and so far, I have been NED. The next scan will be in Nov; my August scan was denied, which makes me crazy.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2020

    Denny123, I use prolia injections for my osteoporosis every 6 months.

    I also take Citracal, Vit D3, Vit K2 and Mg Citrate to help with bone strengrh.

  • denny123
    denny123 Member Posts: 1,528
    edited October 2020

    Sandi-----I also get Prolia. I have had Osteoporosis/ Osteopenia for over 20 years and have always been on some kind of Bisphosphonate the whole time.

    I take 1260 mg of Calcium and also D3 daily.

    I will ask about Vit K2.

    And I do eat dairy.

    Thanks!

  • divinemrsm
    divinemrsm Member Posts: 6,585
    edited October 2020

    Has anyone else used Cortaid (hydrocortisone) on their peeling fingers? I had a tube laying around and have been rubbin small dabs on my fingertips here and there throughout the day, and I swear its helping. I still have some peeling issues but they don’t seem as drastic, and this is coming off of a week of Xeloda during which they tend to get worse for me. I thought I’d try it since it helps skin issues like eczema and dermatitis. I still use hand creme, too.


  • Pamela23
    Pamela23 Member Posts: 394
    edited October 2020

    Denny123--Since my MO recommended Ca supplementation, I did some research (I'm a registered dietitian so always research my supplements) and found this. Granted, it's from 2013 but still, a review from 16 studies. I do want to point out that your body can only absorb 500mg at a time so space out your supplements. I see most come in a 600mg strength which never made sense to me.

    Abstract

    An unintended consequence of breast cancer therapies is an increased risk of osteoporosis due to accelerated bone loss. We conducted a systematic review of calcium and/or vitamin D (Ca ± D) supplementation trials for maintaining bone mineral density (BMD) in women with breast cancer using the "before–after" data from the Ca ± D supplemented comparison group of trials evaluating the effect of drugs such as bisphosphonates on BMD. Whether Ca ± D supplements increase BMD in women undergoing breast cancer therapy has never been tested against an unsupplemented control group. However, results from 16 trials indicate that the Ca ± D doses tested (500–1500 mg calcium; 200–1000 IU vitamin D) were inadequate to prevent BMD loss in these women. Cardiovascular disease is the main cause of mortality in women with breast cancer. Because calcium supplements may increase cardiovascular disease risk, future trials should evaluate the safety and efficacy of Ca ± D supplementation in women undergoing breast cancer therapy.

    Also....."Calcium can compete or interfere with the absorption of iron, zinc, and magnesium. For this reason, persons with known deficiencies of these other minerals who require calcium supplementation usually take calcium supplements between meals" ().

    From what I understand, the Ca supplements we take are to keep our serum Ca in range so all the mechanisms in our bodies that require Ca will be pulled from the blood serum Ca instead of the bones.

  • denny123
    denny123 Member Posts: 1,528
    edited October 2020

    Pamela-thanks! Very interesting! I do take my Calcium with breakfast and with dinner. My pills do have 600, but that is how they come.

    My other levels are find, since I am constantly having bloodwork done.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited October 2020

    I am starting to think that I am an Intermediate Responder to 5FU..converted from Capecitabine (Xeloda). A slow responder lacks the DPD enzyme and the drug becomes toxic. I was tested for the common variant of the DPD deficient enzyme and it was negative. But there are also other variants that were not tested.

    Yesterday am, I restarted my Xeloda after 7 days off and within 5 hours my feet were very red and burning. My MO said to stop pm dose and will discuss what to do next. This morning, they were back to normal.

    So my guess, I will be dose reduced back to 2000mg/day. If my problem continues, then dose reduce until no longer effective. In the future, I would like to discuss with MO about metronomic dosing of 1000mg/day with no time off. Anyone done that?