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All about Xeloda

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  • letmywifelive
    letmywifelive Member Posts: 303
    edited June 2017

    Thanks Shetland. I replied to you on the liver mets thread. Let's see what the PET scan reveals. Trying to understand why the CT was not definitive since CT usually is very sensitive for detecting soft tissue mets.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2017

    (Responded on liver mets thread.)

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2017

    Have any of you had liver pain upon starting a new treatment? I started feeling it after my second Xeloda dose. Hoping it is a good sign of dying cancer and not a sign that my liver is unhappy with the drug.

  • husband11
    husband11 Member Posts: 1,287
    edited June 2017

    My wife got ascites and hepatic hypertension after starting on xeloda. They thought she was dying. One can only guess as to the reason the drug brought it on, but there was rapid kill off of cancer cells. She had a lot of cancer throughout her liver. Some in discrete tumors, some scattered like buckshot. It may have been an immune reaction to the dying cells. It posed a significant risk to her health. At first they thought it was gas, but it was fluid accumulation in her belly. The xrays they did, were useless and lead them to believe she was constipated. The tapping on her belly, led them astray as well. That fluid is a symptom of hepatic hypertension caused by blockage. Another symptom, and life threatening, is the hypertension causes blood vessels in the area and espophagus to stretch and swell. There is risk of internal bleeding. They put her on blood thinners and a diuretic. Eventually she got a drainage port installed, but by then, the fluid accumulation had slowed. Now it has stopped.

  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2017

    Wow, Husband, your poor wife was put thru the wringer. She's a trooper.

    Good info to know as I have liver mets as well. Xeloda has stabilized them. Hoping for several more months on this stuff Smile


  • husband11
    husband11 Member Posts: 1,287
    edited June 2017

    We took her to the emergency ward. They told her she would not be able to attend our daughter's wedding, and that she should resign herself to using a wheel chair. She's out in the yard right now, tending to the flower beds.

  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2017

    Husband...I'm surprised they said that. How insensitive!!!

    The body has amazing resilience as long as it is still "healthy sick." That's what some ladies in my other group call ourselves. We're not on our death beds, for Pete's sake, and yes, we do have little (or big, as was your wife's case) hiccups that bring us into the ER, but all in all, we're still here and doing pretty well. We're healthy sick.

    We should start our own band, The Oxymorons!


  • husband11
    husband11 Member Posts: 1,287
    edited June 2017

    There are all kinds of people out there in "the system". Some wonderful, compassionate, caring, and others that fail to hold out a glimpse of hope. We need hope, not pessimism.

  • letmywifelive
    letmywifelive Member Posts: 303
    edited June 2017

    Husband11 - I can only imagine how scary the entire episode might have been for you. Great that you are out of it now and Xeloda is working for her.

  • stagefree
    stagefree Member Posts: 360
    edited June 2017

    guess time to resign myself from this thread :/

    Blaming med team, choice of meds is no help I tell ya.

    Since 2012, I've witnessed so much. We are here to support each other.. med staff may also make mistakes (my overdose X giving my heart attack right at first cycle back then), yet I suggest the keeping the "dose" of supporting to the right level. The professional staff prescribe and help, our loved ones live through it all with us, BCO staff provide all possible up-to-date info and platform for support to us.. our conversations here important for not the active ones but lurkers.. please keep positive, bearing in mind each breath is already a gift which these rockstar med options.

    Hugs all ;)

    Ebru

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2017

    I talked to my nurse practitioner who works with my onc. She thinks that my liver pain is a flare reaction, e.g. the drug is working. Yay! Go Xeloda! I am debating whether to proceed with my weekend plans, and refuse to let the pain stop me; or take it easy and honor that my body is putting out some extra cancer-fighting effort right now. Both seem like good options.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited June 2017

    my liver isn't large or painful. I don't feel anything at all. Now I'm worried it's not working.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited June 2017

    I got the idea from the nurse that though this type of flare reaction is not usual with Xeloda, it can happen. Perhaps it has to do with a particular cancer's characteristics. No reason to think that X is not working for you!

  • magdalene51
    magdalene51 Member Posts: 2,062
    edited June 2017

    I am so frustrated by the instructions on taking this med! I'm not one of those people who does well with routines and schedules and stuff. Never have been. I was self-employed most of my career, and now I'm retired, and DH does much of his work at home, we don't sit down for 3 meals a day, ever. Most days, not even once. I've never been 1) a breakfast eater 2) a water drinker. I don't get hungry until about 3 in the afternoon, and I gag at the taste of water. I was able to stay hydrated through chemo/rads with lemonade lightly carbonated with SodaStream. It's still the only thing I drink. So 8 ounce of water is like - just tell me I have to chug toilet cleaner! As far as taking it with or 30 minutes after a meal: define meal. We don't have meals in our household. So I don't know if what I'm eating qualifies as a meal. Ebru says, 12 hours apart exactly. I don't do anything 12 hours apart exactly! So I end up taking it late at night after drinking an Ensure (PA said that would work). It would help to know the why behind some of the instructions just so I know I'm doing an adequate job. Suffice it to say this med has been a major challenge for me, for all the wrong reasons! And there's nothing in any of the documentation I've found that says anything about milk.

    Please don't take this as anything but a plain old rant! Otherwise, thank you for all the info. I'm off to take a nap.

  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2017

    magdalene, I've had similar frustrations with making myself eat an early breakfast (which doesn't always happen), as well as with the water. But trust me, you DO NOT want to skimp on the water. I did, because, as you said, it just doesn't taste right, and I ended up in really bad shape with an E.coli infection, exacerbated by severe dehydration, which is something you have to be very careful about with X. Evidently, we are all exposed to and have E.coli and other bacteria in our bodies all the time, but when our immune systems are compromised and then we don't get enough water to wash the bad bacteria out, it can go haywire very quickly and make us really, really sick. I've found I am able to tolerate mineral water better than plain water. I've also been adding things like lemon and/or cucumber to water, to make it more palatable. But whatever you do, do not let yourself get dehydrated, which can happen surprisingly quickly.

    I also think, while it's a good idea to space our med doses out, taking them exactly 12 hrs. apart is very difficult for most of us, and unnecessary added stress. These days I have a piece of whole grain toast with some cheese or almond butter, just to get the darn pills down. I think it's just important to have something in your stomach to help with absorption and to minimize any possible nausea or other tummy distress, but I wouldn't worry about a big meal if that's hard for you to do. I am also a firm believer in the benefits of matcha green tea, and don't plan to give it up without research evidence to the contrary, which I'm certainly open to if anyone is aware of it.

    We're all different, but I'm also not a fan of Ensure b'cuz it's full of sugar and chemical vitamins, which can be stimulating, but not necessarily nourishing.

    Shetland, I'm glad your NP thinks what you're experiencing is tumor flare. I have the same thing and am pretty sure that's what it is, especially since my TMs dropped significantly my first X cycle, and I also had that going on.


  • letmywifelive
    letmywifelive Member Posts: 303
    edited June 2017

    dlb823 - On the topic of tumor markers, my wife's TM dropped by almost 100 points over a period of 2 months and the latest CT scan shows something that "maybe" progression. Waiting for a PET/CT to confirm one way or the other. I am really puzzled by what's happening as TM numbers have been extremely predictive for her so far.

  • girlwithacurl
    girlwithacurl Member Posts: 85
    edited June 2017

    I operate pretty in a pretty similar way to Deanna. I have a piece of bread with nut butter or avocado in the morning and it seems to be enough to take the X with. I don't always manage to be precisely 12 hours apart but somewhere around there, usually between the 7-8 am/pm hour. And I also am a huge fan of matcha and drink it everyday. I would be crushed if I had to stop drinking it. My markers are dropping too.

    Letmywifelive, that must be so frustrating and scary for both of you to have to question your usually on the mark TMs. I do hope it does not turn out to be progression.

    I love fizzy water and have looked and looked to see if it is equally as hydrating as regular water. I still haven't found a definitive answer but hydrate anyway you can!

  • Nel
    Nel Member Posts: 597
    edited June 2017

    Same here with how and when I eat.  When my kids were younger, we had very clear meal times.  Now with my son out on his own, daughter working and me being divorced - I eat when I want. Have to force myself to have something in the Am before I leave for work    exactly 12 hours apart - not a chance   I always drank a lot of water s o OK with that     Just when I get the routine down - it is my week off LOL   

    In my second cycle so far so good..  Some constipation and itchy palms but managing    first scan will be sometime in Sept 

  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2017

    Because I consider all shared advice here seriously -- especially because some oncs have far more science education than many of us do -- I've been looking around a bit to see if I can find anything to indicate that possibly it isn't wise to drink green tea while we're on Xeloda. And I've come up with some links and a question...

    First, the section on herbal products within MSK's website is my go-to resource for balanced info on anything herbal because they always list both proven and unproven but possible benefits, as well as any concerns...

    https://www.mskcc.org/cancer-care/integrative-medi...

    Within that listing... under For HealthCare Professionals... Herb-Drug Interactions... There are several meds listed that green tea may interfere with, including Tamoxifen. The one entry that I have a question about is this one: "Cytochrome P450 3A4 substrates: Green tea extract inhibits CYP 3A4 enzyme and can affect the intracellular concentration of drugs metabolized by this enzyme."

    So... does anyone know if CYP 3A4 (which looks somewhat familiar to me -- maybe b'cuz I've seen it associated with Tamox?) might be involved in Xeloda metabolization? Or if any of the other pathways noted as possibly being affected by green tea might be a concern? I love reading this stuff, but science is not my forte, so I'm hoping someone else has a lot more knowledge in this area and can help.

    PS ~ I meant to add this link too. https://www.ebmconsult.com/articles/medications-in...


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited June 2017

    Magdalene, I too am a camel who doesn't eat breakfast. I take my morning X with coffee and a light bite (usually something akin to a granola bar).

    Also not one for schedules, I take my evening X sometime after dinner..could be a minute, could be an hour or two later. I have taken to setting a phone alert to remind me. Forget counting hours, I'm happy if I dont forget completely.

    I don't think you are alone in this approach. I eat relatively healthy, but I take no vitamins or supplements, and although I don't drink enough water (already know that), I exercise and live the best way I can handle . I think that's all any of us can do.

    :

  • magdalene51
    magdalene51 Member Posts: 2,062
    edited June 2017

    Well, bless you all for your responses! It really makes me feel so much better to know I'm not alone in this. Right now I'm dealing with some extra stress, as I had to have all my teeth removed. I have temporary dentures, and I will be getting implanted posts to retain them so I don't have to mess with glue. Right now I'm going through a period where some bone splinters are working their way out of the gum, and the dentures rub painfully when they do. In any case, I can't find anything that will keep the lower plate in place when I eat; it comes loose and floats out - especially embarrassing when eating out! I'll be getting my lower posts in a couple of weeks, so I should be able to eat better then. In the meantime, it's a good thing when a cereal is soggy with milk! Life is a good one to get something in the tummy for breakfast. I've had very little nausea. Is the consensus here that the water is for hydration? If that's the case, I can drink liters of my lemonade. DH mixes it for me daily and doesn't add a lot of product or carbonation so it's nice and light.

    Again, thank you all for not throwing me out of the room for my rant!

  • Mimi2kleh
    Mimi2kleh Member Posts: 62
    edited June 2017

    You are not alone.I'm sitting here, nauseous, and trying desperately to think of something I can force down, so I can take my dose, which is three hours late.

  • husband11
    husband11 Member Posts: 1,287
    edited June 2017

    From Roche Monograph:

    https://www.accessdata.fda.gov/drugsatfda_docs/lab...


    Drugs Metabolized by Cytochrome P450 Enzymes: In vitro enzymatic studies with human liver microsomes indicated that capecitabine and 5'-DFUR had no inhibitory effects on substrates of cytochrome P450 for the major isoenzymes such as 1A2, 2A6, 3A4, 2C9, 2C19, 2D6, and 2E1, suggesting a low likelihood of interactions with drugs metabolized by cytochrome P450


    Cytochrome P450 2C9 Substrates: No formal drug-drug interaction studies with capecitabine and other drugs known to be metabolized by the cytochrome P450 2C9 isoenzyme have been conducted. Care should be exercised when XELODA is co-administered with these drugs.


    From another source:

    http://theoncologist.alphamedpress.org/content/12/...


    Drug and Complementary and Alternative Medicine Interactions

    Clinically, the most important interaction between capecitabine and other drugs is with coumarins [4]. Capecitabine inhibits CYP2C9, which isozyme is the main oxidizing enzyme for coumarins. Patients on coumarins should be monitored frequently or changed to low-molecular weight heparin anticoagulation during therapy with capecitabine.

  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2017

    "Coumarin exposure is common via cinnamon, green tea, sweet clover honey, and other foodstuffs."

    http://www.sciencedirect.com/topics/page/Coumarins

    Coumarin enriched green teas???

    http://www.sciencedirect.com/science/article/pii/S...

    So I'm finding green tea cited as possibly (?) containing coumarins, but I'm not sure from Husband11's links above if it's the capecitabine that inhibits coumarins meds (which doesn't sound like it would be a problem unless someone is on one of those meds), or vice versa.

    Hmmm......


  • stagefree
    stagefree Member Posts: 360
    edited June 2017

    hi DLB,

    The one who said no to green tea is a top notch oncology nutritionist.. Receiving the news back then, I said Incould live without the green tea and have camomile instead.

    Of course, I am listing some very specific stuff on the boards (which I paid for, maybe my bad ?) but then I think, if I have these resources, top notch docs (don't underestimate Turkiye- we are at the heart of the world, accessing all med info right away) I say to myself, why not share?

    Have been doing so for the last 5 years, only here, without any expectations other than a thank you, it helped.

    I gained a few great friends, some of whom also visited Turkiye.

    Ahhh.. I am muslim, but not El Kaide.. :)

    Anyway, guess I've shared enough anyway .. 5 years of Xeloda experience talking, not even taken into consideration, many asking each other Xeloda 101 questions..

    Guess I've paid back my due of sharing what I've learned from the boards. Ones interested in the info can always reach them :)

    I suggest everyone do read BCO links, past threads before randomly creating new ones.

    And the bad police shut up.

    Hugs & bye

    Ebr

  • dlb823
    dlb823 Member Posts: 2,701
    edited June 2017

    Ebru -- yes -- we all value your experience! That's why I want to understand about green tea, and because I am quite addicted to it! And I had a feeling whomever told you not to drink it was basing that recommendation on something scientific, even though it's not common knowledge in the US. On the other hand, I am happy to know that artichokes are good for us, and I plan on enjoying a lot of them!

    Mags, with the dental issues, are you or have you recently been on a bone building drug? Your comment about bone splinters made me wonder if you have anything else going on, besides whatever damage was caused by the extractions. I'm so sorry you're dealing with this on top of mbc! Not fun!



  • Lita57
    Lita57 Member Posts: 2,338
    edited June 2017

    Ebr, I appreciate all that you've shared here, and I'm sure others do too.

    I don't drink very much green tea...i rotate my teas: decaf black, Earl Grey, green or red rooibos, honeybush, chai, hibiscus, etc. I don't drink chamomile very much because it's not good for people with ragweed and certain other plant allergies.

    With that in mind, is it ok to drink green tea on "off cycle" weeks?

    Regarding milk and milk products, I was told by MO to consume them because of my mild osteoporosis. Yes, you can get calcium from broccoli and other greens, but some vegetables really bother me when i'm taking X, and the calcium pills upset my stomach. Diarrhea has been a major problem for me with X, even on the 7 on 7 off schedule. (I haven't been able to leave the house for 2 days because I'm currently having another diarrhea episode.) I don't like to keep taking imodium because it plugs me up too much, then i have to take stool softeners, then the diarrhea comes back, and it just turns into a vicious cycle. Anyway, dairy helps me slow things down and stay regular.

    As I've said, I've been on X for over a year, and it must be doing something because I've only had some progression...not enough for the MO to consider switching to a different chemo yet.

    I'm going to ride the X train for all it's worth. I find it pretty easy to take (other than the fatigue and diarrhea). The HFS is manageable, and I still have some hair left.

    Take care, my friend.


  • Emily-Louise
    Emily-Louise Member Posts: 26
    edited June 2017

    Hello, is anyone on Xeloda and Navelbine Combo?

    Just coming off 10 months of Taxol/Carobo/Veliparib Combo after progression in my liver, in fact tumours doubling in size in just 4 weeks :(

    Just hoping I can manage the side affects, any tips would be greatly appreciated!

  • husband11
    husband11 Member Posts: 1,287
    edited June 2017

    https://www.ncbi.nlm.nih.gov/pubmed/27518169

    CONCLUSION:

    Previous reports had predicted that plasma EGCG concentration reached 7.4 µM after ingesting green tea having high concentrations of catechins. That concentration of EGCG is equivalent to one-half to one-third of its Ki value for CYP1A2 and CYP3A4 in this study. The ingestion of beverages containing large amounts of green tea catechins together with drugs that are metabolized by CYP1A2, CYP2C9, and CYP3A4 should be avoided. This article is open to POST-PUBLICATION REVIEW. Registered readers (see "For Readers") may comment by clicking on ABSTRACT on the issue's contents page.

  • husband11
    husband11 Member Posts: 1,287
    edited June 2017

    According to the Roche Monograph, xeloda uses the named pathways, including cyp2c9, but doesn't inhibit them. On the other hand, the above research on green tea, shows that it does reach concentrations that could inhibit cyp2c9 to 50%, and therefor should be avoided with drugs that use those pathways. My thought would be to only take green tea during time off xeloda. That is the strategy my wife has used for various supplements that could potentially interfere with xeloda.