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All about Xeloda

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Comments

  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    Kessala,

    Side effects for my wife started 2 months into her 7/7 schedule.

    I think the the concepts of cumulative side effects and delayed side effects, go hand in hand; in other words they are two manifestations of the same mechanism that the drug utilizes: first it goes from capillaries to outside of capillaries and into sweat glands; then it comes to the surface through the sweat glands; then it deposits into the skin; then it accelerates the rate at which skin cells die.

  • Lovestosing
    Lovestosing Member Posts: 49
    edited April 2016

    Hi Niccij. I used to take an antidepressant which was to help with my Fybromyalgia but I stopped it before my breast cancer came back - I was 9 years free before I got diagnosed with Stage IV last year. I felt it didn't really agree with me. I manage pretty well on the chemo. I did struggle with pain in getting my port accessed but Emla cream put on the area one hour before access works wonders!

    I agree with others that the effects of Xeloda are cumulative. I had to get my dose reduced at the end of cycle 2 as my feet were so sore, and stingy I couldn't bear to shower. The effects on my hands have increased with each cycle. Even with creaming my hands often, It's now painful to open jars and bottles or carry heavy bags. I am hoping that the drug works as I had a bad scan in Feb with liver lesions back after being six months NED,pleural efusion back and cancer on the lower lobe of my left lung. I feel Xeloda is working as I no longer have chest pain when I walk at a reasonable pace and I was jogging on the gym treadmill before my feet got sore! My scan in mid May will give me the true story of how Madame X is working - sore fingers and toes crossed!


  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    gciriani, please do not use cinnamon or ginger on compromised skin! These substances have essential oils which carry heat energy-- one drop of oregano can actually be painful on the skin, causing burns. Also, as to using things already in your kitchen or household, the substances (spices, herbs, teas, etc) from which the essential oils are derived may not have the same effect as the essential oils distilled from them would have.

    leftfoot-- re MTHFR: both variants of the polymorphism affect folic acid methylation. People with MTHFR should never consume folic acid because our bodies do not methylate it and it builds up in our systems causing all kinds of havoc, including elevated homocysteine levels. We need methylated B vitamins instead-- methylfolate and methylcobalamin for B12. For more information, go to www.mthfr.net. Lots of info there.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited April 2016

    I have been on Xeloda since May 2015 on a 7/7 cycle, 3500 mg (4 pills am and 3 pills pm). I have noticed HFS this past month has been much worse - dry, cracked feet and blisters on big right toe and dry, sore hands. I also have waves of nausea on and off, which I have had since the beginning. I do seem to feel worse on my "off" week.

    My tumor marker # (has been very accurate for me) has decreased 57% so far since I started Xeloda. Still very far from normal range but so far going in right direction.

    This chemo is much more tolerable than the other IV chemos I have been on, so praying I can be on this a long time!

    Really thankful for this thread - very informative and love hearing the tips that work for others!

    SS (Sorthernsurvivor)


  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    I definitely feel my worst the two days after an on-week ends. I figure that is when the highest accumulation of Xeloda is in my system. So I keep all the Days 8 and 9 greyed-out on my calendar because I know those are going to be low octane days.

    This sweat angle we've been talking about here is interesting. This may be TMI, but I have noticed that I want to shower more toward the end of an on-cycle. I sweat more in my sleep, and my body odor changes and intensifies. I noticed this a long time ago. Perspiration is one of the body's primary ways of trying to rid itself of foreign toxins and free radicals. So I began to be more intentional about washing my sheets on Day 8 and washing my pajamas daily. I don't use much body lotion during a chemo week because I want my skin to breathe, and I skip antiperspirants at night so my skin is not holding back on driving the toxins out.

    Also... my hair is super thick, and my scalp sometimes sweats at night. I have noticed that if I don't wash my hair regularly during a chemo week, I get a strange buildup on my scalp. I've never had dandruff before, and besides, it's not exactly like ordinary dandruff, in that it doesn't collect on my shoulders or the back of my shirt. I just see flaky stuff right on my scalp, and if I brush vigorously, I can see it in my hair.

    TMI, like I said. But I have started being more intentional about getting the sweat off my skin faster, also changing my beddings and clothing more often.

  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    Lulubee,

    Thanks for the warning! In effect I was reading in a reference* from that study, that

    • inappropriate application of antioxidant substances (concerning their concentration and composition) might induce harmful effects, the consumer will definitely benefit from physiological concentrations and compositions of antioxidants.


    Following on your idea that Vicks VapoRub helps, perhaps because of antioxidants contained in its components, I looked up a few others of the creams that some of you say are helping, and all seem to contain antioxidants:

    • Aloe vera
    • Udderly smooth
    • Urea cream


    Note*:
    Lademann J, Patzelt A, Schanzer S, et al. Uptake of antioxidants by natural nutrition and supplementation: pros and cons from the dermatological point of view. Skin Pharmacol Physiol. 2011;24(5):269-273. doi:10.1159/000328725.

  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    Lulubee,

    If the hypothesis of getting rid of capecitabine metabolites that have gone in the sheets through perspiration holds, then perhaps changing the sheets before the end of the on cycle might be even better. It would have to be experimented with, to see what works best.

  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    A followup thought, because now I'm worrying about you all while I cook dinner:

    For any newbies who may be reading this thread, I feel like I should clarify that while I said I shower more during a Xeloda week, I do NOT mean I take long showers. I mean I take some extra quick rinse-off showers.

    I wouldn't want someone taking lots of long showers and then having half their foot skin fall off, based on a misunderstanding of something I said here. Sheesh.

    Long exposure of hands and feet to water is always a definite NO NO on Xeloda.

    Okay, I feel better now. Back to grilling sausage and seasoning the peas. ;-D

  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    gciriani,

    Well, the sheets usually get washed every weekend regardless, but Day 8 is a mental hook for me, just a planned extra laundering. That particular day is not carved in stone for any scientifically proven reason-- I just figure that's the day after the last dose, so it's when the accumulation is at its highest.

    Some of my fussing over this is also for the psychological boost. Once I take that last dose, I just need to give myself a gold star (and clean sheets are awesome, right?), to mentally turn over a new leaf and welcome the beginning of a week off. It's like spring cleaning-- it just makes you feel more peppy and freshened up for better days ahead.

  • Purplegurll
    Purplegurll Member Posts: 89
    edited April 2016

    Well ladies, I'm leaving you. Had a PET, my first since starting xeloda in January. Xeloda did not work for me. Most of my lesions have grown/ increased in activity and I now have new spots to bone, new lymph nodes, and a haziness showing in my lung. Trying to figure out next steps now. Wishing you all much success with Xeloda. Take care everyone!

  • JFL
    JFL Member Posts: 1,373
    edited April 2016

    Purplgurll, I am sorry to hear that Xeloda didn't work for you and that you must leave this group. There are many other meds that can help. Did your doctor talk to you about what treatment is next? I see from your signature block you are triple negative so I assume you will be doing another chemo? I hope your next treatment kicks some BC booty!

  • JFL
    JFL Member Posts: 1,373
    edited April 2016

    GCiriani, I would definitely be interested if you find out more info about that topical application from the study for HFS. When I reordered my Xeloda today and the specialty pharmacy asked me if I had any questions for the pharmacist, I was tempted to ask about it. However, I didn't have any of the info or details on hand and therefore, didn't bring it up.

  • babs6287
    babs6287 Member Posts: 1,619
    edited April 2016

    Purple girl-sorry you're leaving us ands wishing you great success on your next treatment.

    BaBS

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited April 2016

    purple girl- best wishes. I'm sorry xeloda didn't work for you. Ian hopeful there is something that will help beat back that cancer. Hug

  • NicciJ
    NicciJ Member Posts: 73
    edited April 2016

    Omg, Kessala! That's terrible! I hope yours don't get that bad anymore! So far mine are just a little pink having done only the one cycle. I will start the 2nd one on Friday. I am really dreading it after the week I had last week.

    Lovetosing, that is wonderful that you are not having too terrible of issues with your fibro during all of this! You are so lucky!! Ugh, I am in bed almost all of the time and on pain meds all day. Not fair that people that have cancer have to have fibromyalgia too! It's just too much!! :/ Just had to vent there.... Now, the "bad" scan that you had with the return issues--were you on Xeloda for a while before that scan or started Xeloda after that bad scan?

    I agree with Southernsurvivor that this is a great thread with so many wonderful informative people on it! I am sooooo thankful for this entire discussion board. Lots of different threads for any kind of support you could possibly need.

    Purplegurll....so very sorry Xeloda did not work for you! I know how you feel... I just hopped over here couple weeks ago because Ibrance didn't work for me, but seemed like it was everyone else's miracle drug. Hang in there! On to the next!

  • RosesToeses
    RosesToeses Member Posts: 244
    edited April 2016

    Purplegurl, very sorry to hear Xeloda wasn't the right drug for you.  Wishing you the best with the next one! 

  • Purplegurll
    Purplegurll Member Posts: 89
    edited April 2016

    Thank you everyone for the warm wishes. JFL, itsounds like next treatment will be either abraxane or a clinical trial. I should know more this week. Hoping xeloda keeps working for you all.

  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    I was able to obtain the composition of the HFS ointment from Medac, GmbH, the German company that provided it for the study.* The name of the product is Elima, and the product page shows that it has been created just for HFS caused by chemotherapy. They have a US subsidiary, but my guess is that they work on different products, or that Elima has not been certified yet to be marketed in the USA.

    The product composition shows: Isopropyl Myristate, Steareth-2, Steareth-21, PPG-15 Stearyl Ether, Butyrospermum Parkii, Glycerin, Magnesium Aluminium Silicate, Xanthan Gum, EDTA, Acrylates/C10-30 Alcyl Acrylate Crosspolymer, Sodium Hydroxide, Decamethylcyclopentasiloxane, Borago Officinalis Seed Oil, Calendula Officinalis Flower Extract, Antioxidant Complex 5, Panthenol, Tocopheryl Acetate, Camellia Sinensis Leaf Extract, Aqueous Hippospongia Extract, 2-Bromo-2-Nitropropane-1,3-Diol, Aqua.

    Note*:

    Lademann J, Martschick A, Kluschke F, et al. Efficient prevention strategy against the development of a palmar-plantar erythrodysesthesia during chemotherapy. Skin Pharmacol Physiol. 2014;27(2):66-70. doi:10.1159/000351801.


  • Lovestosing
    Lovestosing Member Posts: 49
    edited April 2016

    Hi NicciJ

    I started Xeloda as a result of the bad scan. When I got diagnosed with Stage 4 in Feb last year, I did FEC infusion chemo until June

    I managed to get NED on this for a few months and I went on Exemestane. Unfortunately, the Exemestane didn't hold things and by Oct there was a suspicious spot on my liver. As the CT was not clear enough and they could not confirm that the spot was cancer, I had to wait until my next scan in January which showed that it was back in earnest! It was then I went on Xeloda. I am hopeful that it is working. Hopefully it will work for you too! Sorry to hear how tired you are with the effects of chemo and Fybromyalgia. It really isn't fair! I wish there was something more that could be done to ease things for you. Take care
  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    Hmm. The first half of that list of ingredients is mostly emulsifying esters, a clay-derived filler, and a silicone. All stuff used just to give the cream body and texture. EDTA is an endocrine disruptor-- often on lists of ingredients to be avoided in ER+ populations. Interesting. Sodium hydroxide is basically lye, which can burn skin. Curious why it's included.

    Then further down the list you start seeing the good stuff. Butyrospermum parkii is simply shea butter-- terrific stuff. Glycerin is good. Borage seed oil, calendula-- both awesome for healing skin. There's a B vitamin and Vitamin E. Camellia extract is from green tea. Then at the end there's that marine sponge stuff, which is a powerful antimicrobial and anti fungal agent. Marine algae is a big skincare whooptidoo these days, and has similar properties.

    Mostly, though, I think the main active ingredient is the one that is concealed in mystery, because it's probably proprietary: Antioxidant Complex 5.

    However, look what I found. Something called Antioxidant Complex T-5, which you can buy for less than $6 an ounce. It contains: Water, Glycerin, Gingko Biloba Leaf Extract (and) Olea europaea (Olive) Leaf Extract (and) Aspalathus linearis (Rooibos) Leaf Extract (and) Camellia sinesis (White Tea) Leaf Extract (and) Camellia sinensis (Green Tea) Leaf Extract

    And I think that is probably the magic.

    So if you wanted to tinker around with a DIY version... you could add an ounce of that T-5 complex to some shea butter and borage seed oil. Squeeze in some calendula cream. Add a couple opened capsules of vitamin E oil. Personally, I would put in a few drops of frankincense and myrrh essential oils.

    For the marine aspect, you could add a serum made from marine algae and essential oils like this one by OSEA or this one. Or something by AHAVA.

  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    Lulubee,

    That's great, thanks for all the info. I'll give it a try. One ingredient that may be important is the clay filler: research articles* explain that the ointment has porous micro-particles loaded with antioxidants; the size of the particles is important to stay in the pores of the skin and release the anti-oxidants.

    Since you are brilliant about understanding the ingredients and the biochemistry involved, I was wondering if you could take a look up at a uridine-based cream that I searched in the past and that I compounded at home for my wife to counteract HSF. I made several posts before you joined this thread, and below are two of the articles illustrating it.**

    Note*:

    1. Formation of a protection film on the human skin by microparticles - Lademann - 2008 - Laser Physics Letters - Wiley Online Library. http://onlinelibrary.wiley.com/doi/10.1002/lapl.20.... Published 2008. Accessed April 15, 2016.
    2. Lademann J, Richter H, Golz K, Zastrow L, Sterry W, Patzelt A. Influence of microparticles on the homogeneity of distribution of topically applied substances. Skin Pharmacol Physiol. 2008;21(5):274-282. doi:10.1159/000148043

    Note**:

    1. Irena Netikova, Agnes Petska, Juergen Barth. Recent clinical studies with uridine cream. EJOP. 2009;3(2):22-23.
    2. Hartinger J, Veselý P, Matoušková E, Argalacsová S, Petruželka L, Netíková I. Local treatment of hand-foot syndrome with uridine/thymidine: in vitro appraisal on a human keratinocyte cell line HaCaT. ScientificWorldJournal. 2012;2012:421325. doi:10.1100/2012/421325.
  • NicciJ
    NicciJ Member Posts: 73
    edited April 2016

    Lovetosing...thanks for letting me be so nosy!

    Lulubee...you are amazingly smart with all those ingredients! I am so impressed!

  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    gciriani, you flatter me. I know some things about ingredients because I've practically made a hobby out of skincare in these eight years with ER+++ BC (this zero estrogen ring of Hades pretty much nukes all midlife vanity), and because I am inclined to fall down the google hole when I should be writing or getting some beauty sleep (see: estrogen ring of Hades).

    But no, biochemistry is not in my wheelhouse. My adult kids would howl if they ever heard anyone suggest their mother is a chemistry buff. I have been known to say that it is surely a sin of some magnitude to mix letters with numbers.

    YMMV. :-D

    I do not have access to some of the studies you linked, and I could not see that the other one offered an ingredient list. Did the uridine cream help Debra? Did you get access to the ingredients? Did you have it compounded or did you whip it up yourself?

    "Curiouser and curiouser," cried Alice.


  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    Lulubee,

    The uridine recipe is basically any good hand-cream mixed with 10% uridine. I compounded it myself using Cetaphil and buying uridine as a nutritional supplement from Amazon (enough for a 3-week supply), and later on buying larger quantities (enough for a 90-day supply) from chemical-lab suppliers. My wife's symptoms went down one notch with it. SusaninSF, who followed my instructions (and who found less expensive suppliers) had some partial success with it, but I think she may have moved on to other products. Another couple people here also tried it, but I do not have feedback from them. (if you search by keyword uridine and member name gciriani, you will come up with more discussions).

    For the article you could not access, here is the link: Influence of microparticles on the homogeneity of distribution of topically applied substances. For articles that are not freely available, I go to my local university hospital library and download it from there. If you need anything else, please let me know.

  • babs6287
    babs6287 Member Posts: 1,619
    edited April 2016

    I didn't realize how hard it would be to make my holiday dinner. My hands and feet are a mess- thank god this is my week off!!! Or it could be much worse. Cutting fruits and veggies etc is not easy. Boy the things we take for granted sometimes. I'm thinking this could be the last time I cook a whole holiday dinner for a long time which really bothers me. I hate not doing what I normally do! Feeling very frustrated today. Sorry for venting but ......

    Babs

  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    My Breville food processor has been my saving grace. And good thick rubber gloves.

    Sorry you're having such a hard time, Babs!

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited April 2016

    Babs,

    Preparing the Pesach meal is not for the weak. I am so sorry that you are having a rough time with all the chopping, dicing, and prepping. I wonder if I can do Thanksgiving next year, which is my big holiday.

    Chag Sameach.

    *susan*

  • NicciJ
    NicciJ Member Posts: 73
    edited April 2016

    Hey, don't feel bad about venting! That's what we are here for. Vent away my friend! ;)

  • babs6287
    babs6287 Member Posts: 1,619
    edited April 2016

    Thank you Niccu lulu and Susan. Last night was really great. My guests were so very helpful. My nephew stayed after everyone left to clean up. He's such a sweet young man!!!! The food was amazing. To help I put the udder cream on my hands and feet. Then I wore cotton sox and gloves and wore plastic gloves over that! And of course my DH is a terrific help. Wednesday AM he woke up an hour earlier to peel, cut and dice my ingredients for my chicken soup. I'm old school. I don't use the food processor or bring in any of the food

    But the next holiday I'll just bring in part of the meal. It's time to accept my limitations😢😢

    Babs

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited April 2016

    Babs, sorry for your bad day. I know I'm wondering what canning season will bring for me. Glad your day ended up better.

    I have start back up with Madame X on Monday. Going back to 6 pills, I just can't handle 7. I've been off for 8 days, and things are just now starting to get a tad better. My legs, arms and chest are so dry, so scratching this rash is almost like scratching raw skin. And it is a bit scabby. I'm not gonna live like that. I am also going for a medical marijuana card on Monday and try some edibles. I'm grasping at straws to stay alive!

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