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All about Xeloda

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Comments

  • Kessala
    Kessala Member Posts: 91
    edited October 2015

    Yay, Sandilee!

    Great news! Xeloda has been good to me too. Hang in there!

    Kessala

  • 3Holly
    3Holly Member Posts: 201
    edited October 2015

    Sandilee, congrats on your scans, so glad Xeloda is working for you!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited October 2015

    Sandilee that's great news! It's moving in the right direction.

    So, I'm leaving again back to Ibrance. Scan and MRI show no change since I started 6 months ago. Since my cancer is indolent (thank god for lazy cancer cells!) he is not in a hurry and would like to save the Xeloda as ammo for a later date. Scans again in 3 months and we just keep watching..scan to scan. I'm still following this thread and will pop in here and there. Bye for now ladies!

    Stefanie

  • gciriani
    gciriani Member Posts: 195
    edited October 2015

    3Holly,

    I was traveling and I had overlooked your your question about pain: capecitabine (Xeloda) doesn't decrease pain to the bones. The pain is caused by hairline fractures which in turn are caused by the bone metastases. Any hairline fracture hurts regardless of the cause: whether it was a fall (anybody ever broke a rib?) or it was bone metastasis. What really helps to get rid of the pain is healing of the fracture. Zometa helps with the bone pain, by helping rebuild bone.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited October 2015

    Many here have donated . Thank you !........Wandering around and cheerleading again :)


    Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs :)

    image

    https://community.breastcancer.org/forum/110/topic/834331?page=1

    Link to the mainboard donation page

    https://secure3.convio.net/bco/site/Donation2?df_i...

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited October 2015

    Saw my oncologist today. She is upping my dose of Xeloda since I am no longer on Tykerb. I guess while on that drug, you lower the dose of Xeloda. I will be interested to see how I do. We are only upping it by one pill a day so now I will be on 7 total every day (I think that is 3500mg). If was funny to learn something new after almost 3 years on the drug. Hoping my SE stay the same.



  • letranger
    letranger Member Posts: 166
    edited October 2015

    leftfootforward, why did onc take you off of Tykerb? When a patient is taking 2 meds at the same time, how does onc decide which one is not working?

    And a question for anyone out there: I am on my 4th cycle of xeloda ( 2 weeks on. 1 week off). I seemed to have controlled the Cracking of my hands. I'm not sure how, but perhaps the essential oils I have been rubbing on my hands? I also use my son's "mum + bub" found at babies r us or amazon. "Working hands" worked well, but I can't stand the smell.

    But my question is, what causes the darks spots and discoloration? My palm side is black! Why does this happen? I'm wondering if I soaked my hands in lemon juice would it help with the skinlightening??? Is this possible? Or would it aggravate the HFS? I also have dark spots on my inner lips. In addition, my nails are tender.

    My clinical onc says she will be able to reduce my xeloda dosage by 1 pill. Yippee. I could use some relief.

  • gciriani
    gciriani Member Posts: 195
    edited October 2015

    Letranger,

    The discoloration and dark spots may be happening independently with age, but to make sure I would go to a dermatologist who has experience with cancer drugs, because there is a chance this is a further symptom of HFS. I emphasized the words experience with cancer drugs, because I had bad experience with dermatologists who were treating my wife for HFS; they didn't know how capecitabine (Xeloda) interacted with the skin, and prescribed creams with steroids which exacerbated her symptoms.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited October 2015

    Let ranger- You have a good question about how they know which drug isn't working. But here is the simple answer. I only had 1 liver tumor and the rest of my body was NED. Xeloda treats all cancer and the Tykerb is a targeted therapy. My oncologist decided to change the Tykerb back to Herceptin to treat any Her2+ cancer and keep the Xeloda to help keep the rest of the cancer at bay. She admited they couldn't determine if I grew a tumor in my liver because I was off meds for a period of time for my brain surgery or if it would have happend anyway. She also couldn't say if that if I stayed on Tykerb I would not be fine. She just knew there was a change in my status. So she decided to take me of tykerb. There was no right answer as to what to do with the one liver lesion. At first she was going to put me on taxol then herceptin and perjeta. But since they found nothing else she took a more conservative approach and saved the taxol for later. And I am not doing perjeta because it would add to the cardiotoxicity of the herceptin and I had problmes with that last time around. So it was a guessing game and my lastest sscans came back NED so it is working for now.


  • sandilee
    sandilee Member Posts: 436
    edited October 2015

    letranger- When my onc put me on xeloda, he told me that it would darken my skin, especially my hands and feet.Whle it caused reddness and cracking (on the 3000) dose, I didn't experience the darkening of the palms and feet, but instead got little dark spots all over, especially my face. New little freckles. Also freckles on my arms. Apparently your side effect is common, although I experienced it differently. What is your current dose of Xeloda? Maybe a slight reduction would make sense. My onc's NP reduced my dose from 3000 to 2500 (one pill) and it definitely helped with SEs.

  • letranger
    letranger Member Posts: 166
    edited October 2015

    dear all, thank you for your answers!!!!

    I'm on 5 pills (2500), 2 weeks on , 1 week off. Onc is going to dose reduce anyways. I'm also medium- dark skinned so perhaps that is a factor. But I have read on other sites that darkening of the skin is a symptom. But just wondered why. Even my knuckles and finger joints have darkened.

    I'll keep you posted on any other info I get after my onc appmt next week.

    Warm regards

  • letranger
    letranger Member Posts: 166
    edited October 2015

    leftfoot! Inspiring and joyous news that you are NED! May it always be!

  • 3Holly
    3Holly Member Posts: 201
    edited October 2015

    I had a friend suffering breast cancer whose palms of hands and soles of feet turned black (very black and looked really strange), and I'm almost positive she was on Xeloda, but when I asked about this side effect when considering Xeloda, the (highly experienced) nurse practitioner said it is not a side effect of Xeloda, so I am stumped. She says that Xeloda can cause dark spots in areas where there are potentially cancerous sun damage spots - i.e, maybe freckles darken, etc.. However, it does not make sense to me that the palms of hands and soles of feet would turn completely black since they are not areas where skin cancer usually occurs. Seems like there is a lot unknown about this drug, I wonder how long it has been around.

    I have not yet received the pills, not sure if they are coming by mail or what. Very anxious about SE's and just not knowing what will happen. Thank you all for sharing your experience.

  • gciriani
    gciriani Member Posts: 195
    edited October 2015

    3Holly,

    What the nurse is saying does not make sense to me. I've read quite a bit of research literature about HFS: "potentially cancerous sun damage spots" as the locations for darkened area is news to me. The following is the link to the best review of HFS I've found: http://www.appliedcr.org.br/artigoPreloVisualizar.... I recommend everybody to read it, because it is very informative, and gives a few ideas (it also mentions that udderly smooth and bag balm did not yield results).

    There is no mention in this article of dark spots associated with cancerous sun damage locations. Nor there is a mention of it among the 38 side effects listed by the Medscape page on the drug: http://reference.medscape.com/drug/xeloda-capecita...

  • sandilee
    sandilee Member Posts: 436
    edited October 2015

    Thanks for the links, gciriani. Very interesting. My oncologist definitely said my hands and feet could turn dark. I'm surprised they would turn black, though. When I was on my higher dose, the soles of my feet were reddish purple. The dose reduction is the answer.

  • letranger
    letranger Member Posts: 166
    edited October 2015

    I found this article:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2959221/

    "In this case, HFS occurred in the patient after two cycles of capecitabine taken for adenocarcinoma. The pigmentation was not present prior to therapy and no other drugs were taken prior to capecitabine. In addition, the patient also had oral pigmentation. Following completion of treatment, the pigmentation regressed. This confirms that the HFS with oral hyperpigmentation could be attributed to capecitabine."

    The pictures of his hands look like mine, but not as bad.

    Here is a pic of my hand, although I feel like it looks darker in person:

    image

  • Rseman
    Rseman Member Posts: 69
    edited October 2015

    I've been reading the thread and I'm on my second round of X with really not too many SEs. But my markers are still going up but more slowly. Is the absence of SE ever an indication the medication isn't working

  • sandilee
    sandilee Member Posts: 436
    edited October 2015

    Wow. That's dark. But I would bet money on the Xeloda as the cause. Mine kind of looked like that, but redder and only in some places.

    You have had previous chemo, and I'm wondering if that could make your SEs a bit more severe.

    Rseman- I don't think SEs are connected to efficacy in most cases. At least that's what I've heard around these pages for the last several years. Good luck. Sometimes the markers go up before going down. Mine did.

  • 3Holly
    3Holly Member Posts: 201
    edited October 2015

    My friend's hands looked similar - maybe even darker, and she was light skinned, so it looked very strange. It has to be the HFS - she told me her onc told her this discoloration is very rare, but I wonder given that others are experiencing it here.

  • Kessala
    Kessala Member Posts: 91
    edited October 2015

    I can't agree with the nurse who suggested the darkened skin from Xeloda is "potentially cancerous sun damage spots" either. Some of my Xeloda spots have been inside my mouth! Sun damage? I think not.

    I've gotten increased dark skin spots or freckles since starting Xeloda. They're mostly on my face, upper lip, forehead, tip of my nose, inside my mouth in a couple spots (dentist noticed them), and on my palms.

    On another topic, have any of your oncologists had a problem with patients getting a flu shot during the On weeks of taking Xeloda? Curious.

    Kessala

  • sandilee
    sandilee Member Posts: 436
    edited October 2015

    Kessala- I don't know about "on" weeks, but my once gave me a flu shot this week when I saw him. It was the first day of my off week

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited October 2015

    I got the flu shot during my on week.

  • letranger
    letranger Member Posts: 166
    edited October 2015

    I also wanted to mention that my hands smell being on Xeloda. I would describe it as a burnt smell. Can anyone relate? I've used different creams on my hands so it's not that.

    Thanks.

  • 3Holly
    3Holly Member Posts: 201
    edited October 2015

    Letranger, sorry you are having these unpleasant side effects - maybe they could reduce the meds or switch to a new med till the SE's go away?

    Kessala, I agree the explanation that Xeloda is targeting sun damage makes no sense to me since there would be no sun damage in the mouth, and highly unlikely on palms of hands and soles of feet. Strange how little they know about his drug, or even the optimal dosage.

    Finally picked up the Xeloda today. My onc is still recommending I start with 3500 mg, but he's ok with the 7/7 schedule instead of 14/7. He did say it is common for them to have to make adjustments for those on the 14/7 schedule of 3500 mg, so I hope to get the dose right given that HFS is irreversible without stopping the med.

    My other onc - who is also excellent - at a different hospital - said she recommends 3000 mg on the 7/7 schedule. So I am starting the Xeloda tomorrow and am still on the fence on whether to go with 3000 or 3500 (I have at least decided on the 7/7 schedule, but I wonder if the dosage matters, and whether the 3500 would mean more SE's - even if on a 7/7 schedule - or not). As Steph says, "Eenie Meenie Minie Mo" - these decisions are exhausting and stressful!

  • gciriani
    gciriani Member Posts: 195
    edited October 2015

    3Holly,

    According to some study, HFS can be brought down a notch or two (i.e. to a manageable level) using Uridine cream or Uridine-Thymidine cream. That's what I've preparing for my wife for the last 15 months.

    Irena Netikova, Agnes Petska, Juergen Barth. Recent clinical studies with uridine cream. EJOP. 2009;3(2):22-23.

  • 3Holly
    3Holly Member Posts: 201
    edited October 2015

    gciriani,

    Thank you for that useful info on uridine cream, that is good information. It's so great to hear that you prepare these remedies for your wife - I'm sure that it makes a huge difference for her to have so much love and support! I am similarly blessed with a wonderful husband and family and friends - I count my blessings every day, they make this journey far more tolerable.

  • 3Holly
    3Holly Member Posts: 201
    edited October 2015

    Hi everyone,

    Wondered if anyone has advice on when and what to eat before taking the pills. I am a wimp, but I needed an extra day to prepare before starting Xeloda, so I'm starting tomorrow. Don't like to eat in the morning, but the onc said to eat within 30 min of the meds - does that mean 30 min BEFORE the meds? Also said to take the meds with water. Can anyone tell me if it can just be a slice of toast or fruit or anything, or do I need to eat a meal even though I'm not hungry in the morning?

    My onc prescribed Compazine (I think that was the name, haven't opened it yet) as needed for nausea - I wonder why not Zofran - is this what most people get? It says to take every 8 hours as needed. Hope it works and doesn't knock me out.

    One good thing, I seem to be losing weight - maybe it's because I always get so stressed going to a new med. Still just trying to get used to the blood thinner needles I now take twice daily - I guess I will try to combine both unpleasant tasks - needles and pills - and take them at the same times. Picked up some "Udderly Smooth extra care cream - unscented, with urea". Hope it helps.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited October 2015

    I am contemplating a xeloda holiday. I have been in it for almost 3 years without a break. I am stable with NED in my latest scans. I kind of feel like I am playing with fire if I take a break but the fatigue is getting to me. I am on Zherceptin and would continue that.


    Anyone else taken s break?

  • Kessala
    Kessala Member Posts: 91
    edited October 2015

    3Holly,

    I've been taking Xeloda for over two years. I take my Xeloda right after eating. You can also take it during a meal if that helps you remember to take it. The idea is to have food in your stomach before swallowing the medication.

    Sometimes I eat as little as a slice of toast or a couple cookies (I'm not much of a breakfast eater either) before taking Xeloda.

    Oncologist prescribed generic Zofran for me "just in case" when I first started Xeloda. I never took any Zofran, never developed any nausea with Xeloda. The Zofran sits in my dresser drawer untouched.

    I have had great results with Xeloda. It eliminated my liver mets. I hope you have the same good luck with it!

    Kessala


  • 3Holly
    3Holly Member Posts: 201
    edited October 2015

    Kessala,

    Thanks so much for that advice on the food - good to know I don't need a full meal. Great to hear of your success with Xeloda, and that you've been able to tolerate it for so long. Hope you have continued success!

    Just took my first 4 pills, it's a relief to have it done. I will be on the 3500 mg (7 pills) - 7 day on, 7 day off cycle to start.


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