All about Xeloda

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  • NicciJ
    NicciJ Member Posts: 73
    edited April 2016

    OMG! Yes! Yes! So sorry! 4000 mg total for the day! I think I am losing my mind. You were right to notice, Roses.

    Goldie!! What horrible SE's! Did those start immediately or over time? Wow, I can't believe the rash and all that horrible stuff. I just took my 4th dose and so far I just haven't felt very well and not much of an appetite.

  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    Sandilee, I think in your case you have to enter 65 inches, 120 lbs, and 1250 mg, which when you click "Calculate Value" gives 1975 mg twice a day (I picked the third value which comes from the most recent study, but they are all pretty close to each other anyway).

    As a side note, I used to think that it was not that important to strictly follow prescribed doses, under the assumption that the studies only provided average guidelines, and that there is much variation among clinical responses. However, I recently read a book (The death of cancer), by a former director of the National Cancer Institute, which makes a very important point. According to the author many oncologists do not follow prescribed doses, because they care and think they want to be more gentle to their patients. Unfortunately the consequences are disastrous for the patient, because the doses have been calibrated to obtain a certain concentration in the patient that will kill cancer cells; smaller concentrations will only slow down the cancer cells but not kill them.

    It was sobering: do question your oncologist, and get answers on what their assumptions are and what recommendations they are following. If it's too much for you, have a health advocate discuss it with your oncologist, and don't be shy to have second opinions.

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

    Nicci, the worst reaction was my first cycle, starting on 4/3 pills a day for 2 weeks. After that I was moved to 4 pills a day 2/2, then to 5 pills, then to 6 and just this cycle back on the 7. I do 3 in the am and 4 at night. My hands have gotten worse, but I don't have the rash, don't have the explosive watery D, no blisters on my lips. So I think my body couldn't take it in such a large dose in the beginning, but over the year I have been on, I guess it's just gotten used to it. I may take like an 8-10 day break when I finish this cycle, to have a little extra healing time.

    So glad to hear it was a mistake on your dosage!

  • sandilee
    sandilee Member Posts: 436
    edited April 2016

    Thanks, gciriani. According to that calculation, I'm low. Kind of scary, actually, because I don't think I can handle any more. My feet str blistered and my big toes were becoming infected. And my hands were also pretty bad, but more pain and fewer actual blisters. I may want to move on to something else. I have an 88 year old mom I'm trying to care for as she has the beginning of Alzheimers, and I need to go down to her house fairly often. If I can't walk it's just not going to work.

    I think my doc is of the "stable is good" philosophy, as he doesn't believe that the cancer can really be completely killed off with chemo, anyway, once you have as much cancer as I do. Keeping it tapped down for a long time is the goal. Chemo will kill some cells, but it will become resistant eventually and the stem cells will grow again. I've been on this for eight months, and my body still isn't "used to it." He wants me to try another hormonal, as he feels that they usually give the longest stability, if they work.

    Fortunately, I can talk to my onc about anything and I would get another opinion if I ever doubt his judgement.

    The insert for Xeloda from Genotech gives 2500 daily as the standard dose, which is what I am on. Maybe this has changed??

    Your post made me curious about the thinking behind dosage reductions, and apparently there are studies that more than suggest that small reductions don't reduce efficacy and in some cases allow patients to stay on the drug for longer periods than they could otherwise. I also think different people have different tolerances based on how well the drug leaves your system. I'm thinking my body may have a hard time clearing it out- maybe because of liver or kidney issues? In any case, so far my dose has reduced my liver tumors, but I don't know if I can keep it up at this level. We'll see.

    http://annonc.oxfordjournals.org/content/early/201...



    1. --------------------- DOSAGE AND ADMINISTRATION ----------------------
      • Take XELODA with water within 30 min after a meal (2)
      • Monotherapy: 1250 mg/m2 twice daily orally for 2 weeks followed by a one week rest period in 3-week cycles (2.1)
      • Adjuvant treatment is recommended for a total of 6 months (8 cycles) (2.1)
      • In combination with docetaxel, the recommended dose of XELODA is 1250 mg/m2 twice daily for 2 weeks followed by a 7-day rest period, combined with docetaxel at 75 mg/m2 as a 1-hour IV infusion every 3 weeks (2.1)
      • XELODA dosage may need to be individualized to optimize patient management (2.2)
      • Reduce the dose of XELODA by 25% in patients with moderate renal impairment (2.3)
  • susan_02143
    susan_02143 Member Posts: 2,394
    edited April 2016

    My oncologist thinks one of the great pros of Xeloda is how many different dosing protocols have been studied in great depth. Her research indicates that after 6 months (8 cycles) of full doses, reductions can be made with great results. The current research also indicates that one can change the number of days on/off while keeping the dosage higher, also successfully.

    *susan*

  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    Sandilee,

    The dosage you quoted from the drug insert is 1250 mg/m2, which means 1250 per square meter. Your body surface is about 1.58 square meter (using 5'5" and 120 lbs), thus multiplying by 1250 your dose is 1975 twice a day. That is is approximately 4000 a day, however, you said you are taking 2500 a day. The reduction recommended by Genentech is 25%, which starting from 4000 would mean going down to 3000, and that is for patients with kidney impairment. So your reduction would seem to be from 4000 to 2500 which is about 37%.

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

    I have a question for those of you who swear by Vick's Vaporub. It has a petroleum base, which is an emollient. What else in it do you believe is helping your HFS? My hands and feet and becoming sensitive. I am open to trying Vick's but can't stand the smell! If plain Vaseline would work just as well, I would prefer that. It is funny, my DH loves Vick's and uses it for everything. Any thoughts on what makes Vick's work would be helpful.


  • Rseman
    Rseman Member Posts: 69
    edited April 2016

    JFL I use Vaseline. I think it helps a tremendous amount. However I don't have a big problem with my hands and feet yet other than dryness. I am very diligent about putting Vaseline on. About three times a day

  • sandilee
    sandilee Member Posts: 436
    edited April 2016

    So Genetech's recommended standard daily total is not their real daily total? Strange that they would omit the calculation info in their dosage insert, but I guess the insert is not intended for the uninformed. The trials that were done on reduced dosages also talked about how many mgs they gave their patients, in actual msg and pill numbers, not calculated by square meter, so I'm confused. But then, what's new? :-)Loopy And why do drug companies make it so hard to figure out what you're supposed to do? My onc started me on 3000, but that was really hard on my feet. I mean, I have to be able to walk. Maybe I'd be better off taking it in the IV form. It just really wants to hang around in my body too long. I wonder if my being older makes a difference.

    Edit: I get it now. The little m2 is the key. Thanks, gciriani. Love learning new stuff from you all.

  • sandilee
    sandilee Member Posts: 436
    edited April 2016

    JFL- My onc's NP recommended O'Keef''s Foot cream. It contains urea, and I've found it the best of what I've tried so far, and I've tried a lot. Vasoline (which is good for before bed), Udder Cream with urea, Vaseline Intensive Care, (which is surprisingly soothing and I found useful when I needed something that works "in public" without being to greasy.) In the end, though, whatever you put on it only helps heal what has already happened and really doesn't prevent more damage coming from the inside. Creams won't prevent blisters or swelling, but they can give temporary relief from dryness and cracking.

  • sandilee
    sandilee Member Posts: 436
    edited April 2016

    Well, yeah. I guess my age is relevant to why I'm having a hard time. I found this on a European medical site:

    "Elderly

    During capecitabine monotherapy, no adjustment of the starting dose is needed. However, grade 3 or 4 treatment-related adverse reactions were more frequent in patients ≥60 years of age compared to younger patients.
    When capecitabine was used in combination with other medicinal products, elderly patients (≥65 years) experienced more grade 3 and grade 4 adverse drug reactions, including those leading to discontinuation, compared to younger patients. Careful monitoring of patients ≥60 years of age is advisable.

    - In combination with docetaxel: an increased incidence of grade 3 or 4 treatment-related adverse reactions and treatment-related serious adverse reactions were observed in patients 60 years of age or more (see section 5.1). For patients 60 years of age or more, a starting dose reduction of capecitabine to 75% (950 mg/m2 twice daily) is recommended. If no toxicity is observed in patients ≥60 years of age treated with a reduced capecitabine starting dose in combination with docetaxel, the dose of capecitabine may be cautiously escalated to 1250 mg/m2 twice daily."

    It's all very interesting, even if painful. ;/


  • NicciJ
    NicciJ Member Posts: 73
    edited April 2016

    Medicating......my onc has me 7 days on, 7 off. I noticed that mentioned 2 weeks, then off 1. He told me there were a couple ways you could do it, but that this was the way he preferred. Anybody else do it like me?

  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    I skimped on breakfast this morning, trying to get out the door for church. BIG mistake. Spent half the service in the women's room throwing up, and then had to drive myself home. Verrrrry slowly. On back streets.

    This has never happened before. In 2.5 years, I really have not had much tummy distress from Xeloda. I have Zofran but rarely take more than one per cycle. But I felt wobbly and woozy all afternoon, and I wonder if some of that is because I was exposed to dissolved Xeloda. Anybody had that happen?

    At any rate, I was not able to eat today after all of that, so I decided I had better skip tonight's dose and start again tomorrow morning.

    Moral to the story: Don't send a banana to do an omelette's job.

  • NicciJ
    NicciJ Member Posts: 73
    edited April 2016

    Wow! 2.5 yrs is amazing in itself! So sorry your service was ruined. Thanks for mentioning, though. That totally sounds like me about the breakfast. I haven't done it yet since only on the 3rd day, but already have been tempted to. Guess I better not! Ugh, really sorry lulubee!

  • RosesToeses
    RosesToeses Member Posts: 244
    edited April 2016

    Lulubee, that really stinks, I'm sorry it happened to you.  Thanks for the warning!  Hope you're feeling better now and it wasn't too long lasting.

    As for dose, I think the 1250 mg/m^2 is helpful to determine an upper limit and get some perspective, but I've also read some different things about lower doses still working.  This study in 2011 suggests 1000 mg/m^2 as an equally effective starting dose (which is good, because that's what I'm on!).  I know it's not a great idea to grab random studies on the internet, but I do trust my onc and the link is on the Metastatic Breast Cancer Network website which I consider pretty legit.

    Nicci, many of us are on the 7/7 schedule, myself included.  Xeloda's been on the market a long time (15 years or so, I think), so there have been a lot of different studies and recommendations since the initial 1250 mg/m^2 14/7 schedule that the drug was approved under and there seem to be several different approaches being used currently.  I'm glad I'm not the one having to sort it all out.

    I can say, in the last 4 months since I started Xeloda, my tumor markers have dropped dramatically and my scans show a good response, so that's good.  But there's so much variation in all this mbc stuff, it feels a little crazy sometimes.


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

    Sandi, I take extra days off when I feel I need it and my onc is ok with that. The upped dosage is really messing my hands up. I'll be done on Friday and plan to take about a week and half off to give them time to heal some.

    JFL, not sure what in Vicks that helps. I have use the Vaseline, but not with gloves. I say give it a try.

    Nicci, I did the 7/7 and my TM's went up, so I stopped. It was nice though!

    Lulu, sorry about your missed breakfast incident. I haven't had much tummy trouble, other than gas and maybe some mild upset. I have often had just a banana or a thing of yogurt for my morning meal without any reaction.

    Roses, I wish just for once I could show stable or NED. Just hasn't happened for me. Happy for you though.

    …Looking forward to Friday!

  • gciriani
    gciriani Member Posts: 195
    edited April 2016

    Roses the review study is very legit, and very interesting because it compares all previous dosage and outcomes. Thanks.

    The bottom line is in the sentence preceding the conclusion section: "although it appears safe and effective to lower the capecitabine dose* ... it is important to maintain as high a dose as possible, without compromising safety, on the standard intermittent schedule".

    Note*: from 1250 mg/m2 b.i.d. to 1000 mg/m2 b.i.d., in which b.i.d. means twice a day. So at 1000 mg/m2 times two times a day for Sandilee with 1.58 m2, would still be more than 3000 mg a day, or more than 6 pills of 500 mg.

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

    Rsman, Goldie and Sandilee, thanks for the feedback on Vicks and other HFS creams. Sandilee, I bought some O'Keefe's foot cream today after reading your post. Once my Excipial hand lotions are used up, I will try the hand cream. I checked the O'Keefe's labels today and O'Keefe's is the first cream with urea I have found that does not contain parabens. The Excipial has been helping me. However, I am not using their strongest product because the stronger versions (with urea) contain parabens. I am a runner and determined to keep the HFS under control so that I can continue running. It would devastate me to have to put the running on hold. My feet do hurt in general although they feel okay while I run. I have found it helps to be very careful with them - I wear "fluffy" socks or my thick, pillowy, fluffy "yoga toes" slippers at home, put lotion on my feet before I go to bed, rotate which shoes I wear to work, wear nylon stockings most days to protect against friction at work and discretely take my shoes off under my desk when I am alone in my office.

    Has anyone tried benadryl cream for HFS? I recall my prior onc had me use that when I had extreme HFS on my hands from Taxotere 9 years ago for early stage BC. I never knew if it helped because my HFS was so bad. It might have been worse without it, I am not sure.

    On the whole dosage issue for Xeloda v. side effects, some of this is art and not 100% science. If a dosage protocol is too toxic to remain on it or too toxic to have a reasonable quality of life, what is the point? My onc seems to favor a lower dose where a patient can remain on the protocol without breaks in treatment, rather than forcing a higher dose. He has found that in his experience with patients, he hasn't seen a difference in outcomes with lower doses on Xeloda.

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

    Lulubee, your nausea doesn't sound like fun! Definitely an omelette lesson! My first cycle of Xeloda, I did have a wave of nausea/faintness triggered by smell. I passed by the back of a hotel near my house that smells like rancid/moldy laundry detergent/washing machine. I have smelled this many times behind this hotel (which is located along a walking path) but it never bothered me. This day, there was also the strong smell of hot dogs in combo with the rancid laundry smells. I became faint, nauseous and queazy although I was able to avoid vomiting. Usually, I have a stomach of steel and nothing bothers me. Also, I eat a good, hearty meal with my Xeloda doses because I was told Xeloda needs food to metabolize properly.

  • RosesToeses
    RosesToeses Member Posts: 244
    edited April 2016

    JFL great part about art not science, I totally agree with you.  Actually, with stage iv, I think that applies to so many areas--treatment choices, modifications, dealing with side effects, even how the progress is monitored and determining what results are really saying (needs more time?  healing bones or sclerotic mets?  a bad sign but needs more tests to be sure?).

    I got more good news last night.  My 1000 mg/m^2 7/7 dose has brought my ca27.29 tumor markers down to 47.5, actually within shooting distance of a nice normal 40!  I'm so pleased!  In 2015, it was failure after failure, but in the 4 months I've been on Xeloda my markers have dropped 70%.  I can hardly believe something's actually working.  Wishing everyone similarly good results! 

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

    JFL, I hope you can continue to run, but I would say to be prepared if you can't. I guess it just depends how bad the HFS gets. Mine gets worse as I increase my dosage, now 7 pills.

    I'm on day 12, and the red itchy rash I got in the beginning (a year ago) has returned. I have it on my chest, top of thighs, and my arms. I take a Benadryl every night, as that has helped keep it at bay. But not now. I even took 2 last night.

    Roses, a 70% drop, that is awesome. Congratulations!

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

    due to heart issues I have been taken off my targeted therapy of Herceptin. I am now only going to be on Xeloda by itself. I've never only been in Xeloda. Hoping it continues to do the job enemy without helpers. It's been over 3.5 years of combo therapy. Now I'll find out how well it works on its own.

  • sandilee
    sandilee Member Posts: 436
    edited April 2016

    Roses! That's an amazing result! Great news, for sure.

    JFL, another good thing about the O'Keefe's is that it doesn't contain alcohol. So many of the hand and foot creams do. I don't really know why, but my NP says it is drying, and to try to use those without that.

    leftfoot- I imagine you will feel a little anxiety going without Herceptin. Good luck to you!

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

    Roses- great result. Happy Dance!!!!!

    I took new liver enzyme tests today and they returned to my norm-so I get to stay on X. So happy, but really having hand & foot issues!!!!

    Babs

  • RosesToeses
    RosesToeses Member Posts: 244
    edited April 2016

    Thanks, everyone! 

    Goldie, sorry about the rash, sounds uncomfortable.  Have you tried the Benadryl cream?  I'd never heard of it before one of my chemo nurses recommended it for a rash I had during chemo and it worked like a charm.  If the pills usually help you, putting the cream right on it might give you an edge against it?  It's funny you mentioned it because I've been getting some not too bad red patches on and off on my neck and upper chest, I didn't blame the Xeloda because I hadn't heard of rashes being a side effect, but now I'm wondering.

    LFF, wishing you the best with Xeloda by itself. I don't know that much about HER+ disease, but I do know stopping drugs and facing the unknown is hard, hope it all goes great for you!

    Babs, congrats on the better liver numbers!  Hope the hands and feet get better soon.  How long are you from your next off week?


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

    Roses, I do blame X for the rash. Never had it until I started X. Maybe they don't know about all of the SE's???

    LFF, sorry you have to quit Herceptin due to your heart. May Madame X be the only help you need! Good luck.

  • sandilee
    sandilee Member Posts: 436
    edited April 2016

    I'm pretty sure that Xeloda can cause a rash in some people. The back of my hands get rash spots , but that is so minor compared to the cracking, peeling and blisters of my fingers and toes that I hardly notice.

    I was in the Onc's office a few months ago and sat next to a woman who had rashes all over her arms, and other places as well. She said it was the Xeloda, but she didn't want to stop because it was working. It really looked uncomfortable, but she said it didn't itch- just looks bad. The doc hadn't seen her yet and she was afraid he'd take her off. Maybe he just prescribed Bendryl, :) I know it helped me when I had rashes due to Faslodex on my backside.

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

    Thanks Sandi, I take Benadryl every night. Usually just 1, but last two nights I've taken 2. I'll get me some of the cream and try that. I would post a picture, but I am a freckled person, and the pics just don't really show it well! My arms don't itch much but my back, legs and chest do. To the point of where it sometimes bleeds, especially my chest.

    Ahhhhh Madame X, thank you so much!!!

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

    I too have gotten rashes from Xeloda. Happy to say I haven't had one for a bit. Benadryl and local Benadryl cream did the trick for me.

    yay Babs!


  • lulubee
    lulubee Member Posts: 903
    edited April 2016

    My facial skin is sensitive and reactive in any event, so I guess it's no surprise that I've had some problems there since I've been on Xeloda. Little red specks with a tiny white spot in the middle-- but not like acne. I sometimes get several at a time, and then I'll have none for a while. I've had some flaky, peely spots on my face also. Those take forever to heal and drive me a little crazy. I have one on the side of my nose right now that's been there for three months, flaking and peeling over and over. Very pretty. HA!

    I'm an ace with concealer nowadays.