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All about Xeloda

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  • carpe_diem
    carpe_diem Member Posts: 599
    edited February 2016

    I've been taking Xeloda since last April and it's done a number on the cancer - liver tumors smaller, skull met disappeared, lung and shoulder blade stable. It has also done a number on my hands and feet. HFS showed up within days of starting, along with mouth sores and toe nails falling off. I started at 2000 mg morning and evening, 14/7 and reduced gradually to 1000 mg twice a day, 7/7 without totally getting rid of foot problems. My last tumor markers were slightly up, though still in normal range, and I'm back on 1500 mg twice a day 7/7 without much change in my feet, but my onc had a surprising suggestion, assuming my next scan is still stable. She asked me to think about getting a port and switching to 5-FU, given intravenously for 46 hours (you wear a fanny pack), in the hopes that I'd get the benefit of Xeloda's final active product and possibly avoid the HFS. From what I can find, 60% of people on Xeloda develop HFS compared to about 6% on 5-FU,

    Has anyone heard of trying this, or had previous experience with 5-FU? How were side effects?

  • gciriani
    gciriani Member Posts: 195
    edited February 2016

    Carpe Diem,

    My wife was not offered that, but your statistics seem correct, and it would make sense. Oncologists seem to overlook HFS, since the side effect superficially doesn't fall in their province. But it should fall in their province, because HFS is the single side effect that is most adversarial to a treatment that for several is very effective. It is also worrisome that some oncologists concentrate on decreasing the dose, instead of being more proactive in helping decrease HFS. I just finished reading a book* written by a former director of the National Cancer Institute, and he is very accusatory against colleagues who decreased effective doses, and blunted effective weapons against cancer.

    Note*:

    Vincent DeVita. The Death of Cancer: After Fifty Years on the Front Lines of Medicine, a Pioneering Oncologist Reveals Why the War on Cancer Is Winnable--and How We Can Get There. New York: Sarah Crichton Books; 2015.

  • carpe_diem
    carpe_diem Member Posts: 599
    edited February 2016

    Thanks, gc, I'll look for the book. I hate to give up on a treatment just because my feet hurt, but I need more research on the alternatives before getting a port and dealing with extended infusions. And then, maybe Xeloda has stopped working and I'll need something completely different. Scans are March 7.


  • lulubee
    lulubee Member Posts: 903
    edited February 2016

    Susan, the GI stuff usually hits me on the 7th day as well. Since I am usually achy by then anyway, I sometimes take a small dose of vicoprofen on days 6 and 7, in the evenings. It's really constipating, so I figure it's hitting two birds with one stone, so to speak. LOL. I didn't take any this last cycle, and the big D hit right on schedule.

    But I also figure the diarrhea is helping me move past peak toxicity faster, so I try not to fret about it and plan to stay home that day.

  • lulubee
    lulubee Member Posts: 903
    edited February 2016

    Something that helps me that you all might try... Lemon Ginger Tea with Probiotics by Bigelow. I sip it during my 7-on weeks. The lemon is cleansing to the liver, which is working overtime to process the meds. The ginger helps keep the wonky stomach quieter. Probiotics are always a good idea, especially when you're freaking out your gut with chemo drugs every few days. No caffeine.

    Tasty, too. I get it at Target, but I've seen it at regular grocery stores, too. It costs more than twice as much on Amazon.

    Comes in a yellow box, easy to spot.

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

    Just finished my 4th round on Xeloda and my feet are a mess-especially my right heel. I am using 40% Urea or Udderly Smooth. Do you have any other suggestions? This really hurts!

    I'm having my scans on Monday and I'll know if the Xeloda is working at that time. I hope so-this HFS is no joke.

    Babs

  • carpe_diem
    carpe_diem Member Posts: 599
    edited February 2016

    Babs,

    After 10 months on Xeloda with frequent dose reductions starting with 4000mg 14/7 down to 2000 mg 7/7 and now back up to 3000 mg 7/7, I still have the same problem with my heels. The urea cream is supposed to help, and it has certainly gotten rid of every other callus on my feet, but the area an inch or so above both heels is sore and flaking, and it's uncomfortable to walk barefoot or in socks. What has helped me is OOFOS slides, which have no edge around the back of the heel (unlike my Birkenstocks), and are advertised as "The Most Comfortable Recovery Sandals on the Market. Great for everyday wear, Standing, and Athletic and Medical Recovery. "

    I wear them with thick socks, either Dr. Scholl's diabetic or cozy alpaca, and I've only had a few days even in upstate New York that I needed to resort to boots. Every doctor or specialty pharmacist I've talked to says that the only thing that fixes it is dose reduction or stopping completely. I went back up a bit on the dosage when my tumor markers went up slightly and so far my feet are no worse. If my scans are still stable next month, my onc is asking me to consider 5-FU, which is the final product of Xeloda, since it is less likely to cause HFS. I'll let you know how that works out.

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

    Unfortunately, there really isn't anything that helps. Other than like Carpe said. Quitting and maybe dose reduction. I did do 7/7 for 3 cycles and it was a little better, but my tumor markers went up, so I went back on 14/7, 3000 mg a day. The outside edge of my heels hurt and are split. I don't really have a problem with my palms or the bottoms of my feet. My hands are the worst, and my nails are now lifting, attached only by about a 1/4 of the nail bed. Edges of my hands and fingers are bad and hurt. Also cracked. I have an array of lotions. For me, the bag balm and Vaseline work the longest to keep them somewhat moisturized.

    SUCKS!

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited February 2016
    Guess I shouldn't be gardening, cooking or doing dishes!! I don't run, so that doesn't apply to me.From Chemocare.com
    Care During Chemotherapy and Beyond

    Hand-Foot Syndrome

    image

    Other terms: Palmar-Plantar Erythrodysesthesia; PPE

    What is hand-foot syndrome?

    Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.

    Things you can do if you suspect hand-foot syndrome (Palmar-Plantar Erythrodysesthesia):

    Prevention: Prevention is very important in trying to reduce the development of hand-foot syndrome. Actions taken to prevent hand-foot syndrome will help reduce the severity of symptoms should they develop.

    • This involves modifying some of your normal daily activities to reduce friction and heat exposure to your hands and feet for a period of time following treatment (approximately one week after IV medication, much as possible during the time you are taking oral (by mouth) medication such as capcitabine).
      • Avoid long exposure of hands and feet to hot water such as washing dishes, long showers, or tub baths.
      • Short showers in tepid water will reduce exposure of the soles of your feet to the drug.
      • Dishwashing gloves should not be worn, as the rubber will hold heat against your palms. (I do wear gloves)
      • Avoid increased pressure on the soles of the feet or palms of hands.
      • No jogging, aerobics, power walking, jumping - avoid long days of walking.
      • You should also avoid using garden tools, household tools such as screwdrivers, and other tasks where you are squeezing your hand on a hard surface. (I garden and I can, so this is not an option for me)
      • Using knives to chop food may also cause excessive pressure and friction on your palms. (I also love to cook)


    Cooling procedures:

    • Cold may provide temporary relief for pain and tenderness caused by hand-foot syndrome.
    • Placing the palms or bottoms of your feet on an ice pack or a bag of frozen peas may be very comforting. Alternate on and off for 15-20 minutes at a time.

    Lotions:

    • Rubbing lotion on your palms and soles should be avoided during the same period, although keeping these areas moist is very important between treatments.
    • Emollients such as Aveeno®, Lubriderm®, Udder Cream®, and Bag Balm® provide excellent moisturizing to your hands and feet.

    Pain relief:

    • Over the counter pain relievers such as acetaminophen (Tylenol®) may be helpful to relieve discomfort associated with hand-foot syndrome. Check with your doctor.

    Vitamins:

    • Taking Vitamin B6 (pyridoxine) may be beneficial to preventing and treating Plantar-Palmar Erythrodysesthesia, and should be discussed with your doctor.

    Drugs/treatment changes that may be prescribed by your doctor:

    • Chemotherapy treatments may need to be interrupted or the dose adjusted to prevent worsening of hand-foot syndrome.

    When to call your doctor or health care professional:

    • If you notice that your palms or soles become red or tender. This most often occurs before any peeling, and recommendations for relief of discomfort can be given. If you are on chemotherapy pills, you may be asked to hold treatment, or need your dose adjusted to prevent worsening of symptoms.

    Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

  • gciriani
    gciriani Member Posts: 195
    edited February 2016

    Goldie, I think the article you posted has incorrect information. For instance, randomized studies have shown that vitamin B6 is ineffective. My information comes from this article http://www.appliedcr.org.br/artigoPreloVisualizar.asp?cf=120 and from e-mail exchanges I've had with clinical researcher who have been successfully using uridine-based cream in Europe.

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

    Thank you all for the info on HFS I'm on 4000 mgs 7/7 schedule. This is my week off so I know it will be getting better. I can deal as long as my scans tomorrow are good-a bit nervous about them!

    Babs

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

    Gio, I guess we can't trust everything we read on the internet. I was in disagreement with some of it as well. Especially using lotion. I HAVE to use something! How is your wife doing? I see she is doing AC+T again. Is it the same as in the beginning or lighter dosing.

    Babs, of course you are nervous about scans, aren't we all. I get the same way during labs. My labs last time were ready for me to see, but I was gone and I was on my week off. So I waited a week before I even looked. Good luck, let us know. Praying Madame X is working for you. Been working for me for a year now.

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

    Babs, thinking of you as you head towards scan time. Not much more I can say. This HFS is getting worse here too. Not sure what the answer is, but perhaps Dr. Christina will have some thoughts. [That is optimistic. I don't think that there is a thing she can suggest that will actually work.]

    Today was not a good Xeloda day. I went to IKEA with my daughter and son-in-law to buy a crib for the almost-baby. [happy happy] The carts ripped up my hands, and my feet are really painful. But the worst was the two bouts of running across the store to find the bathroom, and then a third one at the house we are renovating where they had taken out the toilet. Needless to say, we did not complete the task of trying paint colors, but instead got home as quickly as possible. And yet, I still feel bloated. Three more doses before I get my off week. Can't come soon enough.

    *susan*

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

    Susan, sounds like the SE are hitting you quickly. Mine weren't too bad in the beginning, but now they are. And you are so right about the week off not getting here soon enough. Maybe skip your last day of pills? I have done that. I have also skipped my first morning dose on my next cycle. I don't start feeling better until about midway into my week off and then the first part of my week on. So short lived! Will this be your first grand baby? When is he/she due?

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

    Goldie,

    I am going to be as compliant as possible, at least until I have my first set of scans. I don't want to be in the position of thinking "it isn't working, but maybe it is because I changed the protocol!" This is my first grand. Gender is unknown, and won't be known until it is welcomed into the world. I have no doubt that this baby was planned due to my illness. She really should have waited a couple of years until she had her doctorate in hand and a first job in her field underway. Cancer is a family disease, isn't it? We are expecting the P'nut's arrival around May 8th.

    *susan*

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

    Susan, when do you get scans? Do you get labs too? I get labs every 6 weeks. Scans are not frequent. Once or twice a year.

    Well a baby in the family is something to be really excited about.

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

    I get blood work done every three weeks including markers. I believe I will get scans [depending on my most recent tumor markers] in a month or two. My scans used to be yearly when I was NED on Faslodex, but are more frequent now that I have "active" disease.

    And a baby is very exciting. First I have to get through being the project manager for the condo we bought so the baby has a place to live! My life is a bit full right now. In a good way. I don't have time for these pesky side effects. :-)

    *susan*

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

    Busy is good, SE's NOT! Glad you can stay busy. My onc wanted be to do labs every 3 weeks. I refused and said I would do them every 6 weeks. I'm not living my life 3 weeks at a time. Besides, how much change can there be in 3 weeks. But that's just me. I dread when I get changed over to Ibrance and Femara when X quits working. Labs every week!

    Baby is going to be living with you?

  • Groovywilma
    Groovywilma Member Posts: 47
    edited February 2016

    To peel? Or not to peel? After a rough 3rd cycle (feet hurt on days 12, 13, and 14 and then the hands were very tender and painful in the cracks of my fingers at the start of the off week! Ouch!) my doctor gave me an extra 7 day break and said we will try the 7/7/7/7 schedule on the same dosage (instead of the 14/7 schedule). I'm looking forward to giving that a try. This extra week off has been great! But the peeling skin: I get very tempted to peel it further when I see it, but not sure if I should? Is peeling good or bad? I feel like I have a thin layer of leathery skin and the slightest friction (opening my medication bottles!) causes my skin to peel. I keep my hands and feet slathered in Bag Balm and covered up when I can. What do you say? Peel? Or leave it alone? Thanks for the feedback!

  • Kessala
    Kessala Member Posts: 91
    edited February 2016

    Groovy, I am also taking Xeloda and dealing with Hand/Foot Syndrome. Regarding the peeling skin, I would clip it off with a nail clipper before I would dare to peel it.

    I've done both and the clipping is a much better option. While peeling the dangling skin seems very satisfying as you're doing it, you'll suffer for it the next day. The areas you peeled will be painful.

    Three months ago I went from a 14/7 Xeloda schedule down to a 7/7 schedule. My Hand/Foot is still bad but definitely not as bad as when I was on 14/7. I'm disappointed the HFS hasn't eased up much more than it has, considering the 7/7 schedule reduces the overall dosage of Xeloda.

    As bad as the HFS is by the end of my On week I can't imagine how I ever managed to stay on Xeloda for two weeks in a row! I used to really suffer on the 14/7 schedule. I was unable to close my hands, unable to write with a pen, unable to zip my jeans, unable to walk normally without limping on painful feet. When I told Oncologist he told me to take a ONE MONTH break from Xeloda and then go on a 7/7 schedule from now on. I was too frightened to be off Xeloda for a month so I simply moved from the 14/7 to the 7/7 regime without taking a vacation from Xeloda.

    I complain but I am also getting good results against the cancer with Xeloda. Xeloda is my first experience with chemotherapy. I am not sure if I will move onto I.V. chemo once no other treatment works...

    Kessala

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

    Goldie-I get TM and blood once a month and usually scans every 3 mos unless there is something suspect. This time my CA 15-3 went down but my CEA went up so my scans were moved up one month.

    Susan-so happy that you're becoming a grandma-there is nothing sweeter than a grandchild! I'm glad your life is full. It helps us live a little more "normal" life and to not think about BC as much. I try to keep myself busy as much as possible.

    Right now I'm waiting VERY anxiously for the scan results. It seems our lives are always involved with waiting-

    Babs

  • gciriani
    gciriani Member Posts: 195
    edited February 2016

    Goldie, thanks for asking. The AC+T is low dosage. Today she had a follow up MRI, 2 months after whole brain radiation, and it looks good.

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

    Cycle 3 is done. My hands and feet are a mess, but I did it! Had a cocktail tonight to celebrate. Three more days of feeling like crap, and then my body can start to rebuild. Done. Done. Done.

    *susan*

  • sandilee
    sandilee Member Posts: 436
    edited February 2016

    susan- So sorry you're suffering so much. Has your doc looked at your hands and feet? I was on 3000 when mine looked at my feet and hobbling around and lowered the dose to 2500. It has helped. I still have some pain and cracking, but it's better. I understand your wanting to try the whole dose before your scan just to make sure you're not sabotaging yourself. I hope after a great scan, your doc will consider a slightly lower dose.

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

    Babs, my CEA went up a tad on my last labs. My onc said he not that concerned, as the CEA isn't that reliable on breast cancer. He said he just throws it in there…lol. Just passing on what my onc said and hopefully to give you a little relief.

    Gio, that is good news. I pray she continues to do well. Is it a weekly infusion? And is she losing her hair with it? Oh wait, she may have lost her hair with WBR? If it comes to a point where I have to do IV chemo, I just don't know.

    Susan, yay for an empty bottle! Now for some good scans.

    Sandi, I'm on 3000 mg 14/7. My bottle will be empty on Sunday. And I just may skip that Sunday night pill. I will be taking a 2 week break soon, as I am traveling to MI to see family. My mother doesn't know that I have cancer again. Funny story…when I was there last, she asked me what was wrong with my hands. I said it's from working outside and gardening and such. Well, I was on my week off, and I may have taken 2 weeks then, so my hands started to get a bit better. On another day, she says "oh your hands are looking better. I thought maybe you had a disease or something!" My onc got a chuckle out of that.

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

    Writing quickly from work. Got my scans this am. Bone mets stable. Liver and thoracic mets decreased in size significantly. So I can deal with Xs Se's easily knowing it's working- and it's not easy at all! Will catch up on posts later. Just wanted to share my good news!

    Bab

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

    Babs, significantly decreased in size, whoop whoop. Congrats!

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

    Whoooohooooo! Madame X has done her job!

    *susan*

  • oriole
    oriole Member Posts: 18
    edited February 2016

    Barbara...I am SOOOOOOO happy for your great result! Xeloda is working! You deserve to celebrate!!!!!!!

  • gciriani
    gciriani Member Posts: 195
    edited February 2016

    Goldie: weekly infusion. You guessed it right, the hair was lost during WBR, but the chemo is doubling down and claiming eyelashes, eyebrows etc.

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