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All about Xeloda

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Comments

  • Lita57
    Lita57 Member Posts: 2,338
    edited December 2016

    Thanks everyone. Haven't tried steroid creams for hfs yet.

  • AmyQ
    AmyQ Member Posts: 821
    edited December 2016

    Thanks all for your responses.

    The specialty pharmacy where I get X has a pretty helpful representative department charged with calling every 3 weeks to check on their patients. Mine called yesterday and we had a nice 30 minute conversation. During that call he mentioned a patient he had spoken to recently who's been on X for 11 years! Wow, to be so lucky. I found that to be very helpful and uplifting. I know there's always going to be those super-responders or outliers but this was great to hear.

    Just wanted to share the "hope"

    Amy


  • Lita57
    Lita57 Member Posts: 2,338
    edited December 2016

    Thanks, Amy. That's great...eleven years on Xeloda.

    My MO is thinking about switching me to Aromatase Inhibitors in February. She's only going to do that if I'm "stable." If there's progression, I'll have to go on a stronger IV chemo. So fingers crossed in that regard.

    Her rationale is that she wants to see how I do on AI's...if they knock Mr. Cancer back or not. We can always go back to X if those don't do the job.

    Here's to happier, healthier days in 2017.

    Keeping you all in prayer for minimal SEs and stability.

    Lita


  • Kaption
    Kaption Member Posts: 2,934
    edited December 2016

    I just shared on the Faslodex board that I'm leaving them and joining you all on xeloda. Faslodex only gave me seven months- so I'm bummed about that, but hoping Xeloda da is the good one for me. To be honest, I'm worried about the se. Actually I'm being considered on a clinical trial that compares the stand dosage to another one. The test group will be doing 7 days on 7 off, which it seems like I've read some of you are already doing. Maybe it's a different dosage. I'll be learning more late next week.

    So, I'll be hanging out here-learning from you experts

  • husband11
    husband11 Member Posts: 1,287
    edited December 2016

    I read about a University of Kansas trial for different dosages and timing for xeloda. I believe they will using 1500mg flat dosing twice a day for the 7 on 7 off. For the 14 on and 7 off arm, they will use a dosage based on body surface area, 1250mg/M2, also twice a day.

    Typically dosage is based on a dosage per square meter of body surface area, which they calculate based on height and weight using a formula. Some treatment centers like U of South Calif Medical don't vary the dosage with body weight and use a flat dosage of 1000mg / 2x daily. They believe they get equivalent results and better compliance due to lower side effects.

  • Kaption
    Kaption Member Posts: 2,934
    edited December 2016

    That's the one, Timothy.


  • AmyQ
    AmyQ Member Posts: 821
    edited December 2016

    I honestly don't think my MO is using the body surface area for dosage as I'm at my perfect weight or slightly less for my 5 foot 5 inch frame as I'm on 4000 mg/day for 14 days on and 7 off. I think she wants to really kick my progression in the butt and see how I fair. Will not know much until mid January when I have blood drawn for the first time.

    Kaption I hope X is good to you. I hated having to discontinue Faslodex, although I certainly don't miss the shots, especially when a nurse was impatient while administering. Anyway, good luck to you and all the others on it.

    Amy


  • Kessala
    Kessala Member Posts: 91
    edited December 2016

    AmyQ, the Xeloda dose you're on at 4,000 mg twice per day apparently IS correct for your body surface. I'm 5'5" and weigh 117 lbs. I was started on 4,000 mg on a 14/7 schedule at first too.

    Since it seemed overwhelming that I had to take EIGHT Xeloda tablets per day I asked Oncologist if this dose was too high for me. She confirmed it was correct for someone my size.

    I lasted 11 days of my first Xeloda cycle. First my feet tingled as I walked - like pins and needles. By the next day I couldn't put my weight on my feet due to pain. It was a holiday weekend so I made my own decision that my dose was too strong and stopped taking Xeloda. I phoned Clinic to leave voice mail with this information. Oncologist happened to be on-call that weekend and she agreed I should stop Xeloda until my foot pain stopped.

    It took seven days for that foot pain to die down enough for me to walk normally. Seven days. No OTC or prescription pain meds touched the pain. I simply had to limp around here for an entire weeks time.

    I've had two dose reductions since starting Xeloda due to bad HFS. Now I'm taking 2,000 mg per day on a 7/7 schedule because of bad HFS.

    Long story short, if you feel anything weird about your hands or feet call your clinic right away. 4,000 mg of Xeloda per day is a big, big dose for someone your size. In hindsight I wish Oncologist had started me on a lower dose and see how I tolerated it before possibly adding more. After all, Stage IV patients are not being treated in an effort to cure. It was a hellish experience to be hobbled for an entire week. I couldn't leave the house! I had to hang onto furniture to get from room to room! My feet were not usable!

    Kessala

  • Kamala1962
    Kamala1962 Member Posts: 14
    edited December 2016

    Timothy wrote:

    "I read about a University of Kansas trial for different dosages and timing for xeloda. I believe they will using 1500mg flat dosing twice a day for the 7 on 7 off. For the 14 on and 7 off arm, they will use a dosage based on body surface area, 1250mg/M2, also twice a day.

    Typically dosage is based on a dosage per square meter of body surface area, which they calculate based on height and weight using a formula. Some treatment centers like U of South Calif Medical don't vary the dosage with body weight and use a flat dosage of 1000mg / 2x daily. They believe they get equivalent results and better compliance due to lower side effects."----------------------------------------------------------------------------------------------------------------------------------------------

    My sister only made one 14/7 cycle at full dose of 3600mgs. Then it was 3000 at anywhere from 10 to 12 days. The SE's were too much and her Onc was concerned about the quality of everyday activities. There are studies overseas of a straight dose of 1500-1800mg with no days off. This drug has wide usage window.

  • tyche66
    tyche66 Member Posts: 8
    edited December 2016

    Have people seem serious shrinkage of tumors quickly on Xeloda? I could use a lot of rah-rah, wee-wee, pep stories.

    I just found out that the 7 weeks I was waiting to find outif I qualified for immunotherapy it turns out my two lung tumors grew from 8 cm to ~15 and 16 cm. They are crushing my right lung's bronical tubes and are applying pressure on my windpipe. I know I'm in deep trouble, so if people can give me any hope on how much shrinkages they have seen or anything would be positive.

    I have done one 2 week cycle of Xeloda (i have 2 weeks off) and it does seem to have helped with the plural effusion. They want to do another CT scan after I finish my 3rd cycle.

    Zoe

  • AmyQ
    AmyQ Member Posts: 821
    edited December 2016

    Kessala,

    Thanks for your feedback. I finish my last 4 pills this evening and then have a one week break...so far so good. Sorry you had to suffer for an entire week. That sounds unbearable.

    Zoe, gosh, I'm sorry for your lung mets progression. I can't answer your question about how quickly Xeloda works - everyone is different and their responses are too. I hope your next scan shows a serious regression.

    Amy

  • Lita57
    Lita57 Member Posts: 2,338
    edited December 2016

    Kessela, 4000 per day was way too much for 117 pounds. My MO started me on 4000 per day when I weighed 185. Now I'm down to 165 and she dropped me to 3000 per day. I do agree that it might be better to start us off on a lighter dose to see how we handle it first. I had a lot of diarrhea and hfs at the higher dosage. Now I'm 7 on and 7 off. Seems to be much better in terms of se's.

    Lita


  • JFL
    JFL Member Posts: 1,373
    edited December 2016
    Zoe, I am sorry for your progression. There are people who respond pretty quickly.

    (I have repeated this so people on this thread will be hearing it again). X worked quickly for me. By 3 month PET scan after starting X, my liver mets substantially decreased and were metabolically inactive. When I started X, my left lobe was described on my PET scan as consisting almost entirely of metastatic tissue, with innumerable tumors in the right lobe including tumors up to 7cm if I recall correctly. By 6 months, my tumors shrunk so much they no longer call out the size of any of them in the PET scan results.

    I was in a worse position with my liver progression when I started X compared to initial dx but my current liver status looks better than it ever did with my first line treatment (which worked very well for me also).

    I hope it shrinks those big bully tumors of yours.
  • Stilts
    Stilts Member Posts: 228
    edited December 2016

    Zoe...I am on my 10th cycle of Xeloda...TMs decreased 90% and my 4 month PET CT showed significant improvement of bone mets...my ONC has had patients doing well on X for years. Hang in there

  • tyche66
    tyche66 Member Posts: 8
    edited December 2016

    JFC and Stilts,

    Thank you so much for the encouragement! I'm so terrible frightened right now (nurse practitioner started talking hospice to me when I was there on Thursday) and I was only diagnosed Oct 31 and I've done 2 weeks of Xeloda so far. I want to at least fight and I'm hoping something will happen quickly so I don't have to be put on hospice less than 3 months after being diagnosised Stage 4.

    My onocologist doesn't do TM... mine were normal when I original was diagnosed Stage 2A three years ago.

    Thank you so much,

    Zoe

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

    Zoe- my liver was so full of cancer upon my metastatic disease diagnosis that the liver specialists said they couldn't help me. Xekida cleared it all out.

    4 years later I'm still here.

    May it work as well for yo


  • AmyQ
    AmyQ Member Posts: 821
    edited December 2016

    Zoe, your last post made me catch my breath...I cannot imagine hearing that hospice might be your only option after only a few weeks. Good grief. I would complain to your oncologist about the very poor bed-side manner of the NP and possibly consider finding another doctor or clinic. No wonder you're scared out of your mind, I would be too.

    Good luck to you and keep hoping. I keep reading about X being so very good for soft tissue and bone mets. I'd like to restate what I was told just a few days ago about a patient who's been on X for 11 years and doing great.

    Amy

  • Lita57
    Lita57 Member Posts: 2,338
    edited December 2016

    Zoe, Amy Q is right...that NP should not have dismissed you with suggestions of starting hospice now. That's just unconscionable. Xeloda has indeed done wonders for women. I have mets to my liver, pancreas, kidneys, bladder and abdominal wall, PLUS spine, pelvis, hips, ribs....and I'm still here. When I was first dx'd with all these mets, I too was scared to death. After 8 1/2 months, the organ mets are stable. I still have back pain, but I also have compression fractures, bulging discs and degerative arthritis in my spine. Don't throw in the towel yet, Zoe.

    Lita



  • Kaption
    Kaption Member Posts: 2,934
    edited December 2016

    Leftfootforward, you give me much hope for leaving Faslodex (my third fail in 3 years) and joining the X group!

    I bet you have some good tips. I've already learned a lot from lurking here since my MO mentioned x.

    Good health to all in the new year!


  • tyche66
    tyche66 Member Posts: 8
    edited December 2016

    AmyQ and Lita and Leftfoot,

    Thank you so much for the encouragement and I'm so happy for you that you've been able to have success with Xeloda. It's such wonderful news!

    The first night with oxygen I didn't sleep well (I think it was because I keep thinking about hospice) but I managed to get 7 hours last night which is amazing so I think I'm calming down... just a little white knuckling here and there.

    I have been researching like crazy about which chemo drug will work best but it gets so confusing after awhile with all the conflicting research and studies... and I'm not a dumb bunny either.

    Hugs, Zoe

  • lulubee
    lulubee Member Posts: 903
    edited January 2017

    Well, friends, I am moving on. I think I might be the second-longest running Xeloda gal here (39 months of NEAD) but two recent PET scans confirm that I now have both reactivated old mets and scattered new progression in multiple bones. I will be starting on Ibrance + Aromasin as soon as we can jump through some hurdles with my new insurance carrier. (Right now, I can't even get in to see my oncologist of a decade, because BCBS is requiring me to get a referral from a PCP to continue to see her... ridiculous... and the PCP that BCBS referred me to has refused to see me because she only treats assisted living patients... annnnnd I can't get in to see any of their other approved PCPs because of the holidays.

    SHEESH, as if this isn't hard enough already?

    I am rattled and afraid right now, of course. But X was my fourth line of treatment, so this is not my first rodeo-- I am sure I will manage somehow to dust off and get back up on the raging bull here in a few days. It's what we do.

    Anyway, dears. I have received so much lovely support and encouragement from the ladies and gents on this thread, and I thank you all for that. I will check on this thread from time to time and will continue to pray for you all to do very well on Xeloda for a very long time, as I have.

    I hope I have been helpful to some of you as well. I have shared here a good bit of what I have learned about Madame X over these three good years of navigating side effects, supplements, foot care, etc. I hope future newbies will know to do searches in the archives of this thread for helpful suggestions, because we've covered a lot of good ground here in recent years.

    Much love and best wishes for all in the new year! See you around the boards.

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2017

    Lulubee- best wishes. May your next treatment give you many years

  • Fitztwins
    Fitztwins Member Posts: 144
    edited January 2017

    Lulubee, 39 months is amazing. I have never been NED. It is scary to switch. What about getting one of your spots biopsied? maybe you pathology has changed.


    I am just finishing off my 3rd month of Madame X. Tumor markers went up this month 14 points, I am on a super low dose. Only 4 pills a day..


    AND the only side effect I am having is tingling fingers and my hair thinning (which it did a lot in the bald man crown) I already was thin up there.

  • rpoole1962
    rpoole1962 Member Posts: 386
    edited January 2017

    Filtwins, I was on the low dose of 4 pills a day and had my pet scan last friday. My liver met continued to grow. My oncologist wanted to change me to the AA combo, but I talked her into upping my pills to 5 a day. She is giving me 2 weeks, and if there is no change then I am on to something else. I had such high hopes for this drug. I hope it is working for you!

    Robin

  • JFL
    JFL Member Posts: 1,373
    edited January 2017

    Lulubee, 39 months is amazing! I hope your next treatment works just as long, if not longer. I can't picture myself ever being NED.

    Fitz and Robin, I hope your rising tumor markers are just initial flare. Mine rose for a few cycles and then went down, and then went up again around the three month mark. Not indicative of progression for me, just flare.

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2017

    I'll start googling some suggestions but in the meantime wondered if anyone has a suggestion for a lovely SE which just developed over the weekend. My bottom lip is swollen and blistered and quite painful. I tried putting an aloe vera cream on but it only burns. Although the inside of my mouth and tongue and tingly, so far they're manageable.

    Sure would love some relief from the pain and discomfort of my lip. I hear it's what your skin does with hand foot syndrome but I've got it on my lip. Yuk.

    Thank you all -

    Amy

  • JFL
    JFL Member Posts: 1,373
    edited January 2017

    Amy, I have found that Lysine helps significantly. It plays a role in skin health somehow. I found the suggestion on a colon cancer Xeloda Board. My MO is okay with me taking it. I take a 1000mg pill a day and during the time my inner lower lip and area in mouth below thatgets raw/sensitive each cycle, I take 3 pills per day of 1,000mg. Went from extreme discomfort/pain/sensitivity/raw skin to minor sensitivity to spicy foods, Listerine and mint toothpaste. I use kid's bubblegum flavored toothpaste and switch to Listerine without alcohol during those times.

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2017

    HI JFL and thanks for the suggestion. I'll ask my MO -

    My son went to the drugstore and bought me a jar of old-fashioned Vaseline petroleum jelly which I have slatthered on my lip and its helping but I'd rather not have the problem in the first place.

    Thank you so much!

  • kachincolor
    kachincolor Member Posts: 62
    edited January 2017

    Happy New Year to All Xeloda Sisters!

    Has anyone had issues with staying with the same generic? I just received my 12th round of pills and they are pink and produced by West-Ward? All previous doses were produced by Mylan. Since my TM are dropping and my latest scan showed modest improvement in my bone mets (stable liver mets) I am freaking out a little about the change. Anyone who has experience with West-Ward Xeloda generic?

    Thanks you so much!

    Kimberly

  • AmyQ
    AmyQ Member Posts: 821
    edited January 2017

    These generics drive me crazy! I don't have any Xeloda experiences to share but only ask that you keep close record of what you're getting and if you find your product is sub-standard in any way, return to the pharmacy and ask for the replacement.

    I did this with my last batch of Gabapentin and after sorting through the different manufacturer versus distributor, I think I finally have the best resource. The pharmacists were happy to exchange my sub-standard pills for the stuff that works (less side-effects) at no additional charge. Not sure if these specialty pharmacies work the same way but good luck to you.

    Btw, stay warm - it was negative 21 wind chill this morning with a low of minus 9, at least where I am.

    Amy

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