All about Xeloda

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Comments

  • lizo1
    lizo1 Member Posts: 94
    edited June 2020

    Thank you Denny and Lynn.

    Denny - Yes, bicalutamide is a prostate cancer drug. Liz's mets are triple negative but they were positive for androgen receptor so they are going to give this a try. Her onc wants to try Ibrance but Liz is ER- so the drug isn't covered. We are looking into options for Ibrance.

    Grant

  • JoynerL
    JoynerL Member Posts: 1,392
    edited June 2020

    I think that I sent that link in the wrong format. The website is: Practice Update. I wandered into it while doing research on another article or subject.

    Somehow, I configured my interest on the site as "Metastatic Breast Cancer", and I get a link to their new articles specific to that subject. I signed up as a "Consumer/Other", I think.

    https://www.practiceupdate.com/



  • Kattysmith
    Kattysmith Member Posts: 688
    edited June 2020

    Grant, I'm wishing you and Liz all the best as she moves to another treatment.

    Katty

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    Grant, I will be following Liz's next treatment journey, so please keep us posted.

  • denny123
    denny123 Member Posts: 1,529
    edited June 2020

    Grant-very interesting! My last clinical trial was for lung cancer and worked for my BC. When I had Gemzar 18 years ago for liver mets, it was really for pancreatic CA. Amazing how the chemos work for diff cancer.

    Prayers for her and you!

  • nayda985
    nayda985 Member Posts: 270
    edited June 2020

    Xeloda isn't working for me😖. Last Petscan showed progression. To lungs and lower back. I am so sad. My onc is changing me gemzar and something else. All could hear from him is progression at that time. You all are very sweet and thank you.

  • Kattysmith
    Kattysmith Member Posts: 688
    edited June 2020

    Nayda, I'm so sorry to hear that you have progression and wish you all the best on Gezmar.

    Katty

  • Kathleen9440
    Kathleen9440 Member Posts: 15
    edited June 2020

    Good Morning, Everyone -

    As always. thank you all for your advice and support. Awesome job, folks!

    Now, a Xeloda/Capecitabine update, a question and some advice.

    First off, halfway through my second cycle my onc has pulled me from the Xeloda/Capecitabine for the duration of the whole brain radiation for the brain mets, 2 weeks. Xeloda/Capecitabine side effects dry skin on feet, watery eyes, heartburn but other than that very tolerable. Still on the steroid Dexamethasone for the brain swelling but at a lower dose. My oncologist plans to put me back on the Xeloda/Capecitabine when the WBR is over along with Abraxane chemo - I tolerate that one very well - continuing my current Letrozole, Fasladex and bi monthly Zometa.

    My question is this: Anyone here with experience with the Abraxane/Xeloda/Capecitabine combo? Not a lot out there, but I do notice that great many of you have had this combo in one form or another was wondering at your reactions and results. My first round of Abraxane went the full 12 months and I was more than a bit anxious for information in its working alongside Xeloda/Capecitabine.

    I'd be grateful for any advice.

    Lastly, my advice. This is just me but my mind tends to zoom when new information is offered and roadblocks introduced. I keep having to tell myself to slow down and think, which is pretty big task. My appointment yesterday with my onc was a bit disappointing in that, by not listening the first time around I got my numbers and information a bit skewed. Turns out I'm only a possible candidate for the new Xeloda/Capecitabine and Tukysa/Tucatinib along with Herceptin/Trastuzumab regimen. I'm HER2-Negative, not Positive so pending genetic testing for mutation - which is a bit of a catch-22 - we're going with the Araxane/Xeloda/Capecitabine.

    I need to slow down and breathe... <sigh>

    Thanks again, everyone! Be safe and be well!

    - Kathleen


  • denny123
    denny123 Member Posts: 1,529
    edited June 2020

    Nayda-Sorry! Gemzar was very easy for me and did a great job on my numerous liver mets! Please keep in touch!

    Kathleen-I am on Xeloda and Herceptin. My onc is very excited about Neratinib! I was Her2+++, but my recurrence turned into Her2- Somatic. So if/when I have another recurrence, I would have to have Foundation One testing again to see what my new dx is. Good luck!

  • snooky1954
    snooky1954 Member Posts: 850
    edited June 2020

    Nadyda, I'm so very so that you have to change TXs. I may soon be in the same position which is sad because I may soon be in the same position.

    I have scans this coming Mon. May I ask for prayers? I have an Onc apt Wednes so not too long to wait.

  • denny123
    denny123 Member Posts: 1,529
    edited June 2020

    Snooky-prayers going up for you!

  • Kattysmith
    Kattysmith Member Posts: 688
    edited June 2020

    Snooky, prayer flags are flapping in your direction and bells are tinkling to let our universe and your friends here know you need our support and best wishes for a good outcome!

  • snooky1954
    snooky1954 Member Posts: 850
    edited June 2020

    thanks so much............read this american cancer society has had a budget cut, so 1000 jobs are being elimated. This is pathatic

    https://abcnews.go.com/US/american-cancer-society-eliminates-1000-jobs-amid-covid/story?id=71211646&fbclid=IwAR2Mpg6nUXK6EkmBeeRAObOqz40P_mjepQpSyxnDLbP4HxIYxRRvL3NTu0w

  • denny123
    denny123 Member Posts: 1,529
    edited June 2020

    I feel bad about the cuts. I have been a Reach to Recovery volunteer counselor for the ACS for 18 years. I do it on my own now, but my first "boss", who is now a good friend, has had her job eliminated.

    And we had an "Our Clubhouse" in my county and it had to close, as well as the one in Pittsburgh, PA. The Pittsburgh one will open again eventually, but I don't know about our local one.

    And I also ran a breast cancer support group at our hospital. I don't know if we will ever get it going again, since I am so high risk and don't want to leave my house. And no one else wants to take it over.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    Hi. It is the outside of my heels that are the worse, so shoes in general irritate the sides of my foot..

    So...I masked up and went to Dollar Tree and bought a $1 pair of flip flops and wear them with my toe socks, mainly indoors.

    Feels great. Ha.

    image

  • denny123
    denny123 Member Posts: 1,529
    edited June 2020

    Sandi-LOL. I dare you to wear those shopping...when it is safe to do so...!!!

  • NMJanet
    NMJanet Member Posts: 16
    edited June 2020

    Hi all! I'm new to this group and using Xeloda. I have a couple of questions and I apologize if they've been answered on other pages. Brief history: breast cancer 12/10; lumpectomy; metastasized to bones in 2014. Took Arimidex with Xgeva for several years. Switched to Ibrance and Faslodex and it also worked for about 2 years. Put on Piqray 1/2020 and almost died. No one was monitoring my blood sugar until I became semi-comatose. Taken off Piqray, had radiation to the spine, then scans showed progression to liver and peritoneal cavity along with developing ascites last month. Just finished first cycle of Xeloda. I felt like I was improving slightly--stopped losing weight, less abdomen pain. Had new blood tests this morning and got a call from my doctor an hour later. Never a good sign... : ) Liver results are rising and now kidneys are showing some problems. He isn't sure what is happening. Thinks it might "possibly" be the medication but doubts it. Also doesn't think the liver tumor is big enough to cause the problems he's seeing. I see him on Thursday and will get new blood tests. He said if things aren't better, he's sending me to the hospital. Yuk. Questions:

    1. The info on Xeloda says not to take it if there are liver issues. Is anyone taking this for liver metastases?

    2. Are there better drugs for liver metastases?

    3. Has anyone else had their liver/kidney function test results increase before medicine started showing improvement?

    Thanks for any ideas and/or suggestions! I need to have some insight before seeing him on Thursday and discussing what to do.

    Janet

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    Janet, I was put on Xeloda for liver mets. It is still a new drug for me and so far, my BUN and creatinine have stayed normal. My liver enzymes have returned to normal. Lab work this week to recheck.

    Did they biopsy your liver mets to make sure you have not changed your hormonal status? Could your bile duct be involved?

    Please keep us posted.

  • denny123
    denny123 Member Posts: 1,529
    edited June 2020

    Hi Janet, Welcome! Sorry for all that you have gone through. I had numerous liver mets 18 years and and Gemzar with Herceptin cleared them out in 9 months.

    I have been on chemo for over 18 years, and currently NED.

    I am not sure, but I do think that Xeloda can help liver mets. But the are a lot of chemos that work very well on the liver.

    Prayers for you!

    Denise

  • Kattysmith
    Kattysmith Member Posts: 688
    edited June 2020

    Hi Janet,

    I was put on xeloda in November 2019 for my extensive liver Mets - nothing else was working. So far it has been very effective and bought me some time. I know that liver toxicity can be an issue but my only problem so far was when one of my liver values was very elevated in January so I was taken off Xeloda for a couple of weeks then retested and everything was normal. No problems since then.

    I'm on 1500mg twice daily and switched to a 7 Days on 7 days off schedule a couple of months ago, which I much prefer to the 2 weeks on 1 week off schedule.

    I am also ER/PR+ HER2- and also had two successful years on ibrance and letrozole.

    I'm glad that your doctor is seeing you again so soon and hopefully you can get to the bottom of this! If you are hospitalized hopefully they would run a battery of tests to see what's going on.

    Keeping my fingers crossed for you and please keep us posted on what happens.

    All the best,

    Katty

  • NMJanet
    NMJanet Member Posts: 16
    edited June 2020

    Thank you so much for your replies, ladies! Your answers have reassured me about taking Xeloda for liver mets and I'm happy to hear you've had good results.

    No, Sandibeach, they did not do a liver biopsy. The doctor did mention there might possibly be some obstruction but didn't go into it.

    So happy for you being NED, Denise! I can't imagine 18 years!

    Katty, he started me on a low dose of 1000mg twice a day but he had planned on increasing it this next round. I still feel like I haven't fully recovered from the Piqray fiasco so we were taking it a little slower. Even at a lower dose, 14 days felt a little rough by the end (mostly fatigue and constipation) so I had planned on suggesting the 7 on, 7 off to him.

    Hoping for better results Thursday and I will update. Thanks again!!

    Janet

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    NMJanet, I am on 2000mg/day..7/7.

    We will see how it goes with my liver mets with MRI this week!

    Hope you feel a tad better.

  • Kerwinklark
    Kerwinklark Member Posts: 2
    edited June 2020

    My mom is currently on Xeloda, although the oncologist plans to switch treatment next week. The drug is surprisingly very mild, although I noticed that she gets more bloated when she is taking the meds.

    Uhm. Yes, she has liver mets so I was wondering if that was the chemo drug trying to halt cancer growth.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    Kerwinklark. This site is helpful to look up side effects on capecitabine.

    www.chemocare.com


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    Hello. My recent MRI showed that Capecitabine (Xeloda) is working. Liver mets are reducing in size. Ca15.3 also continues to decrease.

    I have had 3 dose reductions: 3300 original, 2800, 2300, 2000 mg/day in a 3 month period.

    To ensure efficacy, I will add 150 mg at next cycle and monitor SEs. If that goes well, will add additional 150mg/day at the next cycle. If that also does well, will stay at that dose.

    Edited to say that I will continue on 7 day on/ 7 day off and my cycle is a 4 week period. ( as opposed to 14/ 7 on 3 week cycle)

    I am negative for DPD enzyme.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    I have osteoporosis, diagnosed before Stage IV dx and prior Letrozole use (which made it worse).

    I was on Prolia (denusomab) injection every 6 months. There is known interference with this drug and capecitabine.

    I will be switched to Zometa (biphosphonate), IV, every 3 months.

    Anyone else had this happen? I am not being treated for bone mets.

  • denny123
    denny123 Member Posts: 1,529
    edited June 2020

    Sandi-I am Prolia.....how does it interfere?

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    Denny123. My MO said something about increased risk of infection and wanted me to switch to IV Zometa.

    I guess I didn't question it. It was nice to have 6 month shot and it helped my osteoporisis. MO said Zometa would be good, too.

  • divinemrsm
    divinemrsm Member Posts: 6,585
    edited June 2020

    Sandi, I could never wear toe socks, too uncomfortable! I’m impressed that you have an easy time with them! I like Denny’s dare to wear the fashion to the store, haha! It's great to hear that you're having a good response to Xeloda. Happy for you. I've not had scans yet.

    My feet are hanging in there. When I went to buy the suggested gel footies, I saw they also had gel heel sleeves that don’t cover the toes, and I got those instead. They work great. Plus they’re cute.

    I have a little bit of peeling on both my index fingers. I baby them.

    My blood work is the best it’s been in a long time, almost everything in normal range and if not, very minor out of range. Onc doesn’t do tumor markers. I am finding Xeloda very tolerable. I just don’t know yet if it’s working. Would love that it would be.



  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited June 2020

    Divine..the bottoms of both feet peeled, like a bad sunburn. Dose reduction greatly helped. My hands seem to be not affected. Strange.

    I am worried that I am undertreated now that I am 2000mg/day. My MO is willing to add 150mg for next cycle and see how I do. Then if okay, to add another 150mg.

    She said my ca15.3 is a good indicator for me. My labs are normal, except platelets tad low at 105k. My white count has been the highest in 3 1/2 years..5,500!!

    I feel well..which makes me nervous. It is like I need SEs to reassure the drugs are working.Ugh.

    I was SO relieved to see on my MRI report that no new liver mets and the largest ones have decreased. Of course, I was on those high Xeloda doses initially.

    Ok..rambling. Just want this drug to work for at least a year so I can pretend that I am normal.