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All about Xeloda

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  • divinemrsm
    divinemrsm Member Posts: 6,573
    edited June 2022

    rk, interesting about B6, I hadn't heard about its use for hfs before. I am intrigued, so I just ordered some, a low dose of 50mg. Xeloda is currently working for me so I don't want to mess up the sort of equilibrium of my body (that’s why I chose a low dose) but I read up on B6 and it's possible I might benefit from it. I get bloodwork every month, and when I begin new supplements or increase their dosage, I can often see the effects on the blood work. Presently, I take Vitamin D3+K2, and a low dose of Calcium supplement. I've taken multivitamins before and curcumin and higher doses of Calcium. As I go on to different treatments, I find it necessary to adjust what supplements and dosages I take. In your opinion, what dosage do you think is effective for B6?

  • rk2020
    rk2020 Member Posts: 697
    edited June 2022

    divinemrsm- I don’t take a lot of supplements. I currently take calcium + D3. I started 100 mg of B6 about 5 weeks ago. My feet are extra sensitive to cancer drugs because I still have a bit of neuropathy left as a parting gift from Taxol. It took 2-4 weeks to feel an improvement but I definitely have less burning and peeling. Thankfully I never had any cracks or blisters

  • wren44
    wren44 Member Posts: 7,921
    edited June 2022

    Hi everyone. I'm new here. Diagnosed 6/7 with stage IV, mets to chest wall. I started Xeloda last night. They prescribed letrozole because I was going to start Ibrance, but I'm not sure if they'll want me to continue on that. My main problem as been a pleural effusion which requires draining about once a week. I'm going to get a permanent drain I can manage at home next Thursday. I recognize a few names from other threads, so I feel I have some friends here already.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    Wren— welcome but also sorry you find yourself here. Hope you find many successful treatments that carry you many years.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    It’s official. After seeing my MO last week, I am being moved to Xeloda. Hoping to get some time out of this treatment.

    Awaiting insurance approval on the chemo. MO expects that to happen next week.

    So.... after stopping all current meds from previous treatment, am trying to enjoy this weekend as I slowly feel like I am returning to the way I felt before MBC diagnosis. Feel like I can eat what I want instead of what I can tolerate. Fog and fatigue is gone.

  • kbl
    kbl Member Posts: 2,919
    edited June 2022

    Hi, wrenn44. I’m sorry you have to join here, but I hope you find Xeloda very helpful.

    DodgersGirl, I’ve been on Xeloda 8 months now after Ibrance and Letrozole for two years. I’m also on Faslodex. It seems to be working so far, as my tumor markers came down a few hundred points. I hope you get lots of time on it. I feel it’s been better than Ibrance in side effects for me.

    I had put Xeloda in my meds for description, but when they changed the site, it went away, and I don’t know how to get it back in.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    KBL— Thanks.

    Hope the HFS is tolerable. Time will tell

    As long as Xeloda is helping, I will work to figure out work arounds for SE.

  • kbl
    kbl Member Posts: 2,919
    edited June 2022

    Yes. I had a little crack in the bottom of my heel this time, but I’m still able to walk.

  • pirate_girl
    pirate_girl Member Posts: 31
    edited June 2022

    Hi all -- I need to share some good news (I think) with folks who will understand. I started capecitabine at the beginning of Feb., so I've been on it for about 5 months. My CA 27.29 went from a high of over 2600 (right before I started this) to 57 at my last blood draw 2 weeks ago. Yesterday I had a CT scan and cervical / thoracic MRI -- I have some ongoing bone issues per the MRI, but my CT report says "Pseudocirrhotic morphology of the liver with near complete resolution of previous numerous bilobar hypoenhancing lesions. There are multiple small wedge-shaped hypodensities in place of the previous enhancing lesions, which may represent posttreatment change." I am pretty sure this means the capecitabine is beating back my liver mets ! (I don't meet with my MO for another week or so to get the official interpretation.) I have been fortunate so far to have minimal side effects, and I am feeling better on capecitabine than any other treatment over the past 2+ years. Here's hoping it keeps working. Thanks for letting me share.

  • kbl
    kbl Member Posts: 2,919
    edited June 2022

    pirate_girl, wow, that’s great news. What a drop. I have been on Cape since September of last year. My tumor markers were 374 and went down as low as 105, but went back up last month. It’s really doing nothing for my spine lesions, but I think it’s helping the mets in my stomach. I’m able to eat, so that’s good.

    I’m so happy for you. I have to agree Cape is not so bad. I do like it better than Ibrance.

    I hope along with the number drop,you also feel better and are able to do more things.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited June 2022

    Fabulous news, Pirate!! Yippee!!

  • wren44
    wren44 Member Posts: 7,921
    edited June 2022

    So nice to hear it's working so well, Pirate Girl. I'm hoping for the same.

    Yesterday I had dry heaves to the point that they gave me Zofran before a surgical procedure to place a Pleurex drain. This morning I took a Zofran when I got up and a pain pill (for yesterday's surgery) and am feeling pretty good. Oncology had not given me any Zofran, so I was very grateful that the surgery people gave me some to take home. I've only been on Xeloda for a week and I guess the nausea was building up over that time.

    Next week I have only 1 medical appt to have stitches out. Yay! Time to do other things.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited June 2022

    Great news pirate_girl. It looks like Madame X is continuing to work for me as well although the change is more muted. According to the GP-oncologist my scan was stable with some improvement to the tight kidney. After back to back fails, I’ll take it!

    Wrenn, if you have pleural effusion that could be the cause of the nausea. I had terrible nausea when my right lung was full of fluid. Once it was drained things improved considerably. Zofran is great for nausea but constipates the heck out of me! I always thought it could be used as a weapon…

  • wren44
    wren44 Member Posts: 7,921
    edited June 2022

    Thanks for the warning about constipation. My oncology pharmacologist just sent me the same warning. It could have been the effusion although it hadn't had that effect before. I've been having it drained almost weekly.

  • pirate_girl
    pirate_girl Member Posts: 31
    edited June 2022

    kbl, joynerl, wren44, sadiesservant -- thank you all for your kind words of support -- it really does help to share this kind of news with those who understand how significant a good response to treatment is, especially after several treatment failures -- here's hoping capecitabine will continue to work for all of us taking it at this time

    wren44 -- very sorry to hear about the nausea -- I hope it resolves soon and that capecitabine works well for you

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    Wren- whenever I would take Zofran previously, I always included Colace to try to avoid constipation

    My update—looks like my Capecitabine will arrive Tuesday so I will be joining you guys Wednesday. My MO is strictly by the book (doesn’t thrill me as my old MO worked with on treatments) so I will start at 14/7 dosing schedule

    Thanks everyone for sharing tips, SE, and outcomes. I SO appreciate it!!!


  • pirate_girl
    pirate_girl Member Posts: 31
    edited June 2022

    Dodger -- good luck w/ starting capecitabine. I am on 7 days on / 7 days off schedule -- 3000mg / day (3 pills in the am, 3 pills in the evening). I recommend asking again about the 7/7 schedule -- it's a recognized approach that seems to have fewer side effects than the 14/7. I don't have the studies handy that discuss it, but if I find them I'll send them to you.

  • rk2020
    rk2020 Member Posts: 697
    edited June 2022

    Pirategirl - Woohoo for your awesome results! Celebrate! And thank you for the 7/7 links. Now that I’m doing so much better, my doctor wants me to reduce my dose 500 mg a day to see if my QOL goes up. I feel like compared to the SE of other meds I’ve been on, madame X is a cake walk. Of course, even less is better but that makes me nervous. I might suggest a 7/7 schedule instead.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    thanks for the links. I was told no variations, They only follow NCCN guidelines. I assume it’s to lessen law suits???

    My medical center dropped my major insurance carrier leaving me (and thousands others) having to move to a different cancer center. It sucks.

    I will fight though. Not shy about talking back. They want me to start 14/7 so there I am.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    pirate_girl— links saved

    Thank you.

  • kbl
    kbl Member Posts: 2,919
    edited June 2022

    I’m also on 7/7. That’s what was suggested to me by my oncologist right from the very beginning. I would try the 14/7, but if there are issues, I’d just tell them nope, 7/7 for me.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    KBL— yep, that’s the plan.

    In 5 days I am on Medicare due to 2 years of SSDI so I could go back the the cancer clinic I started at

    It’s nice to have op

  • kbl
    kbl Member Posts: 2,919
    edited June 2022

    That’s awesome. So sorry, I didn’t mean that to suggest what you should do but what I would have done. I’m glad you get to switch back. The other thing I like about Xeloda is the cost is between $15 and $35, so much cheaper than Ibrance.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    kbl— no need to be sorry. I appreciate comments from others. I learn so much.

    My cost for Cape is going to be $8 for 14 days. Quite affordable. Now will see what costs are next month when insurance gets reconfigured.

  • kbl
    kbl Member Posts: 2,919
    edited June 2022

    Oh, that is a great price. What insurance company did you pick? I have Humana Medicare Advantage

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited June 2022

    KBL- after weeks of working with insurance people, I went with Medicare A and B and keep my insurance thru my retirement which has a prescription plan.

    The $8 is with my retirement plan. Nothing is supposed to change next month ref prescriptions once Medicare kicks in. Fingers crossed that is correct.

  • wren44
    wren44 Member Posts: 7,921
    edited June 2022

    My copay for Ibrance would have been $2700 per month. Xeloda is $20. I'm with Kaiser Permanente Medicare Plan. I may need the more expensive one eventually but I felt it was worth giving Xeloda a try first.

  • kbl
    kbl Member Posts: 2,919
    edited June 2022

    DodgersGirl, that’s great I hope they don’t screw it up

    Wrenn44, when I was on Ibrance, my husband had private insurance. Thankfully, I paid nothing. I will have to think long and hard before I go on an expensive med again. it’s so ridiculous that people have to pay such astronomical amounts to try to stay alive.

  • nkb
    nkb Member Posts: 1,561
    edited June 2022

    I started on 14/7 and 2500/day- had to do a dose reduction for HFS to 2000 per day- that helped feet, but after a few months, my ANC could not recover on 14/7 and my MO suggested 14/14- that worked, but, made me so nervous to drive my ANC so low that it took 14 days to recover. I convinced her to let me try 7/7- she was very reluctant but, oked it- it has been over one year now and not one single time has my ANC bottomed out due to Xeloda. I am not sure if she has any other patients on this regimen- in my chart it says 7/7 schedule due to toxicity.

    I am glad you have a few studies in your pocket if you end up wanting to switch to 7/7.