All about Xeloda

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  • denny123
    denny123 Member Posts: 1,531
    edited January 2019

    Joyner-Thanks!

    I agree with Goldie that swimming can really be a problem with the chlorine.  

    I also quit soaking my feet in Epsom salt since my podiatrist said that it was too drying.  She cut down my big toe nails and said to use Betadine when they are sore.  And they do seem to be better attached as they grow in.  

    Will see my onc in two days unless we get the predicted snow (I am in PA), to see if I could possibly be NED for a whole year.  

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2019

    Denny, hoping you can get that NED again. How do you feel overall? I'm waiting on scan results.

  • Frisky
    Frisky Member Posts: 1,686
    edited January 2019


    Check this out...you unbelievers.....

    A cure for cancer? Israeli scientists say they think they found one

    https://www.jpost.com/HEALTH-SCIENCE/A-cure-for-cancer-Israeli-scientists-say-they-think-they-found-one-578939

    A small team of Israeli scientists think they might have found the first complete cure for cancer.

    We believe we will offer in a year's time a complete cure for cancer." said Dan Aridor, chairman of the board of a new treatment being developed by Accelerated Evolution Biotechnologies Ltd. (AEBi), which was founded in 2000 in the ITEK incubator in the Weizmann Science Park. AEBi developed the SoAP platform, which provides functional leads to very difficult targets.

    "Our cancer cure will be effective from day one, will last a duration of a few weeks and will have no or minimal side-effects at a much lower cost than most other treatments on the market," Aridor said. "Our solution will be both generic and personal."


  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited January 2019

    Well, bring on the MuTaTo! I want it...now! I'll volunteer to be in their trial. Thanks, Miaomix!

    P.S. I was reading the article aloud to DH and had a hard time reading MuTaTo with a straight face.

    🎶 You say Moo-Tah-Toe and I say Moo-Tay-Toe....🎵, but don't care HOW to say it if it works! Wouldn't it be the most wonderful thing ever???

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2019

    That's funny Muddling!

  • Frisky
    Frisky Member Posts: 1,686
    edited January 2019

    more important news to consider in order to survive this dreadful disease and the side effects from the treatments.

    In a nutshell cancer and cancer treatments cause inflammation which leads to heart disease....so take your favorite antiimflammatories and all precautions to prevent a stroke.


    Breast cancer patients at increased risk of atrial fibrillation

    https://www.news-medical.net/news/20190129/Breast-cancer-patients-at-increased-risk-of-atrial-fibrillation.aspx

    In a retrospective analysis of nationwide registries in Denmark, the researchers found that women with breast cancer were at an increased risk of developing AF within three years following their diagnosis, compared with female counterparts of the same age in the general population.

    D'Souza says that modern treatment regimens ensure that about 80% of breast cancer patients become long-term survivors. However, long-term complications arising from both the cancer and associated treatments can threaten survival.

    In particular, an increased incidence of heart disease, especially ischemic heart disease and heart failure have been observed in this patient group.

    The team therefore hypothesized that women with breast cancer may be more susceptible to developing AF as a result of inflammation.

    After identifying breast cancer patients diagnosed between 1998 and 2015 and matching 74,155 female patients with 222,465 age- and sex-matched controls form the general population, the researchers used cumulative incidence curves and multivariate Cox regression models to estimate the long-term incidence of AF.

    They found that breast cancer was associated with a greater risk of AF, in a manner that was dependent on current age and the time since diagnosis.

    Patients younger than 60 were at more than twice the risk in the first six months following their diagnosis and an 80% greater risk between six months to three years following diagnosis.

    Those older than 60 were at a similar risk to the general population during the first six months but were at a 14% greater risk during the six month- to three-year time frame.

  • denny123
    denny123 Member Posts: 1,531
    edited January 2019

    Thanks Goldie and I am still NED!  My onc. ordered a couple of prescriptions of topical steroids for my feet.  So I will post what they are when I pick them up.

    I am only on 2,000 a day, one week on and one week off.  And that is tough enough....can't imagine how you other ladies are doing on higher doses.  I am just very tired, which is typical for day 2 of my week on....besides my sore hands and feet, of course.

    Good luck on your scans!

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited January 2019

    Denny, that is just so awesome. No evidence at all! Maybe you are cured!!!!! I'm still waiting on scans. Considering taking a 2-3 week break off of X, just so my feet can heal some. I have a slit right in the middle of my foot, just in front of the heel. Feels like someone sliced it with a razor and then poured alcohol or salt on it. But to look at it, you would laugh at me. And then sometimes, it hit a nerve or something, and hurts even more, sort of stings?

  • QT314
    QT314 Member Posts: 18
    edited January 2019

    I'm hoping some of the knowledgeable people on this forum can provide some advice/information. I was diagnosed with high grade pleomorphic ILC in 2015 and developed mets affecting spine and pelvis and supraclavicular lymph nodes in 2018. Still ER+ according to the lymph node bx. HER negative.

    I was commenced on ribociclib and exemestane (the rationale for the latter presumably being that anastrazole which I had been on prior to mets is similar to lezotrole both being non-steroidals v exemestane) but saw a continuing steady rise in TMs over 6 months. Repeat CT at 3 months showed no progression but CT at 6 months showed streaking of the peritoneum with a small amount of fluid. Typical of ILC. Yuck!

    My MO has now changed me to Xeloda. I should add no symptoms either from the mets or the treatment although early days on Xeloda. My MO has indicated if this doesn't work the next step is Abraxane.

    I'm keen to understand whether there are any other viable options out there that should be considered or any other questions I should be asking in case Xeloda doesn't work.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2019

    QT314, I would not be considered a "knowledgeable person". However, I was just changed from Ibrance/Faslodex after 23 cycles as it had failed, and I had some progression in my hips (I am bone only so far). I chose to go to Memorial Sloan Kettering for a second opinion just after Christmas this year, even though I trust my onc. The onc breast cancer specialist there agreed with my onc in general and laid out options for my treatment, which included either Xeloda, or AA, or Verzenio. She suggested that I start with X and said that I could change to the others as may be needed or desired.

    My point: I'd recommend a second opinion at a primary National Cancer Institute facility so that you can gain comfort that you're doing the best thing for your own situation. There's so much information swirling now. I feel much more comfortable and confident having met with that doctor (Dr. Rachael Sanford in the Manhattan MSK).

    Good luck!

  • lizo1
    lizo1 Member Posts: 94
    edited January 2019

    GT314

    I will agree with Lynn regarding a second opinion. We have a couple of top research hospitals near us and we went for a second opinion at the other one. The onc who gave Liz a second opinion concurred with the first onc regarding treatment plan options. He also offered some additional tests that may be helpful for future decisions.

    The second opinion definitely gave us a little bit of peace of mind making these difficult life decisions....


    Grant.

  • wallaby715
    wallaby715 Member Posts: 183
    edited January 2019

    Hi Goldie: No, I did not have H&F with Ibrance. In fact, I had hardly any side effects except the runny eyes and nose, and of course, fatigue. But all in all, Ibrance was easy. I'm hoping with the reduced dose of Xeloda that my hands start getting some relief. I'm going to resume golfing in a couple of weeks after having a fractured sternum, and it's difficult to grip the club when your hands hurt! We'll see how it goes. Hope you're seeing some relief.

    Cindy

  • Frisky
    Frisky Member Posts: 1,686
    edited January 2019

    the plot thickens....hold off on popping open that bottle of champagne....

    Experts Decry Israeli Team's Claims That They Have Found The Cure For Cancer


    https://www.forbes.com/sites/robinseatonjefferson/2019/01/30/experts-decry-israeli-teams-claims-that-they-have-found-the-cure-for-cancer/

    It's funny...the crux of the matter is the use of peptides, something MO Burzinski in his clinic in Dallas has been successfully using for the last forty years to cure the most deadly cancers of the brain.

    Hummm....

  • QT314
    QT314 Member Posts: 18
    edited February 2019

    Thank you Joyner and Grant. Sage advice. Joyner you are knowledgeable by virtue of the fact that you have travelled this road none of us wish to but along which we learn so much about this terrible disease. Good luck to both of you and to your partner,Grant.

  • bigbhome
    bigbhome Member Posts: 721
    edited February 2019

    Goldie, The Footsmart creams have ended up being the best! I said I was going to try them and they are great! All cracks are almost gone and the foot balm does help with the burning from being on your feet too long! Well worth the money!

    Claudia

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2019

    Another thought on foot creams: I found a set of "socks" for wearing in bed with foot creams. They are quite odd looking, and it would appear that they would fall off, but they do NOT. They are comfortable and fit fairly loosely. Frankly, I expected them to fall off, but they didn't even come close. I highly recommend these, regardless of the other comments. I wear ladies' size 9 or 9.5 shoe.

    image


  • lizo1
    lizo1 Member Posts: 94
    edited February 2019

    Claudia,

    Where do you purchase the Footsmart creams? I've looked online but having difficulty finding any suppliers.

    Liz has been okay so far with Okeeffe's but she only started her second cycle.


    Grant.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2019

    Bigbhome, I can't find the Foot Smart creams online. The Foot Smart website appears limited to shoes and orthotics(sp?). Where do you find it, please? Thanks-

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited February 2019

    Joyner, I get their print catalog and recall seeing the lotions/creams in it. Sorry I don't have a copy right now because I recycled all catalogs around Christmas time. When I get a new one, I'll look and report back. Maybe Claudia has an item number or a catalog 😊


  • bigbhome
    bigbhome Member Posts: 721
    edited February 2019

    Joyner, I have those cotton socks also, but I found them hard to wear at night due to night sweats. I wear them during the day as needed. The foot cream was in their catalog, which I too threw away. I will look it up online and get back to you.

    Claudia

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2019

    That would be wonderful, Claudia...thanks!

  • bigbhome
    bigbhome Member Posts: 721
    edited February 2019

    I am so sorry friends, but I called Foot Smart and it seems they merged with another company and no longer carry this product. I am so bummed...

    I am going to research and see if someone else bought their formula.

    Dh said yes to the puppy! 🙌

  • ADDK
    ADDK Member Posts: 70
    edited February 2019

    Hi, I´m starting a clinical trial next week that includes 1000 mg Xeloda twice a day, two weeks on, one week off. I still work full time, so change in treatment really stresses me. I have read through this thread, but still have so many questions. How soon does the HF syndrome kick in? Will I be able to wear socks and shoes, and how much will I be able to stand on my feet/walk? Should I take the pills with food? What about nausea and diarrhea? Any information from you experienced and brave ladies is really appreciated.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2019

    ADDK, my information is probably worthless, since I just began week 2 of Zeloda yesterday. My regimen (per Sloan Kettering) is 1500 mg (3 pills) in the AM and again in PM (total 3000 per day) with 7 days on and 7 days off, so yours should be a lighter version of that. I have experienced no HF SE yet, but my onc told me that with this regimen (rather than the more standard 14 on and 7 off, as so many follow), I may well not have any HF SE. I did begin to experience some mild diarrhea around mid-week (softer stools and more frequent trips to the bathroom), and I had fatigue the last two days. My onc did note that SE are cumulative and that I should be prepared for the diarrhea with Imodium on hand. I'm expecting to have some issues this week, but we shall see. Since you are on the shorter days (7 vs 14 on the medication) as well as a lower dose (1000 per day), you may not have these SE at all. The instructions say to take after a meal, so I take right after breakfast and right after dinner, with a big glass of water. Stay hydrated.

    Good luck to you and to the trial on which you are participating! The others with far more experience than I will weigh in, I'm sure.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2019

    ADDK, I just re-read and realized that you are on the more standard 14 on and 7 off but with the lower dose of total 2000 mg/da rather than 3000 mg/da. I apologize for the oversight. I hope that your SE are still lessened. And some on the string don't seem to experience so many.

  • HLB
    HLB Member Posts: 740
    edited February 2019

    Addk, I started at 3000 per day and had sore feet after 9 days. I reduced it 2500 and never had a problem again and I was on it for about a year. However my tm went up the whole time after I reduced the dose. I was surprised that only one pill made that much difference in side effects. My tm went down drastically at first, but as soon as I reduced it was back up. Very disappointing since a lot get good results with less pills. I think you will be able to work no problem

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2019

    ADDK, I'll just chime in with my Xeloda experience in hopes that it will help allay your fears.

    I am on 2000 per day 14/7. I wear soft socks and comfortable shoes, and though my feet get red, they are fine. I DANCE on them, barefoot. Every night I rinse them and put lotion on. But spending many hours walking/working on my feet can make them burn.

    Yes, we are advised to take Xeloda with a meal. When I first started my digestion was a little touchy so I avoided challenging foods, but my body seemed to get used to the drug. I just keep things reasonable. No nausea. If I started to head toward diarrhea, I would just eat BRAT (classic anti-diarrhea diet of bananas, rice, applesuace, toast) for a day and I'd be fine.

  • ADDK
    ADDK Member Posts: 70
    edited February 2019

    JoynerL, HLB, and ShetlandPony, thank you so much for sharing your experience and advice with me! I´ll go shopping for socks, lotions and creams, and make sure that I have Imodium on hand. Though my co-workers are really empathetic and loving I would hate to have D all over my workplace lol.

  • Frisky
    Frisky Member Posts: 1,686
    edited February 2019

    Hi all....this may sounds extremely weird...and it is.....

    After being on X for seven months, I discovered as my hands and feet's started drying out, and my skin cracked and peeled away and moisturizing did very little to solve the problem....that the key for retaining soft and immaculate hands and feet was in sanding them down first....and voilà problem solved for weeks instead of minutes....

    Instantly smooth and soft restored hands and feet to which I apply cream to finish the spa treatment.

    I felt somewhat selfish keeping this bit to myself but at at the beginning I was skeptical that the benefits would last, but they do...so I hope it works for you as well!


  • JoynerL
    JoynerL Member Posts: 1,392
    edited February 2019

    Miaomix, what do you use to do the sanding?