All about Xeloda

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  • intolight
    intolight Member Posts: 2,369
    edited August 2021

    Great news Mis!!!

  • lizo1
    lizo1 Member Posts: 94
    edited August 2021

    Great news Mls!!!

    I love good reports!

    Grant

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    FYI....I saw my ENT doctor yesterday for some throat problems and also talked about my GERD, which Xeloda has made worse. I have been using Gaviscon, but it doesn't work well. My Dr. suggested Prilosec and asked me to check with my onc about it. But my specialty pharmacist and chemo center pharmacist both said that Prilosec will lessen the efficacy of Xeloda. I am allowed to take OTC Pepcid. But it has to be taken 2 hours away from Xeloda. I know to always check with my pharmacist about everything that I take.

  • jron
    jron Member Posts: 8
    edited September 2021

    Has anyone had experience using xeloda as metronomic chemo?

    Thanks

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    JRon....I am on it for Stage 4, but metronomic might be a good idea.

  • vbishop
    vbishop Member Posts: 332
    edited September 2021

    I recently started Xelado; 14/7 2000 in the AM; 2000 12 hours later. We dropped that down to 1500 in the AM and 1500 in the PM. I am the self proclaimed chemo queen, experiencing little or no side effects for the past two years and 6 different treatments. Then comes Xelado! My biggest concern is dizziness. My doctors are not convinced that it is caused by the chemo as only 6% of patients experience dizziness. Yet, here I am, three days into my off week and no dizziness. Anyone else experiencing extreme dizziness?

    I talk about it in my blog https://vjbishop.blogspot.com.


  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    Xeloda lowers my BP so I had to cut back on my BP meds. I have a wrist monitor and it didn't take long to figure that out. My BP is typically high, but had dropped down to dangerous levels.

    Also, a lot of ladies have bad HFS eating foods high in Folic Acid. It is definitely my problem, so check into that.

  • vbishop
    vbishop Member Posts: 332
    edited September 2021

    Thanks for responding. My labs, including blood pressure, have been stellar. The doctor checked my bp sitting, standing, laying down to see if we have any dramatic differences. We didn't. It may still be something to look into. I will ask on Friday. Dizziness .... and the occasional vomiting that can cause .... are my only side effects. I heard about the HFS and I continuously lotion my hands and feet. I put socks on immediately after lathering up. A nice hot bath is one of my happy places that I've been told to avoid. I still take them, almost daily, but I keep my hands and feet out of the hot water; then lotion up! I was told to get cotton gloves for my hands. I'm not having any issues there, but it wouldn't hurt to be on the lookout for cotton gloves, just in case.

    Again, it is uncommon for me to experience any side effects .... to date, anyway. We'll see. The doctor wants to order an Echo Cardiogram, and chest and neck CT (cuz my many lymph nodes involved also involve other structures ... its pretty ugly; they are thinking maybe one or more of my lymph nodes is pressing against a structure causing the issue ... like my jugular).

    Another friend with a different cancer experience extreme dizziness that was caused, in part, because of very low Vitamin B-12. Will bring that up as well. At least my docs are being thorough!

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    vbishop....my BP at my chemo center is usually high. But at home, about a half hour after I take the Xeloda, I can feel the dizziness coming on. At its worst, I have grainy vision. When I took my BP, it was 78/60 or something.

    An hour or two later, it goes back up.

    I use Aquaphor at night with silicone socks and food service gloves. Cotton socks and gloves just absorb the ointment and my hands and feet get too dry.

    I also use Udderly Smooth or Aquaphor during the day.

    Some ladies vomit when they eat a meal with high folic acid. Also, are you taking the pills a half hour after a meal or snack? They work best on partially digested food that also coats your stomach.


  • vbishop
    vbishop Member Posts: 332
    edited September 2021

    Denny - yes, I take them about no more than 30 minutes after eating something. I typically don't eat a lot of foods high in folic acid. I've only gotten "sick" 4 days out of 14, so all in all, not bad. I know people that have it sooooo much worse than me so I hate to complain. Still on my off week, still no dizziness today! Waiting to hear back if the doc still has orders on the CT and echo.

    I am enjoying my "off week" while I can. So much energy! So happy! Stealing myself for starting again this weekend.

    Thanks for the suggestions! I really hope this chemo works and I can stay on it more than a couple of months. I "feel" it's working, but what do I know. We'll see next week:)

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    vbishop...good for you! Usually our off weeks are worse. Hang in there! I have been on X for over 3 1/2 years so far. But now have two possible liver mets, so we will see.....

  • vbishop
    vbishop Member Posts: 332
    edited September 2021

    yikes! I started with 3 liver mets, numerous bone mets, and too many lymph node mets to count. I hope I have 3+ years on this medication. So far, my chemo either doesn't work at all ... ibrance and gemzar... or only works for 2 to 3 months. I would love to stay on one drug for a while.

    Good luck with the liver.

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    vbishop...thanks! In 2004 my liver was so filled with mets that I only had a year to live. But after a liver resection, Gemzar and Herceptin cleared out my liver in only 9 months.

    So I am hopeful....

  • intolight
    intolight Member Posts: 2,369
    edited September 2021

    Hi All. Just met with my onc and I am saying "Goodbye" to Xeloda (and to this thread). I'm going to try AA and see if it works for me. I did well on Ibrance and anti-hormone treatment so this might work--that's the reasoning anyways. It puts off IV chemo for me which makes me happy. I was told you either tolerate it well or don't. I will peek back in a bit as you all hold a dear place in my heart.

  • vbishop
    vbishop Member Posts: 332
    edited September 2021

    Wow!I had a friend with liver mets and resection was never an option provided to her. I wonder why? For me, I would understand cuz the lymph node involvement is extensive

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    Into...good luck and what is AA?

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    vbishop-my biggest tumor was 9cm in sections 7 & 8. I had it done at a renowned liver transplant center in Pittsburgh, PA.

    It sure worked for me!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited September 2021

    Vbishop, Xeloda did a good job on my liver mets so hopefully it will be the ticket for you as well.

    Intothelight, sorry to hear about your progression. I hope AA is kind to you (Denny, it’s a combo of Aromasin and Afinitor). I’m holding it my possible list of next up although my MO feels I am now endocrine resistant. The side effects are daunting but, as your oncologist noted, some tolerate it quite well. Let’s count you among them!

  • intolight
    intolight Member Posts: 2,369
    edited September 2021

    Denny, AA is an oral drug combination: Afinitor & Aromasin. Afinitor (generic Everolimusis) is a targeted therapy that disrupts cell growth. Aromasin is an estrogen blocker, similar to Femara, but works a little differently. Since I did well on Ibrance/Femara it is worth a try. My cancer grows slowly so if this combo works, great. If not, hopefully we have not lost too much time but my next step is IV Chemo and I am trying to put that off as long as I can. We will scan in two months to see if it is working. My liver mets are in both lobes, four vertebrae, and multiple nodes.


  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2021

    vbishop-

    I was on Ibrance/Faslodex for 22 months with Xgeva until the I/F combo failed. I moved to Xeloda and have been essentially stable since November of 2018 (32 months). Extensive bone mets throughout skeleton with an occasional lyric spot (hips and spine) and one worrisome periclavicular node (SBRT zapped that). Xeloda is one of those old drugs that can be effective with many cancers. The very best of luck to you…and to us all

  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2021

    I don't know whether this Practice Update link will work or not. Thought I'd give it a try:

    TACE vs TARE vs infusion chemo with certain liver mets




  • BevJen
    BevJen Member Posts: 2,341
    edited September 2021

    IntoLight,

    All prayers and best wishes for success with AA. Hoping that this treatment works well for you with minimal side effects.

  • vbishop
    vbishop Member Posts: 332
    edited September 2021

    Thank you so much! I am very hopeful! I have noticed many women are on this drug for years. I hope I can count myself among those of you that have found success with Xelado. I have a PET on Tuesday. I wonder if We will see much after just one cycle. I suspect so. There are 2 tumors I can feel and I feel a definite decrease. Fingers crossed!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited September 2021

    That would be amazing but I am hopeful for you. We can’t be fooled by the fact that it’s oral chemo. When Madame X works it packs a wallop!

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    I had my Herceptin IV today and my nurse asked the pharmacist about my getting the Pfizer booster. The pharmacist said that I should certainly get it, although my second shot was only 4 months ago.

    So I called the hospital where I got my shots and have an appt for this Thursday!!! Since I have bilateral lymphedema I have to get the shot in my butt and no other place will do that. Gee-is my butt that ugly??? LOL.

  • intolight
    intolight Member Posts: 2,369
    edited September 2021

    Denny, funny post! I got my booster on Wednesday and was only six months after my second shot. I had a fever and felt bad for a couple of days, but I am fine today although a little weak. Onward!

  • nkb
    nkb Member Posts: 1,561
    edited September 2021

    I got scanned and jabbed today. the Moderna booster- was well organized - glad I got it before the crush of the non - immunocompromised getting their boosters, which could be as early as one to two weeks- declined flu shot simultaneously- will get that next month.

    TMs have been coming down again a little since my zapping of the right hip which was SUV of 5.5, that area is clear, but this time there were a few new areas (not sure anything is totally new, but, active again,) sacrum and L femur- they are 4.7 and 3.0. I was a little disappointed - but, hoping I don't have to change meds and can just zap them also or watch them.

    how many spots do they chase with zaps?

    will cross post on bone mets thread

  • kbl
    kbl Member Posts: 2,972
    edited September 2021

    Hi, everyone! This is my first time posting in this group. I haven’t read anything here, for the most part, yet because I’m just going to be starting Xeloda.

    I was on Ibrance for two years and two months. There is nothing definitive saying I’ve progressed, but I’m feeling awful and not able to eat again, just like when I was first diagnosed. The mets are in all bone, bone marrow, and stomach. I have lobular, and it’s never been able to be seen on CTs, bone scans, and PET scans. Now I’ve got gastric wall thickening that is showing up on CT scan, and they’re not thinking anything of it. My gastro thinks it might be progression.

    I hope I’m not making the wrong decision, but I feel like it’s progressing without showing it is.

    My story is so long and complicated, and I just don’t trust the medical community.

  • denny123
    denny123 Member Posts: 1,543
    edited September 2021

    KBL...Welcome and I hope that Xeloda will help you! We are here for you!

  • kbl
    kbl Member Posts: 2,972
    edited September 2021

    Thank you, Denny123. I appreciate it.