All about Xeloda

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  • intolight
    intolight Member Posts: 2,335
    edited May 2021

    txmom, wanting to join with the others welcoming you. Don't hesitate to ask questions.

  • moth
    moth Member Posts: 3,293
    edited May 2021

    Hello, I've been lurking here for months as my MO said this was one of my options for the next line & it looks like I'm getting closer to that switch...

    I have mets to bone, lung & liver & am a mix of TN and faintly ER+ (3/8 on one recent lung biopsy).

    Trying to decide whether to go with xeloda or gemcitabine + cisplatin. If anyone has strong opinions & wants to talk me one way or another, feel free!

    hey - I did find an inspiring story about a geriatric pt with brain mets who was treated with low dose 1500mg/day, no breaks xeloda & was doing well on it for>5 yrs at time of the case report & her QOL actually improved while on the treatment https://ar.iiarjournals.org/content/34/8/4287


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited May 2021

    I have not been on G+C, but my QOL was great on Xeloda. It is my favorite. Getting the dose right is key in my opinion. Another consideration might be how much each treatment is expected to cross the blood brain barrier.

  • denny123
    denny123 Member Posts: 1,528
    edited May 2021

    Welcome moth! I was on Gemzar 18 years ago for numerous large liver mets, along with Herceptin (for a total of 9 months), & it did a great job.

    My SE were low platelets and thinning hair.

    I have not had Cisplatin.

    I was on Xeloda at 2,000 and 7/7 but now on a break for a few months because of severe toe infections (most likely caused by eating too many large salads (!!!!!!) that are high in Folic Acid.

    I have been NED on Xeloda and Herceptin for over 3 years, as a maintenance, after Poziotinib cleared out my chest node recurrence.

  • illimae
    illimae Member Posts: 5,701
    edited May 2021

    Moth, I had bad diarrhea and vomiting when I first started Xeloda (with Tukysa) but Imodium and promethazine solved it along with a dose reduction from 4,000 to 3,000 daily 14 days on, 7 off. However, I had to take a month off due to heart function issue from a Herceptin biosimilar but after I restarted none of the SE’s returned and I haven’t had any further issues.

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

    txmom, you'll be fine! Break a leg.....:)

  • sbaaronson
    sbaaronson Member Posts: 121
    edited May 2021

    Txmom and Dutchiris,

    Just this evenings dose short of finishing my first 7 day cycle, 3000mg/day. I am on 7/7 program. Hopeful it works and is tolerable for all here!

    Stace

  • WANDERING
    WANDERING Member Posts: 197
    edited May 2021

    Hi all. Met with the oncologist yesterday. He put me back on Xeloda - same dosage 3000 mg per day but 7 on and 7 off. Hope that works. The same dosage but 14 on and 7 off caused such severe diahrrea that I ended in the hospital for 12 days. I was assigned a new PCP and met with her yesterday. I feel good about her - now I have a contact person for anything other than the cancer. The cancer clinic seems to still be in a bit of disarray. (They fired their only oncologist who had been there 25 years). Now they have locums and one permanent doctor. The doctor they fired was scheduled to have a trial start this week but that has been delayed. I think the hospital where he was fired from has sued him in hopes he will lose his license. A competitive hospital is building a huge facility and I think if he does not lose his license he will go to work for them. His former patients hold rallies on the street and sidewalk outside the hospital every day. The doctor they hired permanently graduated from Baylor College of Medicine in Houston. I have personal knowledge about that school and it has an excellent reputation. I might be able to get assigned to him at some point. We'll see how the new schedule with Xeloda goes. It took me two full cycles to get sick and in the hospital last time. Sure hope this works - would like to have some "play" time this summer.

  • divinemrsm
    divinemrsm Member Posts: 6,585
    edited May 2021

    Gosh, Wandering, what is the oncologist on trial for?


  • intolight
    intolight Member Posts: 2,335
    edited May 2021

    Wandering, wow! What a lot to have to deal with. I will pray this time Madame X is kinder to you.

  • WANDERING
    WANDERING Member Posts: 197
    edited May 2021

    The hospital has refused to disclose why they fired the oncologist. They said it was a "personnel" matter. The only thing I have read is that he overprescribed pain meds and also had a lung cancer patient who was treated for 11 years and died. They claimed that when died he did not have lung cancer. (Was he cured?). I think that is why people are so upset is the hospital has not disclosed why he was fired. They also tried unsuccessfully to fire him several years ago. I think he was making too much money. How can you overpay a guy who works 24/7 and sees 1500 patients a month. They have 3 oncologists working in the clinic to take his place. Does that tell you anything about his workload?

  • moth
    moth Member Posts: 3,293
    edited May 2021

    wow Wandering 😯

    Season 2 of the podcast Dr Death dealt with medical oncology fraud and an oncologist who was misdiagnosing and overtreating pts. Very scary

  • WANDERING
    WANDERING Member Posts: 197
    edited May 2021

    PS: I also hope the next round of Xeloda is kinder to me. It is a relief to only go in every 2 to 3 weeks. When I was on taxotere I went in every week for an infusion. We are 100 miles round trip from town plus it was during the winter and there is no telling what the weather will be. Today it is snowing like crazy. Glad we went to town yesterday instead of today. Enjoying the peaceful snowfall. PS: Anyone lose their hair? How long did it take for it to grow back?

  • divinemrsm
    divinemrsm Member Posts: 6,585
    edited May 2021

    Wandering, wow, what a mystery about the oncologist. You’d think the reason for the trial would be public news.

    Xeloda has not affected my hair at all. Ten years ago when I had iv chemo, I lost all my hair but eventually it grew back. Then two years ago I went on Ibrance and then Verzenio for about a year, and my hair barely grew and also thinned a bit.

    But on Xeloda it’s back to normal. Here is a funny/surprising/interesting (take your pick) thing: I have not had my hair cut professionally in two years and have been cutting it myself. And I think it looks better than it has in years! I had been getting it cut kind of short so I let the layers grow out. Now I keep it cut about chin length and color it myself too. It’s sooo much easier to take care of and without all the choppy layers, it’s fuller.


  • intolight
    intolight Member Posts: 2,335
    edited May 2021

    Wandering and Divine, my hair has grown in thicker on Xeloda than the four years on Ibrance. I cut and color it myself also. I was a licensed cosmotologist 50 years ago and haven't worked in the business for over 40 years, and I know I don't do a great job on myself. Still, it looks good--I get compliments. My funny story--I have to shave my legs now, something I haven't had to do for four years!

  • denny123
    denny123 Member Posts: 1,528
    edited May 2021

    Wow Wondering! I sure hope that your new doctor is better. How scary to have that one fired!

    My hair is thinner, but I think that it is caused by the Salmon Calcitonin nasal spray that I am now on in addition to Prolia.

    LOL that I only have about 5 hairs per leg. But I am 72.

    I got my second Prizer butt shot today, but distressed that with chemo we only have a 17% chance of it working for us.

    Xeloda is one of the antimetabolites, as is Gemzar.

  • dutchiris
    dutchiris Member Posts: 783
    edited May 2021

    Is it still less effective for people who had the vaccine prior to antimetabolites?

  • denny123
    denny123 Member Posts: 1,528
    edited May 2021

    Dutch-I don't know. I have been reading about this for months and finally MSNBC has been reporting on it. I am on an X break and am going to wait for 2 weeks before starting back on it.


  • divinemrsm
    divinemrsm Member Posts: 6,585
    edited May 2021
    • JIntolight, if you are getting compliments on your hair, you are doing a great job cutting it!

    I had too many pricey salon cuts where I came home and made revisions with my own scissors. I concluded I know my hair better than a hair stylist. I need a cut that will still look nice during summer's humidity which flattens my hair.

    Here's a before when I was on Ibrance. The other photos I took yesterday.



    image


    image



    imageimage

  • intolight
    intolight Member Posts: 2,335
    edited May 2021

    Nice job Divine. I will take a picture later today (I just got up) and post Ibrance vs Xeloda pictures too. You had more hair on Ibrance than I did, but I was on it four years.

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

    Devine- you are talented with the scissors! Mine was thickest on Afinitor- no hair fell out- so thin on Ibrance


    the vaccine efficacy in various situations really is unknown at this time. There are antibodies and also T cell and B cell immunity. My MO said that Xeloda wasn’t as hard on the immunity as many other drugs. There was an article yesterday re a heart transplant MD who had a heart transplant himself and he got 2 doses of mRNA vaccine with little response and added a 3rd with the J&J and has a good response now- he has tested the T and B cell response as well. He said it could be 3 doses is the charm or the crossover in types or other reasons- we need more information before it is known. There will be guidance on this when more is knownas it is a “hot topic”.

  • denny123
    denny123 Member Posts: 1,528
    edited May 2021

    Divine...You look DIVINE!

  • denny123
    denny123 Member Posts: 1,528
    edited May 2021

    Nkb-thanks! That sounds hopeful!

    I am feeling okay today after my second Pfizer shot....just a slight headache. Works for me!

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

    Looking good Divine! It's funny how the drugs effect us. I had serious thinning on Verzenio so suspect all the CDK inhibitors impact the hair.

    Interesting on the idea of a third dose. I actually wondered about that as here, they are delaying the second dose far beyond the manufacturer's recommendation in order to get a first dose into more people and despite early information indicating that it puts cancer patients at risk. Sigh... I'm now six weeks out from my first dose and while I also understand that Xeloda is not has hard on the immune system (the articles I read were more focused on transplant recipients in terms of the impact of this class of drug and their immune systems are purposely wiped out to avoid rejection), I do believe that we are still at higher risk if we are not fully vaccinated. I'll be glad to get my second jab!

  • intolight
    intolight Member Posts: 2,335
    edited May 2021

    Divine, here are Ibrance vs today (xeloda) pictures. The old one is not too good, but shows it best...

    imageimageimage


  • denny123
    denny123 Member Posts: 1,528
    edited May 2021

    Into-you are looking great! Mine is so thin and now it is pretty long since I haven't had a cut for a year.

  • divinemrsm
    divinemrsm Member Posts: 6,585
    edited May 2021

    Intolight, your hair looks gorgeous! You have beautiful eyes, too!

    We are saving ourselves a pretty penny cutting our own hair! I spend some of the savings on hair products, lol.

    .

  • intolight
    intolight Member Posts: 2,335
    edited May 2021

    My onc just called me and I am going back on Xeloda instead of switching. My scans aren't clear enough to determine what is actually going on or what the small spots actually mean--yeah, after three different types of scans. They can't get a biopsy either. So we will scan again in three months to see if there is significant growth. I will see my onc in person in a few weeks to check in. This is a weird place to be, but could be worse. She said "no" to increasing my dosage up a notch. Did I stress for nothing? I am tired of worrying about it.

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

    into- I am glad that you can stay on Xeloda. For what it is worth my MO said a dosage increase rarely makes a difference. I worried endlessly including practically writing my own obituary with the Last scan. Truly stressful way of living. I hope you can relax and enjoy your next 3 months!

  • denny123
    denny123 Member Posts: 1,528
    edited May 2021

    Into...it is hard not to worry. The scan before my last one showed spots on my left ribs "Highly suspicious of Metasis". Turned out to be nothing but scaring from a previous broken rib.

    Good luck!