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All about Xeloda

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Comments

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited July 2022
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    Wren— I just finished my first “week off”. My SE of nausea and diarrhea followed me through my entire week off; but each SE did lessen Day by Day.

    Now back on Cycle 2. Yesterday, Day 5 of Cycle 2, nausea was so strong I had no desire to eat. I ended taking a Zofran and felt so much better the rest of the day.

  • divinemrsm
    divinemrsm Member Posts: 6,166
    edited July 2022
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    I notice on my week off Xeloda, the first few days I feel nauseated and don’t sleep as well. Then it evens out.

    I deal with moderate fatigue, and I’ve been doing a pretty good job of pacing myself, listening to my body and adjusting my activities as needed. I’m still active, but if I go to water pilates one day, I take it easy the next. Same with line dancing. I cannot be on the go every day. My grandkids ages 13 and 11 spent a week with us this month so I was a bit more on the go. Even so, I had down time scheduled into the week so I could keep up with them. In the middle of the week, dh took them fishing for the day and it was a much appreciated opportunity to recharge for the rest of the week.

    I had scans at the beginning of June which the reports said were unchanged from the February scans. Onc was very pleased. Because the previous four summers have been interrupted by the pandemic, treatment and two foot surgeries, I was deeply grateful for the good scans because I’ve finally been able to enjoy a normal summer: my backyard flowers, dh’s vegetable garden, going to the pool, line dance class, watching Stranger Things on my new smart tv, etc. I won’t scan again till October.


  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited July 2022
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    Divinemrsm—- Congrats on Scan results!!!


  • pnw
    pnw Member Posts: 36
    edited July 2022
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    I have finished my third round of Xeloda, I'm in my week off and have an oncologist appointment Wednesday.

    I don't even know how I'm going to make it. I am 100% exhausted 100% of the time. I don't know how I'm going to get 4 blocks uphill to the bus stop, I don't know how I'm going to walk to the Dr. office, and I don't know how I'm going make it back home again (hubby is out of town, I'm alone). I don't have the energy and I don't know how to fix it.

    I'm thinking of telling the doc I can't take this med anymore, I'm just completely dysfunctional.

    I feel like a mushy invertebrate. I don't know how to live this way and I'm feeling like the cancer plus the med are literally killing me in real time.

    Halp.

  • rk2020
    rk2020 Member Posts: 697
    edited July 2022
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    pnw - You need to tell your MO. This is no way to live. I’ll be praying that a dose reduction helps. I’m 5’3” 118 lbs. I started with 3000 mg and am now on 2500 mg. Now that my tumor markers and scans show improvement, my MO is ok with going down to 2000 mg although I will probably stay at 2500 mg. That’s my comfort zone. Good luck. I hope you find relief.

  • divinemrsm
    divinemrsm Member Posts: 6,166
    edited July 2022
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    pnw, I don't know where you live, but are there any kinds of services you could use to help get you to the oncologist? Not sure how old you are but in my area, there is a senior center that provides rides to doctor appointments for free. Sometimes a local church or organization will have volunteers who give rides to appts. And many Medicare plans will pay for a person's trip to the doctor. If it were me, I would look in to seeing if any of these kinds of resources are available where you live.

    I also agree with rk, that you may need a dose reduction. I had one at nine months and the lower dose was just as effective. It may go a long way to giving you better quality of life. Definitely discuss this with your doctor. I am hoping for the best for you. Hang in there.


  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited July 2022
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    pnw— like divinemrsm wrote, I don’t know where you live either but want to mention that the American Cancer Society offers free rides to cancer treatments.

    I hope you find a method to get to your MO so the MO can hear your difficulties and be willing to try an adjustment.

    Please keep us posted. We are “pulling” for you!!

  • pnw
    pnw Member Posts: 36
    edited July 2022
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    Thanks all.

    But I live in Seattle which is a completely broke down city. Government and many services have been on covid hiatus now for more than 2 1/2 years, very little in the way of officialdom or public services is operational. I also live on the other side of a major bridge which was emergency closed on a Monday afternoon two years ago and remains still closed making transportation a nightmare. Even taxis will refuse to come here, they just won't show up.

    But to the Xeloda, my dose has been 1000 mgs which I know is comparatively low but it is wiping me out. At the time we decided on the Xeloda treatment, fulvestrant injections were considered the main alternative and neither one of us wanted to go there. Maybe I just can't take Xeloda, I don't know.

  • dancingdiva
    dancingdiva Member Posts: 317
    edited July 2022
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    pnw, I feel the same way. I’m on my 5 or 6 cycle, I don’t remember. I’m tired and want to sleep all the time but it’s not even sleep but this drugged out tiredness. I just came back from vacation and realized I can’t do these vacations anymore. I also have water in my lungs so that’s not helping. My hands and feet are burning and peeling like mad. I hope ur doc can give you some advice and suggestions

    D

  • dancingdiva
    dancingdiva Member Posts: 317
    edited July 2022
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    pnw, why didn’t either you or doc wanna go the fulvestrant route?

    Your locations restrictions...I know this sounds drastic but have u considered moving closer to H.

    I’m on 1500 which is low compared to what I’m reading. But I’m still wiped. So don’t feel bad. My doc had to reduce to 1000 for the daytime dosage while I was on vacation because I wouldn’t be able to do anything. It did help.

    DD

  • aprilgirl1
    aprilgirl1 Member Posts: 781
    edited July 2022
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    PNW, I'm sorry it's been so hard . It sounds like you live in West Seattle. West Seattle does have a senior center that will arrange rides for residents in need at n/c (donations welcome per the website). You need some advance notice to arrange. Send me a PM if you'd like more info . I wish I lived closer and didn't have a full day of work this Wednesday. ( I live in Kitsap County). I also think you should call your oncologists office and let them know how weak you feel and that you are alone and need help with transportation. Here is a link to the West Seattle Senior Services organization - 60 years of age and up is the age requirement for the transportation assistance.

    https://sc-ws.org/services/transportation/

    Please let us know how you are doing!


  • pnw
    pnw Member Posts: 36
    edited July 2022
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    Thx aprilgirl1

    So I made the great bus journey to see the Doc today and got through it. We decided to switch the Xeloda to one week on, one week off. I hope this helps.

    There is also an imminent clinical trial that I'll probably sign up for soon, Doc is excited about it. Have to wait to see what their contract says.

    I'm being treated at the Seattle Cancer Care Alliance (SCCA) and they have been more than amazing.

    March 1, 2020 I found myself in the emergency room of Harborview hospital, where I was checked in, kept for a few days, whirled and twirled and examined, with a diagnosis of MBC. I was beyond flabbergasted.

    Since then I have been in the care of the oncologist who plucked me from the ER and saved my life. She is integrated into the UW medical/Fred Hutch cancer center/SCCA/Harborview hospital. This is a sprawling medical behemoth that can do anything, I recommend it most highly.

    I love my Doc. she's a hero.

  • aprilgirl1
    aprilgirl1 Member Posts: 781
    edited July 2022
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    PNW, I am relieved that you made it to your appt and that your oncologist is switching your Xeloda schedule. Hopefully that helps! I also have my care at SCCA. I go to the big Cancer Center in Seattle (South Lake Union) but I can get blood work and my current monthly fulvestrant at a SCCA clinic in Kitsap which is much easier for me. I love my MO as well. Sending you a wave and good energy from across the Sound:)

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited July 2022
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    pnw—- so glad to hear you have a new plan for Xeloda Cycles. Hope it improves your situation and kicks cancer’s butt.

    Thanks for letting us know.

  • dancingdiva
    dancingdiva Member Posts: 317
    edited July 2022
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    pnw, I’m so Glad things worked out. It sounds like u r at an amazing place.

    Well I’m getting another lung tap done tomorrow but they can’t put me under like last time because that dept is overwhelmed with emergencies and people being sick and covid so they have to do the normal way. I’m taking 2 ativans this time and a gravol and hopefully I won’t throw up all over the place like last time!! Lol. My friend is bringing me because my husband got upset that my aft appt tomorrow would interrupt his shabbat. Yeah that’s my husband-shabbat is more important than my procedure. So, glad my friend is bringing me. Always need friends.
    so yeah this lung water is not stopping and I think I have ascites as well starting. Not sure how xeloda is working. It killed some stuff but ..Wish me luck. I will need it

  • rk2020
    rk2020 Member Posts: 697
    edited July 2022
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    Dancing - You will be in my thoughts tomorrow. I’m so glad you have a support system to accompany you. Post an update. Good luck. 🍀

    pnw - Fingers crossed that 7/7 is kinder to you. Keep us updated on your potential trial drug.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited July 2022
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    dancingdiva— thinking of you for tomorrow’s procedure.

  • denny123
    denny123 Member Posts: 1,487
    edited July 2022
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    pnw-with Xeloda, avoid foods high in folic acid and folate. I suffered bad HFS for 3 years before I figured that out.

    Dancingdiva-I hope that all went well wtih your procedure.

  • concerned_daughter11
    concerned_daughter11 Member Posts: 25
    edited August 2022
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    Hi everyone, I hope you don't mind me posting here (I am a caretaker for my mom with MBC). She's been on xeloda since March with great results (weight gain, decreased pleural effusion and stable scans (as of June). This month her tumor markers rose by about 8 percent. I guess my question is have any of you experienced transient TM rises? Her TMs have been pretty on point in the past, but absent any symptoms I'm hoping this is a one off.

  • kbl
    kbl Member Posts: 2,776
    edited August 2022
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    Hi, concerned. I have had ups and downs with my tumor markers. Mine are accurate with my situation. What I've come to realize is I would probably have to have a steady rise for three or four months before I thought something was progressing. My tumor markers went down quite a bit on Xeloda. After dropping to 105, they rose back up to 136 but then back down to 116. That is from a high at the beginning when I found out I had cancer of 490. I would say keep an eye for a few months first. Hopefully, they will pop back down. I hope this helps.

  • denny123
    denny123 Member Posts: 1,487
    edited August 2022
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    Hi Concerned and welcome!

    I am 20.5 years at Stage 4. My markers have never been accurate. But a lot of times, they can rise from a minor infection, like a cold.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2022
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    had blood work today before starting Cycle 3.

    I know which pieces of labs the MO viewed to check on my status while on Verzenio but I don’t yet know this for Xeloda.

    My hemoglobin is way higher since changing treatments. Also, platelets are much better

    Any thoughts what MO is looking at?

  • wren44
    wren44 Member Posts: 7,893
    edited August 2022
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    No idea. I just started after a 2 week break at a lower dose and it's much better

  • rk2020
    rk2020 Member Posts: 697
    edited August 2022
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    Dodgersgirl - As far as I know, they monitor kidney and liver function as well as platelets and blood cell counts.

  • rk2020
    rk2020 Member Posts: 697
    edited August 2022
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    Dodgersgirl - Also for reference, my bloodwork experience on Ibrance or Verzenio vs Xeloda: RBC is no lower, WBC is substantially higher, my platelets seems to be unaffected and my AST and ALT slightly above normal range but not a cause for concern. One time my creatinine/bun ratio was slightly high but MO was not concerned and it went back to normal on my next test. Drink drink drink.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2022
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    Wren44- thanks for the reply. Hope lowering your dose continues to assist with QOL

    RK2020- my bloodwork from yesterday shows WBC up, Hemoglobin jumped a lot, Platelets also increased by over 100 points.

    RBC count is still low like it was on Verzenio. Liver and kidney numbers look ok.

    Hence, I received the go-ahead for Cycle 3

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2022
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    Dodgers, there is variation between patients of course but one of the things they watch me for, in addition to liver and kidney function, is the impact on my bone marrow. In my case, Xeloda is toxic to my marrow and, as a result, my RBC numbers get increasingly wonky. Not only is my RBCs and Hb low, but also the size of the cells, the volume, etc. get out of whack. Last year, after six cycles, my MO recommended I go off treatment. I couldn’t understand why until he mentioned my marrow. Then the penny dropped…. Oh… so the Xeloda can do more harm than good if I push it.

    I’m just starting round six of Xeloda after failures with two other chemo regimens. I’m interested to know what my MO recommends this time given that “no treatment” lasted less than two months before it was clear that my liver lesions were back. Is it better to stop, allow my marrow to recover and hope Xeloda beats it back? Or do we push the boundaries with a low dose? It will be an interesting conversation

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited August 2022
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    Sadiesservant— thank you.

    I see my MO is testing, “Manual Differential” which includes:

    RBC Morphology

    Macrocyt

    Polychro

    Dimorphic Red Cell Pop

  • denny123
    denny123 Member Posts: 1,487
    edited August 2022
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    I had a CT scan last Wed and have an appt this Wed for the results. But today I received a letter from my CT scan place that I have a significant abnormality. So I called my chemo center to ask them to read the report to me.

    Good news...bad news. The cancer spot in my liver is stable, but I have a new spot in my lung, AND I have a L1 spinal compression fracture. I have had a lot of lower left back pain for over a week.
    The only thing that could have done it, was when I lifted small buckets of water to water my plants. I do have osteoporosis and have gotten bisphosphonates for 23 years.
    Fun times.


  • divinemrsm
    divinemrsm Member Posts: 6,166
    edited August 2022
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    Denny, sorry to learn of the latest developments. Please let us know how your appointment goes on Wednesday.


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