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Xeloda for "Maintenance" purposes (not Stage IV)

serendipity09
serendipity09 Member Posts: 769

I was given Xeloda last year for "maintenance" purposes, and to say that I had a difficult time on it is an understatement. After some adjustments to the dosage, I was taken off of it after only three cycles (we tried lower doses.) I was diagnosed with a recurrence in July. It was physically present a month after having stopped my last cycle of X, we just thought it was a suture that did not dissolve. I completed rads less than a month ago, and I'm scheduled to start Madame X on Monday.

Are there others out there that used it for precautionary reasons? If so, what, if any SE's did you experience? Any long term/permanent SE's? I'm very apprehensive about going back on it, but know that I have to try again.

I do realize there is a thread for Xeloda for stage IV, and I did ask questions at one point, but was reminded that it was a stage IV group. By no means do I want to diminish anyone's diagnosis with my temporary use of it.

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Comments

  • illimae
    illimae Member Posts: 5,569
    edited November 2021

    serendipity, I haven’t heard about Xeloda use outside of the stage IV setting but I can tell that while I found the first few weeks difficult from SE’s, it’s been over a year now and I’m doing well and feel pretty normal. Nausea, vomiting and diarrhea were my issues. I took Imodium daily for about a week, then every other day. I seem to have adjusted and only rarely need it now. Nothing worked for the nausea and vomiting until i was prescribed Promethazine, an old drug but it worked great for me. Appetite was iffy but returned after a few weeks on its own. I’m strict about drinking plenty of water for hydration and use CeraVe (it’s not greasy, I hate greasy lotion) nightly on hands and feet, so far I’ve had not problems there either. There’s some mild joint issues (knee crunching), similar to what I experienced with tamoxifen but it doesn’t interfere with daily activities. I’ve found it pretty easy, if side effects are well controlled. Good luck!

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Thank you illimae, I really appreciate your response! I'm hoping that this time around my body tolerates it better, I'm a bit scared. I'm thinking that maybe my body was still dealing with the SE"s from AC&T and surgery and maybe that is what made it so intolerable. My MO will take me off at the first sign of those SE's, the worst being the bone pain, it was unbearable, my bones felt like they were broken, especially the feet, which made it difficult to walk. I did not get any of the hand/foot skin issues. Again, thanks for taking the time to post.

  • illimae
    illimae Member Posts: 5,569
    edited November 2021

    serendipity, I forgot to mention that I did have a dose reduction after the first cycle due to the vomiting. It might be worth trying that before stopping, if you’re having problems.

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    illimae - I had three dose reductions to no prevail. I started at 3500mg and went down from there. I had no appetite either and had to remind myself to eat. Had quite a bit of nausea with it, luckily no vomiting. I recall reading on the Xeloda thread that it's better to take either with food or half hour after? One of the two. My MO did not give me those instructions. Again, hoping for a different outcome this time around.

  • illimae
    illimae Member Posts: 5,569
    edited November 2021

    serendipity, instructions are to take with within a 1/2 after eating. I usually take them about 10 minutes later, any longer and I’ll probably forget. My lack of appetite resolved within a few weeks of the dose reduction.

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Thanks again illimae!

  • mamacure
    mamacure Member Posts: 256
    edited November 2021

    Serendipity- hello on here! Thanks for starting this thread! I was told not much SE!! Nausea, bone pain?? Oh dear, I am scared. Hope my onc approves lower dose (2000) to start….. please keep me posted on how you are doing this time around. Take care.

  • Sergionucci
    Sergionucci Member Posts: 1
    edited November 2021

    Hello Serendipity, as far as I know capecitabine is used as a maintenance/preventive measure after standard therapy in certain settings (for example TNBC at high risk of relapse), at least in Europe. Did you have a check for DPD deficiency?

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Hi mamacure! I started this thread cause I had no where else to ask as the Stage IV group members are taking X for years or forever. I asked last year when I was experiencing the harsh SE's and it was made clear by a member that it was a stage IV group. I really didn't/don't want to diminish anyone's diagnosis, but I had no where to turn. I feel better that there are others that are/will be taking madame X for maintenance purposes, and it's not just me.

    I'm hoping that my SE's from a year ago were due to having started less then three months after having finished my chemo infusions and only a month and half after BMX. I'll keep you posted. When I spoke to the pharmacist yesterday she went over the SE's with me and told me to take half hour after eating at least 10-12 hours apart. That's going to be the hard part for me, as I'll have to eat at 6am/6:30am to be able to take after dinner so I'm not eating right before bed. Ayayayayay

    Sergionucci - that I'm aware of, I have not been checked for DPD deficiency. I don't see it on any of my test results. I see my MO onTuesday prior to starting X and will ask about it. It makes sense that she's prescribing it since it was discovered (during BMX a month after tx) that it spread to my lymph nodes and a local recurrence not even a year after both treatment and surgery. It was actually physically present 5 months after surgery.

  • NatureYogi
    NatureYogi Member Posts: 135
    edited November 2021

    Serendipity, my MO talked about me taking Xeloda as a preventative, I will see her in a couple weeks to discuss. I'm hoping she wants to just keep an eye on me, the SE's are scaring me! I'll keep an eye on this thread to see how things go. Wishing the best for you!

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Nature - thank you! Keep us posted. Many others have found they had minimal SE's. I had such a hard time on it exactly a year ago. My MO promised that at the first sign of any intolerable SE(s) she will take me off. She is giving me a lower dosage than what I started on last year and will remain on that, so I'm hoping that it will be a different experience so I can get through the eight cycles. I'm glad I was able to heal from rads, she wanted me to start the weeks after I had my last session, when she saw my skin she "Nope, see you in three weeks."

  • blue22
    blue22 Member Posts: 172
    edited November 2021

    Hi Serendipity,

    I took Xeloda for 6 months as a preventative. It overlapped with HP infusions. I had severe diarrhea... but that was also partially due to the P. I had hand foot syndrome too. I love to walk / hike and could not go for very long. I found even yoga to be painful due to the increased pressure on the hands and feet in some positions. I wanted to swim... but could not due to Covid. I think these side effects were fairly tolerable because I knew I only had to take it for six months.

    The real downside... is I have still have fatigue and chemo brain. I don't know what the cause is of course. It could be any number of things, including the AI I am currently on, a bit from everything, who knows. I do think Xeloda contributed though.

    If I had to make the decision again, I would still do it. But I really really hate the chemo brain and fatigue...

    I remember also trying to find people who took it as a preventative and not finding much.

    Best of luck to you!

    Blue

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Blue - thank you for posting! I didn't get the hand/foot last year, but preparing for it, just in case. I completely understand the brain fog. I still have it and again my last chemo infusion was in August 20 and my last dose of X was Dec. 31 2020. Some days are better than others, yesterday was a bad day, couldn't concentrate on anything and could barely hold a conversation. It's very frustrating. I wonder if this is something I'll have forever. Then of course there's the thought, way in the back my my head, if it could be the beginning of something else, my father has Alzheimer's and so there's that.

    I've come across many others who are on X, but they are Stage IV, and have not heard of others taking it for maintenance, so it's nice to know there are other's out. Why I started to thread, in hopes of finding others as I had o success last year.

    Have a great day!

  • norcals
    norcals Member Posts: 206
    edited November 2021

    Hi.

    I was on Xeloda for 6 months after AC-T, lumpectomy, and radiation. It was a preventative measure since I did not get a PCR. I believe there are people who get a lower dose but take it longer - 1 year? While I was on Xeloda, I developed headaches. The intensity of the headaches decreased near the end of treatment, but it was scary at first (thought it was brain mets, but MRI was clear). I reduced the length of my daily walks and I wore thick cotton socks which I think helped minimize hand and foot. While I was on Xeloda, I really didn’t like it, but now that a year has passed, I think it was the easiest of the chemos on my system

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    NorCalS - thanks for sharing. You're not the first that has said that SE's, in your case headaches, got better towards the end. I will have to make sure to put my best foot forward and tolerate any SE(s) that present themself/selves. I really want to throw everything at this beast and avoid another recurrence.

  • mamacure
    mamacure Member Posts: 256
    edited November 2021

    So glad that Serendipity started this thread & thank you everyone for chiming in. So helpful!!

    I have so many questions.
    Will I be able to go back to work with X?

    I love walking & hiking too, will I be able to keep up with daily walks?

    If I get nauseated & take constipating meds (zofran) will that cancel out diarrhea?

    I took Claritin for bone pain during neustela shots with AC, I wonder if that will work with X bone pain too I will ask my onc.

    Serendipity: Are you having Carbo right now?

    I see that many of us areTN, we need all the help we can get. I truly hope that radiation plus X will be end of all this for us.


  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Mamacure - I'm glad I started the thread as I felt clueless and really needed insight, not to mention support from others going through the same thing.The members of the Stage IV thread were very nice, but someone made did make sure to point out that it was, indeed, a Stage IV group and so I stopped asking. I get it.

    So many that I've spoken to here and from what I've read in the past on the Xeloda thread for Stage IV, it's very been very tolerable and others go on and adjust very well. My MO was very surprised by my SE's

    When I was on X last year and experienced the SE's that I did; bone pain was the worst, I could barely walk, but again, that was me. I had just finished my ACT & carbo about two months prior. I'm praying that the extreme SE's I experienced were due to residual SE's from that.

    I did not experience hand and foot, but began using Aquaphor every night a week before starting X (doing it now too.) I tried to walk, but was very weak, again had a lot of pain in my feet, but no skin reactions other than a little redness on my palms. from the SE's.

    I struggle with constipation too and X did not change that for me.

    I was nauseous, but nothing that Compazine or Ondansetron couldn't help with. I did lose my appetite, but I made sure to force myself to eat.

    I start on Tuesday or Wednesday, depending on if MO will allow me to do just one dose on Tuesday. I hoping that this time around it is different. I will keep you all posted.

  • mamacure
    mamacure Member Posts: 256
    edited November 2021

    Good luck Serendipity this week on re-starting X. I hope it goes much smoothly this time. I hope you are all healed from radiation too. Thinking of you.

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Thank you Mamacure! I really appreciate it. Its been an emotional day trying to get myself emotionally prepared!

    I am all healed up, thank God!

    Have a great night!

  • mamacure
    mamacure Member Posts: 256
    edited November 2021

    How are u doing Serendipity? Have you started X yet? Thinking of you. I looked up the cost of X today since I’m planning out my insurance for next year. I hope you are doing well.

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Hi Mamacure! Was logging in to update. I was not able to start madame X last week due to a scare. I discovered a blemish on my breast last weekend and panic mode set in. An emergency biopsy, PET Scan and brain MRI all came back negative and I was given the ok to start tomorrow. After last week, I'm ready to get this going and get some more protection in me to prevent this beast from coming back. Thanks for asking. I'll keep you posted.

  • norcals
    norcals Member Posts: 206
    edited November 2021

    Serendipity,

    I hope things go well with Xeloda for you. Hugs

  • blue22
    blue22 Member Posts: 172
    edited November 2021

    Hi Serendipity - good luck with X!


  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    Thank you NorCalS and blue22!

    Just took my first dose

  • lw422
    lw422 Member Posts: 1,399
    edited November 2021

    Good luck, Serendipity!! I hope it goes much better for you this time. I wish you weren't starting with preconceived notions due to your SEs last time, but I'd be dreading it, too. Hugs and best wishes!

    I somewhat expected to be put on Xeloda after radiation since I'm considered TN (low PR+), but my MO didn't believe it would benefit me. Apparently a TN patient who achieves PCR with chemo doesn't get Xeloda, at least from my doctor. I'm glad to not have to take it, but ending treatment is scary.

  • mamacure
    mamacure Member Posts: 256
    edited November 2021

    That was scary Serendipity but you must be so relieved! Take it easy this week! I’m dreading it but also thankful for its whole body protection due to my positive nodes.

    LW, so glad you won’t need it!! You are a neojuvant success story

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    I had a bad day yesterday, was in bed all day. I felt like I had the flu. Today I woke up feeling just fine. Only SE (?) so far seems to be a really bad headache. I started having headaches during rads and they continued, but today's headache has been really intense. Other than that, I feel ok. Hoping that it stays like this, but again, it's only day 2. We shall see.

    Have great night!

  • mamacure
    mamacure Member Posts: 256
    edited November 2021

    Oh no in bed all day Serendipity! I hope that is behind you, glad to hear that you are better. Sorry to hear about the headaches too. Did doc tell you to take anything for heartburn/acid reflex? Also may I ask what dosage you are on? Take it easy!

  • norcals
    norcals Member Posts: 206
    edited November 2021

    Serendipity,

    If the headaches persist during your week off Xeloda, let your MO know so that you get a brain MRI just in case. Headaches are not a common side effect of Xeloda, but it definitely hit me especially in the beginning. Make sure that’s all it is. Once I had the MRI and it was clear, I was able to deal with the headaches better

  • serendipity09
    serendipity09 Member Posts: 769
    edited November 2021

    NorCalS - thank you! I am documenting the timing and intensity of the headaches and will be sure to let the MO know if they decrease during my off week. I had a brain MRI a week ago tomorrow because the headaches started during radiation, but they have definitely intensified since starting X.

    I had a bad night last night. Woke up at 1:30am feeling very heavy and anxious. It was a little scary.

    What I'm finding difficult is the timing of having to take the meds 10-12 hours apart and 30 minutes after a meal. First, I have no appetite whatsoever and am forcing myself to eat first thing in the morning, makes me feel gross, if that makes sense. Second, I eat dinner at 5pmish and that's too early to take my second dose unless I'm getting up at 5am to be able to take my second dose at 5:30pm. UGH! Never-ending!

    Mamacure - thanks! I'm currently taking 3000mg. I was on 3500mg last year and did not do well at all This dosage has been very tolerable thus far. MO did not discuss heartburn or acid reflux.