Topic: Xeloda for "Maintenance" purposes (not Stage IV)

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Nov 3, 2021 02:14AM - edited Nov 6, 2021 08:04AM by serendipity09

Posted on: Nov 3, 2021 02:14AM - edited Nov 6, 2021 08:04AM by serendipity09

serendipity09 wrote:

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.

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde Dx IDC, ER-/PR-, HER2-
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Nov 3, 2021 03:05AM illimae wrote:

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!

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2021 06:09AM serendipity09 wrote:

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.

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde Dx IDC, ER-/PR-, HER2-
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Nov 3, 2021 07:46AM illimae wrote:

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.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2021 09:20AM serendipity09 wrote:

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.

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde Dx IDC, ER-/PR-, HER2-
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Nov 3, 2021 11:40AM illimae wrote:

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.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2021 10:49PM serendipity09 wrote:

Thanks again illimae!

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde Dx IDC, ER-/PR-, HER2-
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Nov 5, 2021 11:43AM - edited Nov 5, 2021 11:46AM by mamacure

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.

DX 3/23/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemotherapy April 2021 Taxol, Carbo, Ketruda | Chemo May 2021 Abraxane, Carbo, Keytruda ,AC | Integrative Oncology & Accupuncture
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Nov 5, 2021 04:20PM sergionucci wrote:

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?

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Nov 5, 2021 11:11PM serendipity09 wrote:

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.

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde Dx IDC, ER-/PR-, HER2-
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Nov 6, 2021 07:38AM natureyogi wrote:

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!

Dx 2/11/2021, IBC, Right, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Radiation Therapy 9/30/2021 Whole breast, Radiation boost: Right breast, Chest wall, Lymph nodes Chemotherapy 10/3/2021 AC + T (Taxol) Surgery Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right): Modified Radical

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