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 2, 2021 11:14AM - edited Nov 5, 2021 05:04PM by serendipity09

Posted on: Nov 2, 2021 11:14AM - edited Nov 5, 2021 05:04PM 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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Jul 4, 2022 01:58PM mamacure wrote:

Hi ladies,

I finished 8 cycles of Xeloda last night!!! Yay yay yay! I hope it did the job. It was tolerable than expected. Little pinkie toe bled little but no biggie. Nausea, diarrhea were minimal. I only took pepsid once. I did not take too much vitamin B so will take more. So happy I don’t have to force eat before X anymore. Wishing you all the best. Keep in touch!!

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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Jul 4, 2022 05:26PM serendipity09 wrote:

Hi Mamacure!

YAY!! So happy you are done! I pray that X did its job for you. Now it's time for you heal.

I'm still struggling with SE's, the most severe is the neuropathy in the hands and feet. I have a feeling it's permanent.

Please do keep in touch.

Sending you warm thoughts and many thanks for being so supportive!!

Hugs <3



"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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Jul 6, 2022 06:48PM - edited Jul 7, 2022 09:09AM by hopeheal

Mamacure congratulations on finishing (!) and best wishes for the future. You did it! Yes tell me about the force-feeding, intrusive.

Serendipity, my fingers started feeling painful at around Xeloda cycle 5 and MO switched me to a less dose-heavy schedule. Feeling better on it. I very much hope your neuropathy is not permanent, from what I heard most likely will heal but healing neurons take a while. I am still dealing with leftover neuropathy in my toes from initial chemo.

ER weakly positive, being classified as triple negative. Dx 3/1/2021, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR-, HER2- Chemotherapy 3/1/2021 Xeloda (capecitabine) Chemotherapy 4/6/2021 AC Surgery 9/1/2021 Lumpectomy (Left) Radiation Therapy 11/16/2021 Whole breast: Left breast, Lymph nodes
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Jul 6, 2022 07:03PM serendipity09 wrote:

Hopeheal - thank you! I sure hope it they heal!

"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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Sep 3, 2022 09:13AM kater2021 wrote:

Good afternoon, all! Thanks so much for starting this thread. I was diagnosed with Stage 3b TNBC in Oct 21, have done 6 mos chemo and immunotherapy (A/C, taxol, carboplatin, keytruda), bilateral mastectomy with tissue expanders placed in May 22-- pathology indicated resolution of breast tumor but residual cancer in 2 of 7 nodes, 6 weeks radiation to chest wall and axilla, and about to start Xeloda and Keytruda on 9/15.

My MO did test for DPYD gene / DRD deficiency- and thank goodness, because I have the DPYD variant (score 1.0- meaning I am an "intermediate metabolizer" which is associated with severe side effects and even death-- 1 or 10 people with this genetic variant died on full dose Xeloda!!). I am going to start at 50% dose (2000mg) and be closely followed -- but I AM SCARED! In caps to highlight how I feel about it-- I'm actually pretty terrified. But I'm also terrified of doing nothing systemically given that there was *still* cancer in my lymph nodes after 6 mos of all that heavy duty chemo AND immunotherapy.

Does anyone else on this thread have the genetic variant/DRD deficiency? I read that 30% of people with this variant end up in the hospital at some point even if they do a dose-guided treatment (starting at 50% and adjusting up or down depending on response). I would love to connect with someone else in this situation, as it feels incredibly scary to walk into this knowing the risks.

I am grateful to those of you who started this thread, and have made note of all the things that seemed to help-- and welcome any other suggestions for how to reduce or manage SEs even if you don't have the DPYD variant.

And.... I would STRONGLY encourage anyone else about to start to GET THE DPYD test!!!!!!! The risks are real- and it is rare but if you have it, the consequences are truly potentially fatal.

Thanks, all-- so appreciate the breastcancer.org community and the support offered, it makes a hard journey a bit easier..

Chemotherapy 11/1/2021 Other Immunotherapy 11/1/2021 Keytruda (pembrolizumab) Radiation Therapy 7/20/2022 Accelerated partial breast: Lymph nodes, Right breast, Chest wall Surgery Lymph node removal (Right): Sentinel, Underarm/Axillary; Mastectomy (Left): Modified Radical; Mastectomy (Right): Modified Radical; Prophylactic mastectomy (Left); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander
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Sep 3, 2022 10:06AM serendipity09 wrote:

Kater - I don’t like to say welcome, as this is the club no one should have to join, but nonetheless welcome to our community

I’m sorry that I cannot attest to having the gene/deficiency and I believe I was tested for it. I hope that others will chime in and answer some of your questions. In the meantime, we understand why you are so scared and we are here for you. Just a thought, maybe you should start a thread regarding the DPYD/DRD, there very well may be others on the site that can tell you their experience/knowledge. Regardless, you are def more than welcome here!

There is nothing simple or easy about any of this and you need to feel supported, so you’ve come to the right place!

As far as Xeloda goes…everyone reacts differently, I had a harder time than most. As others will tell you it was very tolerable with little side effects. My side effects were not the normal SE’s.

Warmest thoughts to you!

"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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Sep 3, 2022 12:39PM norcals wrote:

Hi Kater2021.

I was diagnosed with TNBC 3c/4 (supraclavicular nodes) and had neoadjuvent ACT before lumpectomy. The chemo killed 99% of cells in the breast tumor bed, but I had a positive node. At the time (2019) keytruda was not used as neoadjuvent treatment, but I was given the option as part of a clinical trial to have keytruda as adjuvant treatment after radiation. Unfortunately, I did not have enough cancer cells to test for PDL-1 status, so I did not qualify for the clinical trial. At the time, MO felt that adjuvant chemo was not necessary, but due to my concerns we went forward with Xeloda. I’m pretty sure I was not tested for DPYD. Side effects were not pleasant, especially the headaches, but I got through it.

For what it’s worth, I think my MO believed keytruda would have been more effective at killing any remaining cancer cells than Xeloda.

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/23/2019 AC + T (Taxol) Chemotherapy 4/5/2020 Xeloda (capecitabine) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Sep 5, 2022 05:43PM mamacure wrote:

Hello Kater,

You had the big stick treatment like me including Carbo ugh. Good job getting this far. Xeloda hopefully at 2,000 I hope will be easy for you. I asked my Onc to test me but she dismissed it as unnecessary but I forgot what she said about it. I’m really hoping keytruda & X killed every thing left by chemo. Stay vigilant & keep close touch with your medical team. I’ll be thinking of you! Now I am taking a bunch of supplements to prevent it from coming back. Hugs to you & everyone on here.

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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Sep 6, 2022 02:52PM serendipity09 wrote:

Hey Mamacure! Hope are doing well!

"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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Sep 8, 2022 03:16PM mamacure wrote:

Hi Serendipity! I hope you are doing well & no side effects. 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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