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 02:14PM - edited Nov 5, 2021 08:04PM by serendipity09

Posted on: Nov 2, 2021 02:14PM - edited Nov 5, 2021 08:04PM 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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Sep 16, 2022 09:45AM kater2021 wrote:

Thanks so much, norcals, serendipity09, and mamacure! It is so helpful to have this link, so appreciate all the experiences you have shared (and so sorry that you have had the challenges you have had! you are right, serendity09, not a club any of us wants to belong to!). Appreciate the good thoughts, and yes, mamacure, does feel like a 'big stick' for sure!!

Sorry for delayed response, took a brief vacation (yay!!) between radiation and start of Xeloda (was wonderful and actually had a brief reprieve from thinking about cancer), so was out of town for a bit. Took first dose of Xeloda last night. Definitely feeling anxious, but no SEs from that first dose. About to take 2nd. Starting at 1000mg 2x/day, and will do CBC to monitor weekly. Oncologist was realistic, but despite fact that she is the lead oncologist for the team at our large university hospital, acknowledged she has only had one patient that she knew of with this variant (though assumes there were others before they started routinely testing) -- and that patient had a rough time and eventually discontinued. Sobering, but at least appreciate that she is monitoring and thoughtful about this, and following guidelines as much as they exist.

Will keep you all posted, and in meanwhile, using the helpful advice shared about how to reduce SEs best as I'm able! thank you for your notes, so appreciate it.


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 16, 2022 10:15AM serendipity09 wrote:

Kater - a vacation well deserved!

There are many members who have posted that Madame has been very doable. I had a bit of a difficult time with it, but that's just par for the course for me, I had some medical issues prior to being diagnosed that more than likely contributed to the SE's. I'm grateful to have gotten through it this time.

I hope that all goes well for you with no/minimal SE's. Please check back in and let us know how everything is going!

"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 16, 2022 12:38PM serendipity09 wrote:

Just stopping by to see how everyone is doing during/after treatment.

Hoping you are all well!!

My headaches continue to be an issue, had a brain MRI last week and everything came back clear, thankfully.

My hair growth has been crazy since finishing madame X and my curls are back!! I thought I lost them (other than chem curls.) Two years and some months after my last infusion and five months after finishing X and my hair is past my shoulders curly and if straightened half way down my back. I finally look like my old self, on the surface and clothed, that is.

"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 16, 2022 05:19PM mamacure wrote:

omg Serendipity! Your hair is growing so fast!! Mine is so slow It’s still middle of the neck with sparse patches! Glad scan came out negative. My upper middle back has been aching, stretching & getting accupuncture/acupressure but it’s still there. Also feeling tired but sleeping well

Later, hope X is going well & doc is monitoring closely. Hang in there.

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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