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
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Dec 1, 2021 12:27AM mamacure wrote:

How are you doing Serendipity? Are you on the off week?

My natural path oncologist wants me to take vitamin b6 during xeloda. He said cetaphil cream will be good for hands & feet, it’s what I have on hand. I get to remove my port soon, do you still have yours?

Hope you are doing well. Take care!

P.s. curious how big are the pills

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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Dec 1, 2021 09:58AM serendipity09 wrote:

Hi Mama!

Yesterday was my first day of my week off. SE's started to kick in somewhat over the weekend. My bones/joints hurt, similar to what I felt last year, but not as bad,I hope it stays that way. My finger tips are sore, almost like they feel full, they are not swollen. I've had two mouth sores. So far no issues with the skin on my feet, but as I mentioned before I apply Aquaphor and wear silicon socks every evening. My skin is dry, bu that was expected. The only thing that's really concerning for me are the headaches, but they started during rads, but since I started X have intensified.

The pills are pretty big, maybe 3/4"

I've been taking Vitamin B6 and B12 since I finished chemo last year, but I honestly don't remember why, lol?

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde
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Dec 1, 2021 01:22PM norcals wrote:

Serendipity,

I’m sorry that you’re having to deal with the headaches. It really does make Xeloda a very tedious and dragged out experience. I really hated Xeloda while I was on it (more so than AC or taxol) and MO was surprised with the number of complaints and SE since I had very few complaints during the “stronger” chemo drugs. I think with AC and taxol, the premeds (especially the dexamethasone) helped me feel better.

I hope your headaches start to reduce in intensity soon. Hugs

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/24/2019 AC + T (Taxol) Chemotherapy 4/6/2020 Xeloda (capecitabine) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Dec 1, 2021 07:15PM serendipity09 wrote:

NorCalS - thanks! I agree with you, I dislike Xeloda more than ACT & Carbo. Xeloda is no joke and I feel like the SE's are just starting. Yesterday I felt as if my fingertips were "full," today they feel like they are going to explode, they burn and hurt and as of a little while ago, my toes are starting to feel the same. I know I have to let my MO know, but I'm trying to give it a few days now that I'm in my off week to see if things settles down. She told me from the beginning she would take me off, which I don't want, but know that I risk permanent damage. SIGH! I wish this wasn't so crappy.

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde
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Dec 3, 2021 07:44PM mamacure wrote:

Sorry to hear that Serendipity & NorCal! Those other chemos were hell for me. My onc said X will be the easiest of all….we will see. Scared.

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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Dec 3, 2021 08:59PM serendipity09 wrote:

Mama - My MO told me X "would be a breeze compared to AC&T" and so so many others have tolerated it so well. My body just does not like it as it didn't like rads either, lol. I'll get through it. Don't be scared, you've got this! {Hugs}

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde
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Dec 4, 2021 12:11PM mamacure wrote:

Thanks Serendipity. How often do you get blood draws for X? Now I’m thinking to keep my port in longer for it.

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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Dec 4, 2021 02:00PM serendipity09 wrote:

I go at least once a month. My port was taken out during my exchange and I wish I still had it, but we didn't know until a few days after the surgery that the beast had returned :(

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde
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Dec 5, 2021 01:59AM blue22 wrote:

Hi Serendipity,

My MO recommended soaking my hands and feet in cold water - I think it was twice a day. I did that for quite a while, especially after taking a walk. I bought a little collapsible tub for my feet and used a bowl for my hands and watched comedy on my computer or phone while I soaked. I feel like it helped.

I agree, Xeloda is no joke. I think it really put me over the edge with the chemo brain, even though it is not supposed to be one of the treatments that does that. I know we reduced my dosage multiple times. I had terrible diarrhea the entire time. I took immodium, but that just gave me constipation which considering I could stay home from work, I thought was worse. As disgusting as it sounds, I just got used to explosive diarrhea... it was part of life.

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/15/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2- Surgery 7/30/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal; Mastectomy; Mastectomy (Left) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Dec 5, 2021 11:21AM serendipity09 wrote:

Blue - thank you! Never heard of soaking in cold water. I honestly don't know if my feet could handle it because of the neuropathy. Going to have to try and see. YES to the chemo brain, it's terrible. I've always suffered from constipation. X has actually helped, somewhat, with that. Probably the only good thing about it, well that and hopefully attacking those cancer cells.

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde

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