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.

Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/16/2020 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 11/2/2020 Xeloda (capecitabine) Surgery 7/9/2021 Reconstruction (Left); Reconstruction (Right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Nov 5, 2021 08:10PM serendipity09 wrote:

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."

Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/16/2020 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 11/2/2020 Xeloda (capecitabine) Surgery 7/9/2021 Reconstruction (Left); Reconstruction (Right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Nov 6, 2021 12:55AM blue22 wrote:

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

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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Nov 6, 2021 10:27AM serendipity09 wrote:

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!

Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/16/2020 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 11/2/2020 Xeloda (capecitabine) Surgery 7/9/2021 Reconstruction (Left); Reconstruction (Right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Nov 6, 2021 04:48PM norcals wrote:

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

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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Nov 6, 2021 05:55PM - edited Nov 16, 2021 09:25AM by serendipity09

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.

Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/16/2020 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 11/2/2020 Xeloda (capecitabine) Surgery 7/9/2021 Reconstruction (Left); Reconstruction (Right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Nov 6, 2021 11:47PM mamacure wrote:

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.


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 7, 2021 12:00PM serendipity09 wrote:

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.

Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/16/2020 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 11/2/2020 Xeloda (capecitabine) Surgery 7/9/2021 Reconstruction (Left); Reconstruction (Right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Nov 8, 2021 08:02PM mamacure wrote:

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.

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 8, 2021 08:24PM serendipity09 wrote:

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!

Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/16/2020 Lymph node removal; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Chemotherapy 11/2/2020 Xeloda (capecitabine) Surgery 7/9/2021 Reconstruction (Left); Reconstruction (Right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Nov 15, 2021 08:57PM mamacure wrote:

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.

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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