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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

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.

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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Dec 15, 2021 07:16PM mamacure wrote:

How are you doing Serendipity?

I saw a video today about TNC non-basal benefitting from Xeloda vs basal. I’m going to ask my Onc about what type I am.

DX 3/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemo Apr '21 Taxol, Carbo, Ketruda | Chemo May '21 Abraxane, Carbo, Keytruda, AC | Mastectomy Left + ALND Oct '21 | Radiation Nov '21
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Dec 15, 2021 09:13PM - edited Dec 15, 2021 09:14PM by Serendipity09

Hi Mamacure! I'm hangin in there the best I can. I have good days and bad days. I was put on gabapentin to help with the neuropathy, it has helped my fingers a bit, but not so much my feet. Still suffering with terrible headaches, but it's not related the Xeloda as they started during rads. Saw MO today, she's going to have me do another Brain MRI to make sure nothing was missed. She'll put it through and we hope the insurance will approve it. She doesn't want to decrease my dosage of X. If I don't have any improvement or if I can't handle it anymore, she'll have me stop X completely. I'm going to do my best to just deal with it as I want all the protection I can get to prevent a recurrence.

Let me know what your MO tells you about the basal/non-basal, you've peaked my interest.

You should be about half way done with rads right? (sorry haven't kept up with the Nov. thread) I hope you are doing ok.

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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Dec 15, 2021 11:02PM blue22 wrote:

Hi Serendipity,

Wishing the best for you with the MRI!

I took Gabapentin, hated it. I felt out of it and loopy. Maybe it was unrelated. Who knows?

What is your dosage? My MO reduced mine a couple of times I think. It is so hard to remember those details.

Blue

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) 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 16, 2021 10:36AM Serendipity09 wrote:

Hi Bue!

Thanks for the well wishes!

I'm taking 3000 mg, 1500mg the morning and 1500mg at night. Last year at this time my MO had already reduced my dosage of X several times.I was surprised she didn't yesterday. We'll see what happens in the next week. The SE's seem to hit me really hard on my days off.

I don't feel anything on Gabapentin, other than it has helped my fingers a bit. The first night I felt sleepy, but nothing since then.

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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Dec 29, 2021 07:22PM mamacure wrote:

Hi Serendipity,

How are u doing? Hope you are managing ok. I heard from 2 other ladies complaining of headaches during xeloda, so you are not alone in that. I got my first prescription of X in the mail. I’ll be taking at least 3,300 mg per day. I plan to do 8:30 & 8:30 or close to that. Maybe oatmeal in the morning and not sure about evening food. Maybe peanut butter toast. Not sure when I will start but it should be at least a month away.

Take care.

DX 3/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemo Apr '21 Taxol, Carbo, Ketruda | Chemo May '21 Abraxane, Carbo, Keytruda, AC | Mastectomy Left + ALND Oct '21 | Radiation Nov '21
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Dec 29, 2021 07:38PM - edited Dec 29, 2021 08:43PM by Serendipity09

Hi Mamacure!

I was just about write and ask how you were doing, wondering if you had started yet? Did you finish rads? Hoping everything went well!!

The headaches are no fun, unfortunately they are worse on my week off. I had several nose bleeds over the weekend, which was part of my 7 days off. I'm hoping it was just dryness of the air in the house because of the heater. I started my 3rd cycle yesterday.

Several other SE's have started to present themselves; loss of balance is one of them. Had a fall last week and hurt my right arm (bad side); neuropathy is getting worse, especially in the feet, bone pain, muscle weakness and I'm struggling with my fine motor skills, dexterity is being affected. My PT and massage therapist sent notes to my MO as they are concerned; I'm not progressing at all; I'm actually worse then I was a year ago. Ortho put a call in to MO too :/. I have a feeling she's going to take me off. No signs of hand/foot, thank God! I'l finish this cycle and then have my appointment with her, assuming she doesn't call me before.

As far as eating, I don't have much an appetite these days, so in the morning I'll have a piece of toast and then take X about half hour later, 8:30/9am and then in the evening, around d 8:15pm, I'll do a piece of toast with peanut butter or if I haven't eaten much earlier in the day, a small bowl of cereal and take X 8:30/8:45pm.



Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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Dec 29, 2021 10:09PM mamacure wrote:

I’m sorry to hear that Serendipity!! I hope your arm from the fall is ok. Oh dear.I get dizzy at times & I haven’t even started yet! I finished rads ok, no major issues other than some peeling. Scar area looks angry.

Do u think your MO will do a dose reduction before taking u off? After reading, I am more & more convinced that 7 day on 7 day off will be best. Less SEs & less incidences of dose reduction or stoppage. Also less toxic to the body. I’m afraid my MO won’t go for it but I’m going to ask again.

Take it easy Serendipity, sending you hugs!

DX 3/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemo Apr '21 Taxol, Carbo, Ketruda | Chemo May '21 Abraxane, Carbo, Keytruda, AC | Mastectomy Left + ALND Oct '21 | Radiation Nov '21
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Dec 30, 2021 12:28PM Serendipity09 wrote:

Thank you Mamacure! Glad that you are done with rads and that everything went well! My scar looked really angry after rads too, but now that everything is healed and some time has passed it actually looks better than the no rads breast scar (which doesn't look too bad), my rads side the scar is barely noticeable. Funny, how that works.

I don't think my MO will do a dose reduction, maybe she'll change to the 7/7, worth asking. The fact that my SE's seems to be worse on my off days is telling of how much my body is not liking X. Like I said, I'll finish this cycle and see her and see what she wants to do. It was explained to me that my percentage of possible recurrence wwouldl increase 3% if I didn't take Xeloda; that was last year and not having done rads. Well, the recurrence happened within a month. Now I did rads and I'm hoping that it blasted this beast. I'd like to know what she thinks about my chances of recurrence now. I'm conflicted and stressed.



Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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Jan 3, 2022 01:19PM mamacure wrote:

Wow 3% only… plz keep us posted on what your MO says Serendipity. Hope you feel better this week.

Where does everyone get Xeloda? Specialty online pharmacy like ACCREDO?

I feel like I am getting ripped off and trying to find if local pharmacies will carry it or generic form. Thanks.

DX 3/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemo Apr '21 Taxol, Carbo, Ketruda | Chemo May '21 Abraxane, Carbo, Keytruda, AC | Mastectomy Left + ALND Oct '21 | Radiation Nov '21
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Jan 3, 2022 06:22PM Serendipity09 wrote:

Happy New Year!

Mamacure - I see the MO in two weeks and will see what my options are. If indeed it is 3% than the suffering is not worth it to me. If she'll switch me to 7/7, I'll try and see what happens.

I get my Xeloda shipped to me from my medical group's specialty clinic. I know none of my local pharmacies carry it. Good luck, hope it works out and doesn't cost you too much.

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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Jan 13, 2022 08:51PM Serendipity09 wrote:

Completed 3rd cycle on Monday. Saw the MO yesterday, she decided to give me an extra 7 days off. The bones in my feet feel like they are breaking with every step I take and my headaches are so intense my vision has been affected. I see her again in two weeks and we'll discuss if I continue, if so, same dose, maybe 7/7, a dose decrease or quit all together.

I had MRIs of both shoulders today ordered by the ortho. I don't know if I can blame Xeloda for the shoulder pain or if it's a combo of SE's from rads and X. Most of the other's that I've "spoken" to have tolerated X. Some complained about fatigue, headaches and joint pains, but my goodness, I'm hurting so much. I'm so frustrated. I want to throw everything at this to prevent another possible recurrence.

Mamacure - have you started X?

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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Jan 14, 2022 01:43PM NorCalS wrote:

Serendipity,

I’m so sorry that the side effects from Xeloda are so intense. I had to have two interruptions while on Xeloda, but my side effects were not as severe as what you’re dealing with. Hopefully, your MO can figure out a dosage that works for you.

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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Jan 14, 2022 06:55PM mamacure wrote:

Oh Serendipity, so sorry that your struggle with X continues! Great job completing 3 cycles, anything helps. I’m sure those 3 cycles were hell. Cancer really is living hell at times.

NorCal, glad to hear that you had better go at X. That helps a lot to hear it

My wbc went up ever so slightly so I avoided bone biopsy but if it does not go up again next week, I have to have it done. I’m supposed to start X in 2 weeks if wbc is ok. My MO is so scary. I have the first cycle ready to go, supposed to take 3,300 per day but may do 3,000. I’m very worried and also concerned that any cracking on the left hand will trigger lymphedema or infection. Eeek! I’ll be happy if I can tolerate some of the cycles even if I can’t finish. Not sure why wbc is down it was fine after my surgery. Hang in there!

DX 3/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemo Apr '21 Taxol, Carbo, Ketruda | Chemo May '21 Abraxane, Carbo, Keytruda, AC | Mastectomy Left + ALND Oct '21 | Radiation Nov '21
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Jan 14, 2022 10:21PM LW422 wrote:

Serendipity and Mamacure--I come by to check on you both and think about you often.

Serendipity, I feel so bad that you are struggling; those bone pains sound so awful. Hugs to you and I hope and pray it gets better.

Mamacure--I hope things are going OK for you. I hadn't heard you mention a bone biopsy; that sounds scary and I hope you don't have to have it done. Yes, cancer is a damn nightmare. Take care and hugs to you, too.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Jan 14, 2022 11:06PM Serendipity09 wrote:

Thank you all!

NorCalS - It truly has been a struggle and I spoke to my MO today and I don't want to take the extra week off. Cycle 4 is supposed to start Tuesday. I will check-in with her on Monday. She does not feel that any of this is permanent.I just want to get this over with. After this next cycle then it's only 4 more to go. If she insists on the break then I'll go along with it.

LW - hope you are well!

Mamacure - hoping your wbc goes up. Be sure to keep your hands greased up. I'm constantly putting on a beeswax salve. Everything I touch is marked up, lol.

I've been a bit nervous as the lab techs are not able to do my bloodwork on my left side and are using my right side for lab work. I pray that it doesn't cause LE.

MRI from yesterday shows that I have capsular contracture on both sides and a torn rotator cuff on the right (bad side). That def explains some of the pain in the shoulders.


Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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Jan 16, 2022 12:38PM mamacure wrote:

Ouch Serendipity! How did those tears happen? Hang in there & I hope 4th cycle of X is tolerable. I like beeswax salve, will have to get some of that.

LW! Always good to hear from you! I think of you often too. I’m hoping bone scan is nothing & I can move on to Xeloda. I just ordered some fruitcake from Texas for hubby. He actually likes fruitcake!?! Lol.

DX 3/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemo Apr '21 Taxol, Carbo, Ketruda | Chemo May '21 Abraxane, Carbo, Keytruda, AC | Mastectomy Left + ALND Oct '21 | Radiation Nov '21
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Jan 16, 2022 12:53PM Serendipity09 wrote:

Mamacure - thanks! I hope so too!

They suspect the tear happened during the BMX or the exchange surgery. Snooze

When is the bone scan? Or did you already have it?

The beeswax salve was a gift sent from a friend of mine in Maine and it is amazing. I order it from Etsy, it's a bit pricey, but so worth it. If you'd like the info, let me know.


Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- 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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