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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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?

"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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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 3/23/21 | 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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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 IBC, ER-/PR+, HER2-
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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.


"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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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 3/23/21 | 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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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.


"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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Jan 24, 2022 12:01PM mamacure wrote:

Hi Serendipity,

I started Xeloda this morning. My dose is 3,300 mg per day. I asked for 3,000 since my wbc are still low but no go. I took 1 Pepsid with it in case & 1 vitamin B6 earlier. I hope no nausea. Got Imodium ready for diarrhea. My wbc went up slightly so I avoided bone biopsy again! They had the kit ready next to me so I was so relieved.

I hope you are doing well, have you seen your MO? Yes please let me know the link for the Etsy bees wax salve. I plan to moisturize my hands & feet very well. I hope it goes fast & that wbc stay high enough. I have ahard time taking pills so glad these are not monster pills but it’s still a struggle. Applesauce helps them to go down. 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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Jan 24, 2022 03:18PM - edited Jan 24, 2022 05:06PM by serendipity09

Hi Mamacure - I hope everything goes well on the Xeloda or you and that the wbc counts rise. The MO's tend to start off on higher doses. I think the pills are huge, but I have no issues taking them.

I see the MO on Wednesday, we'll see what she says. I see the ortho on Thursday for the rotator cuff and the PS next week.I have a feeling she'sging to keep me off untilI I see the PS. My aldoerm seems to have detached from the implant, making the whole shoulder pain worse. If they're going to do surgery on the shoulder, I'm hoping the PS will jump on board and do everything at once. And since I have to be Xeloda free for 30 days prior to any surgery, I'll fall right in the time frame. All this is wishful thinking though.

I thank God I do to have the diarrhea, X has actually made me regular as I struggled with constipation; the one good thing about it, lol.

The name of the store on Etsy is Maine Street Bee. I love her products. Melissa, the owner, is such a sweet person.

Keep me posted on how you're doing. I really hope it goes smoothly for you!! {Hugs}

"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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Jan 25, 2022 12:30PM mamacure wrote:

Thank you Serendipity! I hope too that you can get everything done in one surgery. I’m sorry that your shoulder was damaged. Ouch. Constipation was the worst with chemo for me so I hope it does not come with X. I skipped pepsid this AM to see if I need it. I hope things go as you plan with the MO & PS. Hugs to you too

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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