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 11:14AM - edited Nov 5, 2021 05:04PM by serendipity09

Posted on: Nov 2, 2021 11:14AM - edited Nov 5, 2021 05:04PM 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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Feb 3, 2022 07:33AM serendipity09 wrote:

NorCalS - I have the foot pain, not the skin issues. The bones in my feet feel like they are breaking, especially towards the evening. I walk what I can, but the pain in the feet is bad. I thought that by being off of X for the last three weeks that it would've went way. I start next Friday, but on the 7/7. Hoping that the pain in the feet does not get worse.


"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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Feb 3, 2022 05:13PM hopeheal wrote:

Hi Everyone and Mamacure,

I haven't started yet; I am in the process of getting first Rx and met with MO. The drug apparently has to go to a special pharmacy and not sure how long Rx prep will take. MO is a bit more conservative about the timing, said no less than 6 hours apart for each dose. Rx instructions say within 30 minutes after food (or during food?). She mentioned H&F & said hair growth might slow down.

I haven't seen anyone mention the whopping price of the drug, an approximately $200 copay. Dosage is starting at 1,500 per day (500 mg x 3 pills). From what I recall reading here,1,500 is the standard dose and that some ladies had to reduce to 1,000 mg due to SE's, if I remember correctly.

Sorry for all the SE's. I guess I will ride my bike if the foot issues pop up. Mamacure, did your mild nausea prevent you from eating at all and/or did you have to adjust your diet to help? I hope that won't interfere with my meals or with drinking water normally. I am always nervous before a new drug.

ER weakly positive, being classified as triple negative. Dx 3/1/2021, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR-, HER2- Chemotherapy 3/1/2021 Xeloda (capecitabine) Chemotherapy 4/6/2021 AC Surgery 9/1/2021 Lumpectomy (Left) Radiation Therapy 11/16/2021 Whole breast: Left breast, Lymph nodes
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Feb 3, 2022 05:24PM mamacure wrote:

Thank you Norcal, glad to hear that you were able to walk even reduced miles. I hope that rings true for me too. I heard that h&f can get really painful, especially on high doses. Some people start at 4,000+mg per day.

ACCREDO specialty pharmacy wanted me to pay $1,600 for 1 cycle. I went around and managed to order 2nd cycle without paying that. I hope that was an error. It should be $160-200. I saw that Amazon pharmacy also sold it but insurance wud be cheaper I think. My mild nausea went away thank God. I am able to eat normally and drink but need to drink even more I think. I stopped green tea during “on” weeks but still enjoy a cup of coffee. I am so looking forward to my week off next week, so far so good but scared for the next cycles. I am not needing to take pepsid yet. Anyone taking any stomach protection meds? I’m going to ask my naturopath about that. Trying to have yogurt to replenish my gut biome. Have a great week Serendipity, HopeHeal & Norcal

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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Feb 4, 2022 11:13AM hopeheal wrote:

Hi Mamacure, glad the nausea went away. I take Pepcid to help with reflux anyway so I hope that helps.

ER weakly positive, being classified as triple negative. Dx 3/1/2021, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR-, HER2- Chemotherapy 3/1/2021 Xeloda (capecitabine) Chemotherapy 4/6/2021 AC Surgery 9/1/2021 Lumpectomy (Left) Radiation Therapy 11/16/2021 Whole breast: Left breast, Lymph nodes
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Mar 7, 2022 12:49PM serendipity91 wrote:

mamacure - checking in to see how things are going. I hope you are all.

I seem to be tolerating Xeloda a better on the 7/7. Still having headaches, but wondering if it's due to the stress of all this.

Btw - had to create a new account due to the update, hoping to get my old account back.

Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/1/2020 Lymph node removal (Right); Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Surgery 7/1/2021 Reconstruction (Left); Reconstruction (Right) Radiation Therapy 9/7/2021 Right breast, Chest wall, Lymph nodes Chemotherapy 11/1/2021 Xeloda (capecitabine)
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Mar 10, 2022 09:41AM breedebra wrote:

Hi All!

I'm Bree! I have done the AC-T, Lumpectomy, Rads route and started Xeloda due to residual after AC-T, on 2/27. It was Ok the first 5 days on 4000mg divided in 2 doses, 14/7 sched. just some mild nausea and mild heartburn- didn't need to take any meds for this. Then on Day 5 I go for my usual walk and the more I walk the more my upper left chest is squeezing and burning with contraction like pain. I had to cut my walk short because the more I exerted myself the worse it got. Over the next 24 hours this continued to occur off and on even at rest and esp. with exertion- so walks were painful and I stood in the street clutching my chest. Went to urgent care- had a cardiac workup- EKG, Troponin and D-dimer all OK! I was surprised how quickly it dropped my WBCs in just 6 days to 3.5 and ANC to 1.8. I was told it was not cardiac and likely heartburn- went on like this for 4 more days- taking liquid antacid and tums added Famotidine 10 mg twice daily 1 hour before Xeloda and it did not stop the burning, Squeezing chest contraction like feeling. So on Tuesday after my a.m. dose I called my oncology pharmacist and stopped it. by Wednesday morning the burning squeezing contractions were gone. Still have some heartburn but its much better and still taking the famotidine. I talked to my oncologist yesterday and she said she thinks it may be irritation caused by Xeloda on my GI tract resulting in Esophageal spasms? I asked for a DPD deficiency test and she ordered it but said usually that causes severe diarrhea. So I'm off for a week and we will restart at a very low dose 1000 mg/day for the first week and try to titrate up if tolerable.


Does anyone have any thoughts about this?


Thanks!

Treatments pull down is wonky! there's no selection for Capecitabine in the pull down- not on 5-FU on adjuvant on Xeloda/Capecitabine to prevent recurrence. Chemotherapy 5/27/2021 AC + T (Taxol) Surgery 11/5/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Radiation Therapy 1/3/2022 Whole breast: Left breast Chemotherapy 2/27/2022 Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Dx IDC, Left, 6cm+, Stage IIB, Grade 3, ER-/PR-, HER2-
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Mar 10, 2022 10:07AM serendipity09 wrote:

Hi breedebra! Sorry you've had to join us, but welcome! I had the tight/burning chest pretty severe, along with really bad headaches and severe pain in the feet. My MO gave me a month break and changed my schedule from 14/7 to 7/7. The heartburn, if that's what it is, has eased up quite a bit, the pain in the feet not so much, but I'll deal with it.

I read somewhere on here, maybe the Stage IV Xeloda thread, that taking a Pepcid either right before or with X helps. I never did though. Do you take it half hour after you eat?

Hopefully the break and the lower dosage works for you. Maybe ask for the change in the schedule to 7/7. It really has made a difference for me. I'm on 3000mg a day (1500mg am/1500mg pm).


"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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Mar 10, 2022 10:31AM norcals wrote:

Serendipity, I’m glad that the new schedule has been working out better for you. Hopefully, the rest of the cycles will be uneventful.

Breedebra, Xeloda knocked my ANC down to 1.0, so yeah, it’s powerful stuff. I was initially scheduled to have dosage as high as yours, but MO lowered it due to low ANC. Hopefully, the MO can figure out the right dosage and schedule for you

Dx 6/17/2019, IDC, Left, 6cm+, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 6/23/2019 AC + T (Taxol) Chemotherapy 4/5/2020 Xeloda (capecitabine) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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Mar 13, 2022 04:43PM mamacure wrote:

hi everyone, glad to see you all on here with the site updates & all. Welcome BreeD, thanks for sharing your experience with us. I am now half way thru cycle 3. Last week off was heavenly. So far not bad, my wbc went up slightly to 2.3. Still low. Just a touch of nausea, need to drink more water. Still on 3,300 per day 2/1 off cycle. Did have weird heart feelings but it went away during the off week. Doc thinks heartburn. I don’t really take pepsid but have it handy. Moisturizing hands & feet, so far ok. Serendipity, 7/7 schedule sounds good, glad you are doing ok on it. Plz keep us posted everyone!

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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Mar 13, 2022 07:46PM serendipity09 wrote:

Hi Mamacure! Good to hear from you. I'm glad that X hasn't been terrible for you. Keeping you in my thoughts!!!

"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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