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All TopicsForum: Triple-Negative Breast Cancer → Topic: Xeloda and TNBC

Topic: Xeloda and TNBC

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 18, 2016 02:08PM

knitnpurl wrote:

There's been a lot of news about the Japanese study where they administered Xeloda to TNBC patients after standard treatment, i.e., neoadjuvant chemo, surgery, radiation, who were NED but not PCR at surgery. MY MO is advising that I start this treatment this summer.

I haven't seen much about going on Xeloda or dealing with the side effects except in the stage IV group. I found the chemo and radiation groups were very helpful getting me through those treatments. Since there seems to be a few of us out there whose doctors are starting this regiment, I thought I would start a place for us to share and help each other, while respecting the stage IV group's space. I'm searching for information myself.

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/16/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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Jan 29, 2018 08:39PM Hanging_in_there wrote:

The testing was for either 6 or 8 cycles. I was put on 6 cycles to begin with. I asked for 8 cycles which MO said OK after he saw how I responded to the previous 6 cycles. I've had to reduce prescription by 500mg (1 pill per day) and I've taken time off (more than the 7 days) as needed to recover more from Hand Foot Syndrome.

I start cycle 8 at the end of this week.

Dx 10/31/2016, IDC, Right, 4cm, Stage IIB, Grade 2, ER-/PR-, HER2- Chemotherapy 11/28/2016 AC + T (Taxol) Surgery 4/26/2017 Lymph node removal: Right; Mastectomy: Right
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Jan 29, 2018 10:10PM SoniaL wrote:

Sam0623, My MO plans for me to take 8 cycles. I am hoping for the drug to arrive this week from the specialty pharmacy so that I can begin on February 4th. Not looking forward to it, but ready to get on with it so I can finish.

Dx 4/13/2017, DCIS/IDC, Both breasts, 1/20 nodes, ER-/PR-, HER2- Chemotherapy 5/10/2017 AC + T (Taxol) Surgery 10/20/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 12/12/2017 Chemotherapy 2/11/2018 Xeloda (capecitabine)
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Jan 29, 2018 10:23PM IntegraGirl wrote:

I'm scheduled for 8. Starting round 6 this week

Dx 1/20/2017, IBC, Left, 2cm, Stage IIIC, Grade 3, ER-/PR-, HER2- Chemotherapy 2/27/2017 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 8/30/2017 Mastectomy: Left, Right Chemotherapy 10/1/2017 Xeloda (capecitabine) Radiation Therapy 11/5/2017 Breast, Lymph nodes, Chest wall
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Jan 29, 2018 11:11PM Sam0623 wrote:

Thanks ladies. I will clarify with her when I go back in 2 weeks. I am in the middle of cycle 3, and so far so good- I hope she'd be willing to do the full 8. I do worry I may need a break before I am finished as my white count is steadily declining. I unfortunately may need an extra week off to catch up.



Dx 2/14/2017, DCIS/IDC, Left, 2cm, Stage IIIA, Grade 3, 8/15 nodes, ER-/PR-, HER2- Chemotherapy 3/3/2017 AC Chemotherapy 4/28/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 9/1/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/24/2017 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy 12/15/2017 Xeloda (capecitabine)
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Jan 30, 2018 06:55AM FelineMum wrote:

I've been on X for more than 5 months. And will start my first "real" cycle on Monday.

By that, I mean 2 weeks on/1 week off vs. the unusual 5 days on/2 days off my Former oncologist had me on. My dose also will be increased to where the study data would put it.

My new MO told me that while my previous dose and cycle didn't follow protocol, the benefits should be the same or similar. But without those things having been studied, it's hard to say for certain. I'm glad I get one study-based cycle. I'm also glad I questioned the old MO twice about this so I can't beat myself up about not saying anything.

You can't undo what wasn't done.

Reviews of the old onc's work show things not done or done very differently from protocol. I lost faith in her months ago, but had no clue what to do. Maybe this will help someone else:

- Trust your gut.

- If your doctor doesn't answer your questions or explain things to you, find someone who will.

- You can get a second opinion at any point in the process. www.cancer.gov has a chat box where a rep can give you info on places to get a 2nd opinion within driving distance of your zip code. They also can tell you what the standard treatment protocol is, send links to publications as well as to free databases where you can do your own research.

- IMO: If you feel like your job as a patient is to show up, shut-up and do what you're told - proceed to the nearest exit and run like hell.

Dx 2/2017, IDC, Left, 6cm+, Stage IIIB, Grade 3, 1/3 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 3/3/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 7/27/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 8/27/2017 Xeloda (capecitabine)
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Feb 10, 2018 10:04PM SoniaL wrote:

My Xeloda was finally approved by insurance so I will start taking it tomorrow. I plan to get up and have breakfast then take my 3 500mg pills and head on to church. I'm assuming there will not be any "immediate" side-effects! :) I'm prepared for the worst but praying for the best so hopefully side effects won't be too bad.

Hope everyone is doing well!

Dx 4/13/2017, DCIS/IDC, Both breasts, 1/20 nodes, ER-/PR-, HER2- Chemotherapy 5/10/2017 AC + T (Taxol) Surgery 10/20/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 12/12/2017 Chemotherapy 2/11/2018 Xeloda (capecitabine)
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Feb 11, 2018 05:31PM - edited Feb 11, 2018 05:33PM by deehenn

I am in the middle of my third cycle of X. So far, the side effects have been pretty easy to handle. I have experienced nausea on the 2nd and 3rd days of starting the drug after the rest cycles. Some fatigue and general yucky flu like aches and pains around days 10-14; and the hand foot syndrome has effected my hands - not feet yet. I am using cotton gloves now when I am working and that seems to have slowed the progression of the cracking fingertips. The prescription lotion heals the skin overnight - almost 90% of the time. I found some summer driving gloves on Amazon that I wear at work to protect the skin and that has helped a great deal. I don't like the general overall yucky feeling that I get, but I know it won't last forever. My sleep has been interrupted as well. I can't seem to sleep more than 3 hours at a stretch. I take lorazepam every now and again to catch up on sleep.

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Feb 11, 2018 09:33PM SoniaL wrote:

deehenn...what is the prescription lotion you are using? Glad to hear your side effects have been manageable.

Dx 4/13/2017, DCIS/IDC, Both breasts, 1/20 nodes, ER-/PR-, HER2- Chemotherapy 5/10/2017 AC + T (Taxol) Surgery 10/20/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 12/12/2017 Chemotherapy 2/11/2018 Xeloda (capecitabine)
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Feb 11, 2018 09:50PM Hanging_in_there wrote:

Not an answer to the prescription from above, but..

I just started my eight cycle of Xeloda (I asked for the extra 2). My side effects are mostly Hand Foot Syndrome. After 3 cycles, things were pretty bad and my dose was lowered by 500mg (3500mg) and I tried to think how I could improve HF Syndome, so I stopped walking for exercise and recreation. That was a big help. I don't know why I thought the amount of walking I did was not a problem with Xeloda. I had to take a longer breaks 3 times. After the 3rd cycle I took 16 days, after 6th cycle I took 10 days, after 7th cycle I took 10 days. So now I'm 2 days into cycle 8, I have had to stop grocery shopping and doing lots of walking around the house. I wear my iphone and the days I stay below 1.0 mile I'm ok and the days I go above 1 mile are problems. I'm using 40% Urea which I got off amazon. If you ever get to this place, check the ingredients of the Urea40%, some have parabens in, and some don't. The kind I"m using now is called "UREA 40"


Dx 10/31/2016, IDC, Right, 4cm, Stage IIB, Grade 2, ER-/PR-, HER2- Chemotherapy 11/28/2016 AC + T (Taxol) Surgery 4/26/2017 Lymph node removal: Right; Mastectomy: Right
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Feb 12, 2018 07:46PM deehenn wrote:

The cream is: Triamcinolone Acetonide Creasm USP 0.1%

I use it twice a day to keep the cracked skin on the fingertips from getting out of control.

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