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Topic: Combination of Tukysa, Xeloda and Herceptin

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jul 4, 2020 06:34AM

Malinda815 wrote:

Anyone using the combination of Tukysa.Xeloda and Herceptin? I am going to start this new treatment in August. If anyone can share their experience, that will be really helpful please. I have my worries about side effect

Dx 11/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Dx 9/25/2019, IDC, Left, 2cm, Stage IV, metastasized to brain/bone/liver/lungs, ER+/PR-, HER2+ Radiation Therapy Whole-breast: Brain Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 3, 2020 04:15PM - edited Sep 3, 2020 04:15PM by illimae

Malinda, hows the combo going so far? I'm pretty sure my MO will be switching me to this combo next week. I have very few SE's from H&P but I like to be prepared.

If anyone has tips, I'd appreciate it.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 3, 2020 05:00PM Seilien wrote:

For me, the diarrhea didn't start until a week or 2 later. I couldn't eat immediately. Lost 10 lbs in the first 2 weeks. It seemed ok at first but I'm starting to lose my mind. I needed more and more pills to manage the stomach cramps, diarrhea. I also have weakness in my legs. My skin is blotchy and dry but I don't care because the fatigue is so bad. My dose was lowered twice due to diarrhea for Tukysa and Xeloda. I'm currently in Hospital so I had to stop but I still only diarrhea which has been an issue .
Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 6/1/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Sep 3, 2020 05:26PM illimae wrote:

Seilien, thank you for the info, I wish the drug combo had been easier on you. And I’m sorry to hear you’re in hospital, are you supposed to restart treatment when you’re released or was it too much?

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 3, 2020 06:40PM Malinda815 wrote:

hi Illimae, today is my first day of one week off Xeloda, and keep taking Tukysa. One cycle is three weeks, it’s been two weeks, the side effect for me is nausea and vomiting,stomach upset, weak,and some times insomnia (not sure caused by chemo or supportive therapy ). The first week felt nothing, second week , the weakness got worse, and started to have stomach upset, last two days of the second week, Started vomiting In the morning and before go bed, take a nausea pill when you first time feeling stomach upset, and pretty much can manage to stop nausea. I also find out that take the chemo drugs right away after meal much better than take them later. I would say this combo side effect is much less than I expect. Of course, the side effect could be accumulated , maybe worse in future, hope not. I will continue to share my experience

Dx 11/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Dx 9/25/2019, IDC, Left, 2cm, Stage IV, metastasized to brain/bone/liver/lungs, ER+/PR-, HER2+ Radiation Therapy Whole-breast: Brain Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 3, 2020 06:44PM Malinda815 wrote:

Another thing I forgot mention, I have constipation. Also it happens in second week, again, not sure caused by chemo or supportive therapy.

Dx 11/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Dx 9/25/2019, IDC, Left, 2cm, Stage IV, metastasized to brain/bone/liver/lungs, ER+/PR-, HER2+ Radiation Therapy Whole-breast: Brain Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 3, 2020 06:51PM illimae wrote:

Thank you Malinda, I hope to see continued activity here as more of us begin this combo.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 3, 2020 06:54PM Malinda815 wrote:

hi seilien, I am sorry you are in hospital. My MO told me before, with this combo, she might need put me in hydration. I have been taking them two weeks, I don’t have diarrhea, but I have constipation, I also take some supportive drugs(Compazine and Zofran for nausea) Have you tried Imodium to stop diarrhea? Doeit work?

Dx 11/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Dx 9/25/2019, IDC, Left, 2cm, Stage IV, metastasized to brain/bone/liver/lungs, ER+/PR-, HER2+ Radiation Therapy Whole-breast: Brain Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 4, 2020 09:32AM Malinda815 wrote:

Keep updating. I had very bad diarrhea first time this morning. I am on my vacation now, I probably will have to heading back soon. Took two capsule Imodium. Today is my second day off Xeloda, third week of this combo, first cy

Dx 11/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Dx 9/25/2019, IDC, Left, 2cm, Stage IV, metastasized to brain/bone/liver/lungs, ER+/PR-, HER2+ Radiation Therapy Whole-breast: Brain Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 6, 2020 12:43PM Malinda815 wrote:

Third day off Xeloda of cycle one , I am feeling much much better. Fatigue become less. Two days ago I had terrible diarrhea. I immediately took two capsules Imodium, and every two Hours take one capsule. totally daytime took four and took two before go bed.Fortunately diarrhea was stopped. so far is okay. Keep watching and hopefully my body get used to these drug

Dx 11/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Dx 9/25/2019, IDC, Left, 2cm, Stage IV, metastasized to brain/bone/liver/lungs, ER+/PR-, HER2+ Radiation Therapy Whole-breast: Brain Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 8, 2020 03:44PM illimae wrote:

It’s official, I start next Tuesday.

Cross post:

Ok, big news!

I am changing treatment to the Herceptin, Xeloda, Tukysa combo, not due to progression but voluntary. If Xeloda becomes a SE problem, I can reduce the dose or drop it, I can also go back to my first line H&P, if I want to. Also, bombshell, I will stop tamoxifen! MO feels my cancer is driven primarily by the HER2+ and since my body is good, we should focus on the brain (Tukysa shows significant overall survival and progression free survival benefits for brain mets). Stopping tamoxifen has me super excited because blocking estrogen made my knee joints hurt, made me bitchy and killed my sex drive.

(Sorry, if TMI)

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 10, 2020 12:56PM - edited Sep 10, 2020 01:10PM by Seilien

After being released, I stopped taking chemo for at least 2 weeks. I feel tired but the diarrhea has stopped. I've had diarrhea for 3 straight weeks. I agree, i do have some insomnia. My eyes have been also feeling sensitive lately. I'm pretty sure I will be starting chemo again next week.Lucky me, I dont have much nausea mostly because I dont feel like eating. For diarrhea, I take 2 Limodos. Immodium doesn't work well for me.

Just to give you an idea, I have meds for anxiety(2), energy, insomnia(2), diarrhea(2), stomach cramping(2), blood thinner.

My legs are very weak still and i got rashes on my hands and feet. It hurts a little but manageable but I'm mostly stationary.

Dx 7/30/2018, Right, Stage IV, metastasized to brain, ER+/PR-, HER2+ Radiation Therapy 6/1/2019 Whole-breast: Breast, Brain Surgery 11/21/2019 Reconstruction (right): Tissue expander placement Chemotherapy 7/27/2020 Xeloda (capecitabine) Surgery 8/27/2020 Reconstruction (left)
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Sep 15, 2020 08:12PM illimae wrote:

Well, I started today. I don’t know how fast the SE’s come on but nothing yet. I’m always nervous about taking a new med, not knowBig how I’ll react, especially after experiencing all the severe effects from chemo twice (taxotere and taxol) landing me in the ER once and discontinuing both after just minutes. Hopefully, when I do get SE’s, they are manageable and the benefits are worth it.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 17, 2020 06:58PM Malinda815 wrote:

Hi illimae, I also had terrible terrible SE from taxol, I felt I almost die of it. That was my second time have it and like 2 minutes after they gave to me, my belly extreme pain and felt like my organs were moving together , they immediately stopped it after 15 minutes, my oncologist gave the order : continue it. So my nurse just adjusted it to very very slow rate, and my body accepted it. Now I am on cycle 2 of this new combo. The EF is Manageable so far, but I have this depression really bother me, I really wish treatment could just treat ,not with other problems!

Dx 11/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Dx 9/25/2019, IDC, Left, 2cm, Stage IV, metastasized to brain/bone/liver/lungs, ER+/PR-, HER2+ Radiation Therapy Whole-breast: Brain Chemotherapy AC + T (Taxol) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab)
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Sep 17, 2020 07:49PM illimae wrote:

I agree Malinda. Fortunately for us and future patients, more research focus is on easing SE’s.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 20, 2020 09:53PM illimae wrote:

So, day 6 I had a mild upset stomach (like being hungover) and I did end up vomiting. I’m going to try the anti nausea meds at 9am and 4pm tomorrow to see if I can prevent it. Nothing else to report yet but I know something more is likely.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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