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Topic: Is anyone taking TUKYSA ?

Forum: Immunotherapy - Before, During, and After — Discuss your experiences with the benefits, risks, and side effects of immunotherapy treatment for breast cancer.

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Posted on: Apr 3, 2021 05:14AM

Posted on: Apr 3, 2021 05:14AM

kitkat703 wrote:

I have been taking this drug for about 4 months now. I was started at 600 mg but had to drop to 300 mg daily due to serious diarrhea.It is supposed to be able to cross the blood/brain barrier and stop MBC from getting into your brain. I had 4 brain Mets removed in 9/2020 with radiation. Does anyone else take this and what is their experience ? This drug was a part of the HER2Climb trial.

Dx 4/5/2018, DCIS/IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 2/2 nodes, ER+/PR+, HER2+, ISH Chemotherapy 5/20/2018 Other Targeted Therapy Tukysa (tucatinib) Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Other part
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Apr 10, 2021 05:20AM elenas401 wrote:

I was just prescribed Tukysa and will get it delivered next week. I have progressed on Herceptin and Perjeta but have not been diagnosed with brain mets,. Everyone on here on Tukysa seems to have brain mets and I'm concerned that I'm getting Tukysa now and not saving it for if I have brain mets later. Has anyone taken it for other involvement?

Dx 1/2017, Right, 6cm+, Stage IV, metastasized to lungs, Grade 3, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Chemotherapy Chemotherapy Taxol (paclitaxel)
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Apr 10, 2021 06:09AM - edited Apr 10, 2021 08:46AM by kitkat703

Hopefully, this will PREVENT brain Mets. This drug can pass the blood/brain barrier and the hope is it can prevent mbc before it gets in the brain. It was just approved in 4/2020 so it's just becoming more used and prescribed now.

Watch out for diarrhea, its one of the worst side effects, in trials a few people died just from diarrhea. Keep that in mind and keep your dr informed.

Dx 4/5/2018, DCIS/IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 2/2 nodes, ER+/PR+, HER2+, ISH Chemotherapy 5/20/2018 Other Targeted Therapy Tukysa (tucatinib) Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Other part
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May 8, 2021 03:58AM - edited May 8, 2021 03:58AM by txsurvivor13

Hey! I am working on getting enrolled in the trial for Her2Climb. I just had significant progression on Herceptin and Perjeta. I don't have mets to my brain. My progression was to several bones and lung. I was reading about the diarrhea and how horrible it was. I will be interested to see y'alls journey with this.

Dx 9/5/2013, IDC, 5cm, Stage IIIB, Grade 2, 7/10 nodes, ER+/PR+, HER2- Chemotherapy 9/18/2013 AC + T (Taxol) Surgery 3/25/2014 Lymph node removal; Lymph node removal (Left); Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Radiation Therapy 4/22/2014 Breast, Lymph nodes Targeted Therapy 4/29/2014 Herceptin (trastuzumab) Hormonal Therapy 6/5/2014 Dx 11/6/2018, IDC, Left, Stage IV, metastasized to bone/lungs, ER+/PR-, HER2- Chemotherapy 11/29/2018 Taxotere (docetaxel) Targeted Therapy 11/29/2018 Perjeta (pertuzumab)
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May 8, 2021 04:40AM - edited May 8, 2021 04:40AM by kitkat703

I just got my second CLEAN brain MRI since starting Tukysa. :-))))

This is not just for brain mets, but since Tukysa can get into the brain,it will hopefully keep MBC from taking hold in your brain, previously un-reachable with typical treatments.It is an anti-cancer drug that can go where no med has gne before.

DO NOT LOSE HOPE!! EVER!!

Dx 4/5/2018, DCIS/IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, 2/2 nodes, ER+/PR+, HER2+, ISH Chemotherapy 5/20/2018 Other Targeted Therapy Tukysa (tucatinib) Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Other part
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Feb 13, 2022 06:34AM sunny1997 wrote:

Is Anyone taking Tucatinib with Herceptin only, no chemo??

I was on Kadcyla for the last 6 years, after I had progression on the Herceptin and Perjeta.

I have had to stop the Kadcyla as I've been diagnosed with cirrhosis of the liver, with portal hypertension, ascites, and esophageal varices. All of this presumably due to the cumulative effect of all the chemo I've had since my diagnosis 25 years ago.

I have asked my oncologist about going back on just the Herceptin and Perjeta, as it did keep me Ned for almost 3 years, but she was not keen on the idea, stating that you don't go back on something that you had progression on.

Any further chemotherapy could put me into acute liver failure, so I am researching like crazy trying to educate myself on what's out there before my next visit with my oncologist.

I've been off the Kadcyla since October, and my most recent pet scan on Wednesday showed that I am still thankfully NED. I've got labs this coming Monday, so more info to add to the equation.

I even contacted Seagen,the maker of Tukysa, looking for information on possible liver issues when just taking it with Herceptin, but they couldn't help me🤷

Any info at all is appreciated!

Dx 3/1997, IDC, Right, 4cm, Stage IIB, 5/36 nodes, ER+/PR-, HER2+ Surgery 3/4/1997 Mastectomy; Mastectomy (Right) Chemotherapy 11/6/2012 Taxotere (docetaxel) Targeted Therapy 1/6/2016 Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy Other Chemotherapy AC Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Targeted Therapy Perjeta (pertuzumab) Local Metastases Brain
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Feb 24, 2023 03:00PM anotherone wrote:

hey - how you doing on tucatinib ? Is there a thread for it ? Interested to see how if I wanted to avoid capecitabane and the results of it ...

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. On Kadcyla now as had progression on H&P Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2- Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/17/2019 Abraxane (albumin-bound or nab-paclitaxel) Surgery Lymph node removal; Mastectomy; Mastectomy (Left); Reconstruction (Left): Tissue Expander Radiation Therapy External: Chest wall Targeted Therapy Herceptin (trastuzumab)

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