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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.

Posted on: Apr 2, 2021 05:14PM

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.

MBC Stage 1V, Have done chemo ;currently on Herceptin..Clean scan. Don't let that fool you. I was diagnosed in 4/2018. Dx 4/5/2018, DCIS/IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/20/2018 Other Targeted Therapy Tukysa (tucatinib) Hormonal Therapy Arimidex (anastrozole)
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Apr 9, 2021 05:20PM 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 9, 2021 06:09PM - edited Apr 9, 2021 08:46PM 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.

MBC Stage 1V, Have done chemo ;currently on Herceptin..Clean scan. Don't let that fool you. I was diagnosed in 4/2018. Dx 4/5/2018, DCIS/IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/20/2018 Other Targeted Therapy Tukysa (tucatinib) Hormonal Therapy Arimidex (anastrozole)
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May 7, 2021 03:58PM - edited May 7, 2021 03:58PM 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: Left; Mastectomy: Left, 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+ (FISH) Chemotherapy 11/29/2018 Taxotere (docetaxel) Targeted Therapy 11/29/2018 Perjeta (pertuzumab)
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May 7, 2021 04:40PM - edited May 7, 2021 04:40PM 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!!

MBC Stage 1V, Have done chemo ;currently on Herceptin..Clean scan. Don't let that fool you. I was diagnosed in 4/2018. Dx 4/5/2018, DCIS/IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/20/2018 Other Targeted Therapy Tukysa (tucatinib) Hormonal Therapy Arimidex (anastrozole)

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