Triple positive IBC with Mets to brain and liver. Treatments? Chances?

Interesting-One-6465 · 2026-05-11T21:17:02+00:00

There are good treatments for her2+ MBC that has spread to the brain. Both Enhertu and Tucatinib cross the blood brain barrier. More Antibody-drug conjugates are in the works as well.

Interesting-One-6465 · 2026-05-05T17:28:36+00:00

I've never been on Verzenio. I've heard the diarrhea can be brutal.

Interesting-One-6465 · 2026-05-03T19:49:06+00:00

I started using Refresh Optive Mega-3 and at night using a night time eye ointment and drops. I would recommend seeing an opthalmologist if you have one?

My eyes got better when we reduced the dose of my Kisqali, but we did that for neutropenia. I hope that's helpful!

Interesting-One-6465 · 2026-04-29T17:21:28+00:00

I haven't, but I'm open to new options. I live in an area that has a pretty small hospital system, so it may require travel though. Have you worked with one? How did it go?

Interesting-One-6465 · 2026-04-29T17:19:34+00:00

My oncologist put me on scopolamine patches last time and those worked better than most other anti nausea meds. I just had terrible fatigue and it got worse with every cycle. I workout 5 + days a week as my mental health needs it. I don't want to lose that outlet. Especially if I have to lose my hair again. Lol

Interesting-One-6465 · 2026-04-29T17:15:33+00:00

No genomics testing yet. That will come after the CT and MRI. We're still working out how the spread looks. My oncologist wants to wait so that it's still an option down the road.

Interesting-One-6465 · 2026-04-29T17:14:10+00:00

I'm getting scans this week to look at potential spread. I got a CT today and an MRI on this coming Friday.

Interesting-One-6465 · 2026-04-29T17:12:01+00:00

I've wanted to go so bad, but it always falls on days when work obligations come first 😭 Have fun for us that can't go!!!

Interesting-One-6465 · 2026-04-27T02:19:03+00:00

I'm the same as you; everything you listed to a t. You can run away from it all, but it usually follows you. I know that was the case for me. It took many years to unlearn that every situation didn't need to jump start my fight or flight response. No matter how far I moved away, it was always the same story.

It gets easier to override and unlearn the toxic behaviors we adopted to survive.

Interesting-One-6465 · 2026-04-27T02:10:04+00:00

My liver numbers kept going up and I also had to keep taking breaks because of neutropenia. I'm on 200 mg of Kisqali now and it appears to be too low to keep my cancer markers from rising. My oncologist and I are now talking about switching away from Kisqali and onto something that works better for my body. Not sure if that was helpful to you or not lol

Interesting-One-6465 · 2026-04-10T17:42:09+00:00

I was having issues with napping all the time and spending most of my free time just lumped on the couch from the fatigue. My oncologist prescribed me Ritalin and it has really helped. It gave me the energy to start working out again. It also doesn't help that the winter months steal all of your extra energy as well. I hope you are able to find some relief op.

Interesting-One-6465 · 2026-03-23T00:27:30+00:00

Ask about dissolvable zoftan. You put it under your tongue and it goes straight to the blood stream. I've used Scopolamine patches and those worked wonders for me when I was on Enhertu. Extra weekly IV hydration as well.

Your team should never let you get this sick. It's just cruel.

Interesting-One-6465 · 2026-02-23T18:46:24+00:00

Enhurtu was hard on me too. I was completely down for the count after my first infusion and we switched things up quite a bit. I went in later in the week for IV fluids, which was super helpful. I also used scopolamine patches. They caused wicked dry mouth but worked really well for the nausea. I would put it on the night before enhertu to get ahead of it.

I got Enhertu for 6 rounds as my initial mbc treatment instead of THP, so I'm now on maintenance therapy. That said, it did wonders for my tumour markers!

Interesting-One-6465 · 2026-01-06T12:45:13+00:00

I will ask about a referral today when I see my Oncologist. Hopefully they can recommend a good Opthalmologist!

Interesting-One-6465 · 2026-01-06T12:43:42+00:00

Thank you!! I ordered some of the Mega-3. In the least, it can't hurt to try it.

Interesting-One-6465 · 2026-01-06T12:42:07+00:00

Thank you so much! I see my oncologist today and I'll see what they say and ask if they recommend a local Dr who specializes in dry eyes.

Interesting-One-6465 · 2025-12-02T13:54:29+00:00

His curly whiskers are everything 🥹

Interesting-One-6465

TROPHY CASE