Looks like I have progression

valleygirl · 04-21-2021, 06:16 PM

Looks like I have progression. I'm currently on the HER2climb trial and before that I was on a trial with TDM1 and Keytruda.
What are some other drugs that are available for HER positive cancer?
I'm hoping there's something else where I don't have to loose my hair again.
Been bald twice and it's the worst. I know it's superficial, but can't help it.
Thanks for any insight!!

Pamelamary · 04-22-2021, 02:19 PM

Sorry to hear about the progression. What about T.DXd? (Trastuzumab deruxtecan) Here in Melbourne it is being trialled in the Destiny 07 trial.
Good luck with your next treatment..... Pam

donocco · 04-22-2021, 03:31 PM

What about Tucatinib? Would that be of value. It can cause severe diahrrea and possiible liver toxicity but it wont affect the hair like chemo. I forgot the brand name Tuksa?

Paul

valleygirl · 04-22-2021, 05:42 PM

The Her2CLIMB trial included Tucatinib , Xeloda and herceptin. I received all three. I was hoping there were more treatment options for HER2 positive but can't seem to find more

Catherine · 04-22-2021, 08:59 PM

I hope your doctors are coming up with some good answers and suggestions for treatement. A friend in Arizona is getting excellent help and direction with the Md Anderson group in Gilbert, Arizona. I know nothing about the drugs that are out there. Just wanted to send good wishes your way.

Nguyen · 04-24-2021, 04:41 PM

Hi Valleygirl,

Can you list all detail of your tumor's biology? Also your complete treatment history include start/stop time for each regimen?

Nguyen

valleygirl · 04-24-2021, 05:15 PM

From my foundation one: ERBB2 amplification, CDKN2A/B loss, MLL3 Q1211, TP53 R248Q. First diagnosed in 2011 stage 3C did AC/taxol followed by a year of Herceptin. 2015 diagnosed stage 4 mets to lungs, started taxotere with Herceptin and perjecta. Had
progression in 2016 started NCT0303217 at Dana Farber TDM1/Keytruda. Progression in AUG.2018 started NCT02614794 at UPENN Xeloda, Herceptin and Tucatinib. Progression last week, still just lungs.

Nguyen · 04-24-2021, 10:10 PM

You didn't list ER/PR and no endocrine treatment, so you are ER/PR negative? When was the Foundation One (F1) analysis done? Was the F1 report indicate how strong is ERBB2 amplification? From F1 report, for each of those mutation was there a list of possible treatment? Is there a section (in F1 report) label mutation of unknown significant? Is there a tumor marker (Ca27.29) history? Progression is confirmed by imaging?

When you wrote "just lung", did they image the entire body including brain?
Off the top of my head, ask your oncologist about Margetuximab or DS8201 (trade name Enhertu or Trastuzumab Deruxtecan).

Nguyen · 04-25-2021, 03:10 PM

I am surprise not seeing Lapatinib (tykerb) in your regimen, particularly before T-DM1. You might want to discuss Lapatinib and SYD985 (need to be in clinical trial for this one).

So I believe these meds should be discussed with your oncologist: Lapatinib, Enhertu, Margetuximab, Neratinib, and SYD985. Perhaps a discussion to use circulating tumor cells to recheck ER/PR status which would open up more regimens. When you have to use drug that causes hair loss, perhaps consider cold caps or scalp cooling to reduce hair loss.

Best wishes.

valleygirl · 04-25-2021, 05:24 PM

Yes, er- pr-. My CA-15-3 is always in the 11-15 range, doesn't change. Thanks for all the information, it's greatly appreciated!!