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Old 04-21-2021, 06:16 PM   #1
valleygirl
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Location: Millsboro, Delaware
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Looks like I have progression

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!!
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Old 04-22-2021, 02:19 PM   #2
Pamelamary
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Location: Melbourne, Australia
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Re: Looks like I have progression

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
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 04-22-2021, 03:31 PM   #3
donocco
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Re: Looks like I have progression

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
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Old 04-22-2021, 05:42 PM   #4
valleygirl
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Re: Looks like I have progression

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
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Old 04-22-2021, 08:59 PM   #5
Catherine
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Re: Looks like I have progression

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.
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 04-24-2021, 04:41 PM   #6
Nguyen
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Re: Looks like I have progression

Hi Valleygirl,

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

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Old 04-24-2021, 05:15 PM   #7
valleygirl
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Re: Looks like I have progression

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.
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Old 04-24-2021, 10:10 PM   #8
Nguyen
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Re: Looks like I have progression

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).
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Old 04-25-2021, 03:10 PM   #9
Nguyen
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Re: Looks like I have progression

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.
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Old 04-25-2021, 05:24 PM   #10
valleygirl
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Re: Looks like I have progression

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!!
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