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Old 04-12-2014, 04:35 PM   #16
Joan M
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Join Date: Oct 2007
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Re: It's Not Working! Three Weeks Of Nothing But Side Effects!

Karen,

I'm very sorry to hear this! STUPID cancer!!!

I noticed that you haven't tried any of the platinum drugs, as in carboplatin. Some oncologists have replaced Adriamycin with Carboplatin, due to A's known potential cardiac toxicity. They use TCH, or taxotere, Carboplatin and Herceptin.

Here's a metastatic HER2+ trial in Italy that's using Carboplatin:
http://clinicaltrials.gov/ct2/show/N...static&rank=74

Here are some other trials for HER2+ advanced bc. Some of them are not in our area, but since you go to MSKCC, you might be able to enroll in them anyway via various arrangement. Also, some of these trials are phase 1, or dose escalation trials. But that's not necessary bad, since H started that way at some point. Also, those trials also look at efficacy, and your onc would be able to give you input. Also, sometimes an onc may use an FDA-approved, even if it was approved for some other cancer or something else. Hence, survivors taking metformin, etc.

Ruxolitinib, which is already FDA approved for myelofibrosis. The trial is at Columbia U Medical Center. They're not yet recruiting, but the drug is already FDA approved. It's just a matter of whether is will work for advanced, HER2 bc.
http://clinicaltrials.gov/ct2/show/N...astatic&rank=3

PD-0332991. This drug made a big splash at ASCO last year based on a trial for solid tumors. The drug is a CDK 4/6 checkpoint inhibitor. The trial includes Kadcyla. U Penn. They are not recruiting yet, but you could find out when they might be. It could be close.
http://clinicaltrials.gov/ct2/show/N...static&rank=99

City of Hope. Paclitaxel albumin-stabilized nanoparticle formulation.
http://clinicaltrials.gov/ct2/show/N...static&rank=44

Entinostat. Some sort of inhibitor. MD Andersen.
http://clinicaltrials.gov/ct2/show/N...static&rank=77

BYL719 with Kadcyla. A kinase inhibitor. Northwestern.
http://clinicaltrials.gov/ct2/show/N...static&rank=79

LJM716. HER3 antibody that is a AKT inhibitor. Mass General.
http://clinicaltrials.gov/ct2/show/N...tatic&rank=100

ONT-380 with capecitabine and/or trastuzumab. Several U.S. locations.
http://clinicaltrials.gov/ct2/show/N...tatic&rank=100

ONT-380 with Kadcyla.
http://www.clinicaltrials.gov/ct2/sh...+Cancer&rank=1

ganetespib (see modi)
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=128

another ganetespib study
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=193

BIBW 2992 (afatinib). Phase 3. This trial is ongoing, but not recruiting. However, the FDA already approved the drug as Gilotrif for the treatment of NSCLC. It's a TKI that I believe addresses EGFR mutations. The drug is put out by Boehringer Ingelheim. We met with them two years ago at SABCS, but they seemed more interested in having us get out the word then wanting input from HER2+ mets survivors!
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=132

Irinotecan. UCSF. I know somebody who's onc is giving her this drug for mets. She's doing pretty well. She's not HER2+.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=152

212 Pb-TCMC-Trastuzumab Radio Immunotherapy. University of Birmingham and UCSD. Mimicking Kadcyla ... sort of.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=203

Agatolimod and Herceptin. Stimulating the immune system. Ohio State U.
http://clinicaltrials.gov/ct2/show/N...ve%22&rank=155

Hang in there. You have options!!

Joan
xoxo
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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