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Old 10-20-2010, 08:11 AM   #1
evlin75
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Neratinib clinical trials.

Anyone have any information on trials for her2neu stage 4?
My daughter wants to avoid chemotherapy as long as possible. She sees this as something that might delay progression for a while. Her bone metastases are stable and no further brain mets as of now, but she has a lymph node lighting up in her chest area.
She is now on Xeloda, Tykerb, Zometa and Herceptin. She has not had a taxine so cannot get into the compasionate expanded access program for TDM1.
She believes Neratinib would be helpful. Thanks for any tips or suggestions.
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Old 10-20-2010, 08:45 AM   #2
Debbie L.
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Re: Neratinib clinical trials.

http://clinicaltrials.gov/ct2/result...+breast+cancer

That's the info from a search of clinicaltrials.gov using "neratinib advanced breast cancer". Note that most of these are using a chemo agent also.

Breastcancertrials.org also lists trials but I can't figure out how to search unless you register and enter the details of the cancer, or just browse randomly.

DL


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Old 10-20-2010, 09:28 AM   #3
evlin75
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Re: Neratinib clinical trials.

Thanks Debbie,
I have researched extensively already and it either gives it with chemotherapy, or a liver threatening drug or randomizes it so you would not know if you were getting the effective medication or a placebo.
I was just hoping there was another trial out there somewhere that would assure her of getting neratinib.
She knows that at some point she will probably have to take chemotherapy, but wants to save it as long as possible. She is contemplating adding Avastin, but it is not actually recommended for the her2pos.
I am very upset that the FDA has ruled against the TDM1 for now. 2012 is a LONG time when you have cancer.

Thanks much Debbie. I appreciate your response.
Ev
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Old 10-20-2010, 04:47 PM   #4
DeenaH
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Re: Neratinib clinical trials.

I am considering the trial for Naratinib in SF, but I don't know the details about that trial yet. I meet with the Dr. running the trial on November 5th, and can report back with info if that location is anywhere near you. Good luck!
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Old 10-21-2010, 11:22 AM   #5
evlin75
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Re: Neratinib clinical trials.

Thank you! yes I would appreciate what you find out. Good luck to you in the trial if you get into it.

My daughter's oncologist has added Avastin starting today. Susan wants to try it before they decide to cut approval for it for breast cancer.Maybe three months will be all she gets. They are going to hold off the decision until December 17th.
Thanks very much. I'd sure appreciate the information about the neratinib trial.
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Old 10-22-2010, 03:30 PM   #6
Joan M
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Re: Neratinib clinical trials.

Can the lymph node be removed? I would speak to a thoracic surgeon directly and not rely on your daughter's oncologist's take on it. The treatment is a little unconventional, and many oncologist shy away from alternative treatments.

I've done several local treatments and have avoided chemotherapy since being diagnosed metastatic in January 2007. I take only Herceptin. But of course I never know when the cancer is going to pop up again.

Please keep us updated.

Joan
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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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Old 03-01-2013, 09:02 PM   #7
A. L. Pendley
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Re: Neratinib clinical trials.

I'm glad there's at least some talk of Naratinib. I too am checking it out since I hear it can cross the blood brain barrier. And I just got approved for T-DM1. At least I have a choice now (maybe) when before I didn't think there was one! Lets keep talking!
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