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Dyan721

HER-2 mutation

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I am wondering if there is anyone else on this forum who has a HER-2 lung cancer mutation? I guess it is pretty rare (1-4% incidence). HER-2 is much more common in breast cancer. 

Thanks, Dyan

 

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How is your dad doing? There are 2 clinical trials enrolling now for EGFR/Her2 Exon 20 mutations. I am probably going to do the 1st one. They are AP32788 and the Poziotinib trial only at MD Anderson. The 1st one has multiple sites. You can find them at clinicaltrials.gov. I have been surviving with stage IV lung cancer for 16 months now. It's not easy but you've got to keep on fighting.

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Hi Tracy, it’s great to meet another HER2 exon 20 person. We are a rare breed indeed (estimated 3,500 in the U.S). How is your treatment going? I have been in 😋

Edited by Dyan721
I cut off some of the message

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Sorry. I have been in the TAK-788 trial for 2 weeks. I joined the exon20group.org.  You might want to check it out and join too. Best of luck to you.

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On 9/13/2018 at 8:59 PM, Dyan721 said:

Sorry. I have been in the TAK-788 trial for 2 weeks. I joined the exon20group.org.  You might want to check it out and join too. Best of luck to you.

I hope you are doing well on this trial. My husband has been on it since June 2018.  So far stable scans, but no tumor shrinkage.

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I am so glad to find this forum. My dad has the exon 20 insertion and we have switched to Kadcyla. He took four rounds of carboplatin, pemetrexed and pembrolizumab. Although he showed improvement after 2 rounds, the cancer had spread after 4 rounds. Would love to know about people who are on Pyrotinib, Poziotinib and any other clinical drugs.

 

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On 9/13/2018 at 8:59 PM, Dyan721 said:

Sorry. I have been in the TAK-788 trial for 2 weeks. I joined the exon20group.org.  You might want to check it out and join too. Best of luck to you.

Hi, Dyan721,

Could you reach out to Tamara? Her best friend is starting the TAK-788 trial and would like to talk to someone else who has experience.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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