Jump to content

HER-2 mutation


Dyan721

Recommended Posts

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

 

Link to comment
Share on other sites

  • 1 month later...
  • 5 months later...

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.

Link to comment
Share on other sites

  • 1 month later...

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 😋

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

  • 2 months later...
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.

Link to comment
Share on other sites

  • 2 months later...

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.

 

Link to comment
Share on other sites

  • 2 weeks later...
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

Link to comment
Share on other sites

  • 1 year later...

Just saw these postings!  I have HER2 amplification. So far immunotherapy was a bust. Just finished 4 rounds of Carboplatin and Alimta. Now Alimta only for maintenance. But one tumor is growing slightly. So another scan in 6 weeks then a decision if still growing. My oncologist is holding Kadcyla for later. It’s been a long 9 months and still I have no shrinkage!  At some point I hope we find something that really works

Link to comment
Share on other sites

  • 1 month later...

Started my targeted therapy. Kadcyla. Anyone else on this?  One 90 minute infusion and second one will be next week. So far feeling no better. Still coughing, short of breath and fatigue. Can only hope it’s working!

Im reaching out to others with HER2 for some positive news!  

Link to comment
Share on other sites

Started my targeted therapy. Kadcyla. Anyone else on this?  One 90 minute infusion and second one will be next week. So far feeling no better. Still coughing, short of breath and fatigue. Can only hope it’s working!

Im reaching out to others with HER2 for some positive news!  

Link to comment
Share on other sites

Next week will be second infusion on Kadcyla. Ok with some fatigue and fractured rib from coughing. Coughing seems reduced. Now I’m finding the dry mouth and mouth sores much worse than previous treatments.  My previous solutions are not effective!  Will certainly talk to my team but just wondering if anyone else has experience with this med?

Link to comment
Share on other sites

  • 2 months later...

Marie. Thanks so much for the info. I’m going to talk to my oncologist at some point about this. Right now if Kadcyla is working my P.A. says hopefully you get a couple of years of stability. Ride the Wave!
But always good to know there is other options 

Link to comment
Share on other sites

  • 1 month later...

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.