New Here, Mom is Exon 20

[Gingy22]

Hi all,

Long time lurker, first time poster. I hate having to be here, but am so glad this group exists. My beautiful 66yo mom was diagnosed with Stage IV nsclc this May. Like everyone else here, our hearts were broken and we were terrified.

Since then I feel like I’ve read a gazillion medical research papers, understanding a tiny bit more with each one as I’ve gone from 0 to 60 in learning about lung cancer. But far more useful to me has been reading through posts and profiles here since the diagnosis. Seeing others start out in the same place (scared), making progress and celebrating stable scans and even NED has given me so much hope!

A little about my mom’s case- she’s EGFR Exon 20 s768i/v769l. Point mutations, rather than insertions. A rarer mutation, it’s resistant to immunotherapy and it’s not super clear how effective TKIs like Afatinib or Tag would be (I understand they are generally not as effective as with classical mutations.) She started treatment with 10 rounds of EBRT to shrink her primary tumor, to allow pneumonia to clear up. In July she started her first line Amivantamab, along with Carboplatin and Pemetrexed. She has one more round of Carbo and I believe she’ll continue with Pemetrexed plus Ami infusions every 3 weeks. Her side effects have been relatively mild. (She still has her hair- yay!) She has a single met to her adrenal gland, along with 2 lymph nodes. 
 

I have a two year old and it’s been hard for me to attend appointments, so I’ve heard everything second hand through my parents until today when I made it in to meet her oncologist. I’ve become the family’s resident “researcher,” aka the only one brave enough to consult the internet for cancer news. I told my parents to stay away from Dr Google. Personally I like knowing as much as I can about her condition but I totally get staying away from scary online info. 
 

I’ve wanted to post for awhile, but wanted to at least see her doctor and get my ducks in a row first. I look forward to meeting the great people here (and not just lurking)!

[LouT]

Hi Gingy,

Sorry to hear about your Mom’s situation and glad to hear that her treatment is moving along pretty smoothly.  None of us ever plans for Lung Cancer and neither do our families.  Being a caregiver can be especially hard on folks as they are dealing with a disease who’s reputation is not good and in many cases it is diagnosed at a later stage as that is when symptoms usually show up.  Let me share a few things with you, some of which you may want to share with your mom.

1. Stay away from Dr. Google…the stats you’ll find there are 5-year averages that often do not include newer treatments and neither do they take into account individual cases (such as the mutations some of us have).
2. Please share this with your mom.  It is a blog written by one of our long-time survivors who was diagnosed with Stage 3 then 4 LC 20 years ago and 18 years later he was pronounced cured.  The blog is titles “10 Steps to Surviving Lung Cancer; from a Survivor” and it can be found here.
3. We have forums dedicated to some of the mutations and you may find folks with experience more in line with your mom’s.  That forum is EGFR.
4. We have a lot of information in formats that are easy to understand than much of what it on the web.  It can be found here.
5. Finally, as a caregiver the pressures on you are many, there is a section under the Caregiver’s Resource Center…find it here.

Feel free to ask any questions you’d like.  There are many survivors here with a vast range of experience to share.

Lou

[Gingy22]

Thanks, Lou. There’s a long road ahead of us and lots to learn. I appreciate all the resources. 😊

[edivebuddy]

I've heard good things about  amivantamab.  It's a bispecific that like immunotherapy and a TKI rolled into one. I hope your mother responds well. 

[Gingy22]

@edivebuddy Thanks! I’ve heard good things too. It was only approved as first line maybe a month or so before she started it and we’re very thankful. Her first scans since diagnosis are in 3 weeks and I’ll share the results. Gotta love that scanxiety!

[Livin Life]

Welcome, Gingy though sorry you have to be here.  You've received some great information above.....   So glad you finally posted though I get the need to check things out and learn first.  Just want to wish your mom and the rest of you the best with her scans in three weeks. 

[Karen_L]

Glad you're here!

I was diagnosed during Covid; my family attended meetings via Zoom. You may find it helpful to be a fly on the wall rather than a secondhand learner. 

One of my mutations is S768i. I also have a an Exon 21 mutation, L858R. They seem to carry a 50/50 influence (I forget the language.) I was diagnosed in February of 2021.

Immunology is not effective for any EGFR mutations. 

mycancergenome.org had information about mutations and treatments. The site seems hinky today-- my bookmarks aren't working. But check it out. 

The NCCN algorithms for NSCLC treatment protocols have been informative for me. 

FWIW, subcutaneous Ami takes less time than venous infusion and yields the same results. Not sure if that's an available protocol yet, or whether it is still in trials. It never hurts to ask. 

In a webinar once I asked a top researcher why we heard so little about S768i. He said he was sure somebody was researching it. I haven't done a deep dive into it. Yet. 😃

Please keep us posted.

 

 

 

[Gingy22]

@Livin Life Thanks! I’ll update with what the scans show. We’re hoping for some good news. 😊

 

@Karen_L Hi Karen, I love the zoom idea. I had to get up at an ungodly hour to make the trip up to the hospital, with a toddler…just to sit and I did ask one question. I am glad I met the doctor in person at least once. 
 

Thanks for the resources! I had the first one saved but not the NCCN. 
 

Mom’s two primary mutations are both uncommon Exon 20, and because that means less data, everything I've read on them basically says they need more data lol. I’m in contact with Marcia Horn and the Exon 20 Group- she’s great! And sent me some info on upcoming treatments that may work for mom. What I can relay about s768i is it’s a point mutation, categorized structurally as a PACC mutation…the details are above my pay grade but basically the structure makes it less effected by tkis. Here’s a link Marcia sent me if you want a scientific and much better explanation lol:

https://www.nature.com/articles/s41586-021-03898-1
 

Oh and the doctor mentioned as soon as subcutaneous Amivantamab is approved, mom will be transitioning over to it! It should be soon. (Did she mean regular soon, or cancer soon??) A 5 min shot instead of 8 hour infusion, that’ll be great!

 

[Karen_L]

Great article-- thanks!

Did Marcia mention the FaceBook Exon 20 group? When I spoke with her, she said the group was for Exon 20 insertion and deletion mutations, and since mine is a point mutation, I wasn't able to be a member. Has that changed for your mom? 

When I pushed for afatininb as a first line treatment, the doc was not interested. We went instead for the protocol following the Pacific Study results, presumably for the L858R mutation. Of course, the immunotherapy consolidation almost killed me (literally) but, whaddya gonna do?

[Gingy22]

I’m on the Exon 20 FB page. I don’t know if it’s because my mom doesn’t have an exon 19 or 21 mutation, or because I contacted her before knowing what specific exon 20 mutation it was- either way, I’m in! 

I was looking at afatinib as well, but it’s not on the shortlist of drugs Marcia sent me-

“We think this insertion will benefit from: amivantamab, ami plus chemo, ami plus lazertinib, zipalertinib, firmonertinib.”

The doctor has been tight lipped about what drugs we might go to next, I figure she doesn’t want to tell us one thing only to have to change later. Mom was originally slated for Keytruda until test results…thank goodness for genome tests. I’m glad immunotherapy didn’t kill you! Although it wasn’t your first choice, but Tag seems to be doing the trick for you- that’s so great!