EGFR exon 19 mutation

[Beepers7]

Hello Friends,

I posted several times since diagnosis in September 2019. After two six day cycles of chemotherapy and 30 radiation treatments in December and January, I opted for lobectomy March 27. The surgeon could not complete lobectomy because my heart stressed so performed wedge resection. Clear margins on tumor and negative on one lymph node. I was staged 3A in September.

6 weeks post surgery and doing fairly well. I’m scheduled for adjuvant chemo beginning this Tuesday. 2 three day rounds.

I just today received mutation test which I requested after watching GO2 meetings. It came back EGFR exon 19 with PDL1 at 25%. They say I might be candidate for clinical trail.

Anyone have any information or advice? Thank you in advance. SteveO

[Denzie Moderator Volunteer]

I’m alive today because somebody somewhen participated in clinical trials. I can’t thank them but I can thank you for even considering it. Clinical trials saves lives. Period. My oncologist knows that I want to do one in the event of progression.

Please let us know what you decide, Steve, and if you do a trial which one it is.

Best hopes.

[Beepers7 in reply to Denzie]

Denzie,

Thanks for responding and your encouragement. I will keep you informed going forward. Without this forum I would not be where I’m today. The information, advise and encouragement are overwhelming. Best to you going forward

💕🙏 SteveO

[rdflynnjr]

Hi Steve,

Good to know that you have options. My PDL1 is only 5% so that is probably why the immunotherapy didn't work. Also, I have no actionable

mutation. I will be starting chemo with carboplatin and something else maybe, to be determined. Will happen within the next two weeks. And I will be talking to the radiation folks too about irradiating the bone mets.

Wishing you the best with your decisions.

Rick

[Beepers7 in reply to rdflynnjr]

Thanks For responding Rick. Think of you often. You’re a warrior as I am, along with all the others on this forum. Fight on! 🙏🇺🇸 SteveO

[PegD]

Hi SteveO,

First, congratulations on being your own best advocate and requesting NGS testing! Knowing what is driving our cancer gives us better informed treatment options.

I’d be interested in knowing what clinical trials are in the mix for EGFR Exon 19 combined w/ immunotherapy (PDL1 significance) if that is what you are referring to.

Preferred first line treatment for EGFR Exon 19 is typically Tagrisso, an EGFR TKI which if you haven’t had previous immunotherapy, i.e., Keytruda, Opdivo, etc., is a great option. If one had received one of these immunotherapy drugs prior to Tagrisso, there is an added risk of pneumonitis, hence my interest in which clinical trials are in the pipeline.

For reference: medscape.com/viewarticle/91...

I am currently in a clinical trial for an EGFR/ERBB fusion inhibitor. Qualifying for a clinical trial gives added hope not only for ourselves, but for others.

Wishing you all the best and please keep us posted.

[Beepers7]

PegD,

Thanks for responding and the information, much appreciated. I will keep you posted on my decisions and treatments. Wishing you the best in your trial. Keep the Faith as you battle on😊🙏

[Miranda_GO2 Partner]

Hi SteveO,

Thanks for sharing. I'll be thinking of you as you start your new cycle of chemo tomorrow.

I'm happy to read that you asked for your NGS test results after watching a GO2 Living Room, more information and understanding is key to patient empowerment.

I'm not sure which trial your doctor is recommending, is it the ALCHEMIST trial? Either way, you might find it helpful to speak to someone from GO2's LungMATCH team about navigating clinical trial options. They are a great resource for information. If you want to email them your questions, feel free to reach out to them at [e-mail]

Here is the website to learn more about LungMATCH: go2foundation.org/resources...

Please let me know if you have any questions. You can also reach out to us to connect with LungMATCH on our Helpline 1-800-298-2436.

Sending you all my best!

[Beepers7 in reply to Miranda_GO2]

Thank you Miranda for responding. Being stage 3a and having a wedge section to remove tumor recently (6 weeks ago)my oncologist is recommending two cycles chemo adjuvant therapy. Hoping and praying that this final treatment of chemo puts me in the clear for a while. If cancer returns on future scans I guess we can investigate trails or Targeted therapy. Again thanks for you concern and information. GBY SteveO

[Miranda_GO2 Partner in reply to Beepers7]

Absolutely, SteveO.

Just as a side note to elaborate on my initial comment, the ALCHEMIST trial is only for stage IB-IIIA who have completed surgery and chemo/ chemoradiation. The trial is looking to see if treatments such as targeted therapy or immunotherapy after standard of care can reduce chances of the cancer returning. This was the trial that popped into my head when you mentioned your doctor talked to you about a trial. If you want more information about this trial or others, feel free to reach out. Either way, we are here if you have questions.

Here is the website for the ALCHEMIST trial: cancer.gov/types/lung/resea...

[Abby76 in reply to Beepers7]

I had stage 3a and a lobe removed. Had to do neoadjuvant 1st to shrink tumor to operate. Clear margins were found after operation, no lymph node involvement but had adjuvant therapy afterwards. My cancer was squamous cell carcinoma

[Beepers7]

Miranda,

Again thanks for the information on the ALCHEMIST trial. As I mentioned I will begin 2 cycles of chemo starting tomorrow morning. Those will be adjuvant therapy my oncologist is recommending after my wedge section 6 weeks prior.

I am very interested in the trial and possibly seeing if I’m a candidate after this next round of chemo.

Of course all these treatments are new to me so making decisions as I go. I would not have received surgery or the mutation test if I hadn’t educated myself with your organization’s help and pushed a bit. As you know these treatment plans work differently for each of us. I just hope and pray about each decision, then let go.

This forum and dedicated people such as you can’t be thanked enough. Have a wonderful day😊 SteveO