Does anyone have info on new treatments against EGFR exon 19 mutation?

Hello @nicolaidk and welcome to Mayo Clinic Connect. I was able to find another member with experience with this diagnosis so wanted to connect the pair of you. @flusshund, can you come in and share some of your experience? @lijda has also shared some knowledge of EGFR.

How long since your wife's diagnosis?

Hi, thank you for connecting me. My wife was diagnosed in September 2022.

Hi @nicolaidk, I see that you found another active EGFR discussion. That includes some valuable information. I'm hoping one of the other EGFR survivors may respond here too.
I'm an ALK patient, a different mutation, stage IV. I am still taking my first TKI and doing fairly well, but I'm always looking to 'what's next'. Hopefully your wife has a long run on the Tagrisso. It really helps me to deal with the uncertainty to know what happens when I inevitably experience progression. I'm an analytical person, and having a plan is important to me. Cancer patients and caregivers generally don't like surprises! I was diagnosed three years ago, and even over that time, the plan of 'what's next' has changed, mostly due to ever advancing research and new clinical trials. Many thanks to great scientists that are much much smarter than me!
There is an EGFR Facebook group that may be helpful, "EGFR Resisters Lung Cancer Patient Group". There is a comparable ALK group that has been valuable to me in learning about ALK, future treatments, and on-going clinical trials.

Hi Nicolaidk,

That's an easy question. Tagrisso IS the next-generation treatment!!! The FDA granted regular approval in 2017. In 2018, it was still so new that I had chemo and radiation after my upper right lobectomy. I didn't start taking Tagrisso until after it metastasized to my brain in 2020.

What's the reason that you're looking for something else? I won't say something better, because Tagrisso could be a cure, for all we know at this point.

Hi Matthew,
Thank you so much for answering me and hope you are doing ok, I think Tagrisso is absolutely great and my wife consider herself lucky to have the opportunity to get Tagrisso. I’m only checking if you or anyone else know if there will be a “Tagrisso 2.0” as I know there is a risk that at some point Tagrisso doesn’t work anymore and the cancer cells stop responding to the treatment after a while. So I’m just looking for a plan B in case this happens.
All the best,

Thank you Lisa - very kind of you to point me in the direction of EGFR Facebook group which I will definitely check out.
Wishing you all the very best.

I'm not the right kind of doctor (Ph.D. in Mathematics) to know what's in that pipeline. Our Oncologists would be the best source of that knowledge. Or maybe explore AstraZeneca's website.

I tried searching ClinicalTrials.gov for "non-small cell adenocarcinoma" with the other terms of "EGFR mutation" to see a list of the current clinical trials with their statuses. It's interesting reading with a lot of big words, but I don't know that any pharmacies are using this information to develop new treatments.

Thanks Matthew for your help. I brings comfort to connect with people that have the same EGFR mutation as my wife. We live in Copenhagen Denmark (used to live in the US) so also very interesting to learn that treatments and progress are very similar to what I can read you are going through. Thank you also for sharing in another chat that vitamin E oil is good for split nails which my wife will start using. Please let me know if there is anything I can do for you.
Best,
Nicolai

Any ‘plan B’ will depend on the way in which a cancer becomes resistant to Tagrisso (osimertinib). The following provides a general overview of “Trends in Treatment of EGFR+ NSCLC after Progression Following Tagrisso Treatment”:
https://go2.org/blog/trends-in-treatment-of-egfr-nsclc-after-progression-following-tagrisso-treatment/#:~:text=Since%20IMpower150%2C%20some%20doctors%20may,have%20progression%20after%20receiving%20Tagrisso

For a more detailed understanding, an organization called EGFR Resisters has an excellent webinair series on the different ways in which EGFR-positive cancer becomes resistant to targeted treatment. The various means of resistance can be divided into three categories and there is a video on each of those categories; see the following for links to the videos: https://egfrcancer.org/ask-the-egfr-experts/#videos Each video also provides an overview (following an introduction: be patient!) and each overview is helpful even though they are slightly different (it helps to hear about this more than once!).

The videos are around 45 minutes each but I certainly found them worth my time. There is also a link to fact sheets. I recommend signing up for the newsletter from EGFR resisters, which will let you know about advances and new education material; you’ll get the chance to sign up from their home page https://egfrcancer.org

I hope this helps. At this point, it really makes sense to achieve a general understanding because you won’t know what kind of treatment is next until you know what kind of resistance is encountered. I hope that Tagrisso will remain effective for your wife for a very long time, at which point there will undoubtedly be many new possibilities for treating resistance.

Great info. Thank you.