EGFR Exon 19 Mutation - the Return (?)

@stephaniesun, I'm sorry you've been diagnosed with lung cancer. Fortunately, lung cancer has become more survivable over the last ten years as a result of more research funding.

It would be best if you asked an oncologist some of your questions. An advocacy site such as this one can only offer other's experiences. I'll address your questions as I can:

1. Expected? I'll provide the same thing an oncologist will likely tell you: Every body is different. Many factors influence a cancer's progression in a person and their response to treatment. Tagrisso will generally shrink existing tumors and eliminate single cells that haven't grown yet.

2. From my experience, 3 months is too early to make that determination. I've had suspicious results before, and the response was always, "We'll keep an eye on it." I expect you've already been scheduled for another scan in three months. I'll also share that my Oncologist expected at least three years of Tagrisso effectiveness before the cancer began to develop resistance.

3. Radiation is more invasive than targeted therapy like Tagrisso. Doctors will always choose the least invasive option available. Radiation not only kills the radiated cells, it produces long-term negative effects that are not entirely understood. I had radiation following surgery, and, in my mind, it was the last step of surgery.

4. Combining Tagrisso with platinum-based chemotherapy such as Carboplatin and Pemextered (Alimta) is the recommended first-line treatment for Stage 3A+ EGFR mutation. I've never heard of a recommendation for more chemo after that. You're right that chemo has negative side effects. Again, let your oncologist guide your treatments. He/she is the one with the years of education and practice.

As far as sleeping, have you tried a cup of coffee? I'm not being a smart-ass. Your body has been and is going through a lot. You can expect to feel differently than you did before. Being as young as you are is a double-edged sword. On the one hand, your body will be able to handle and recover from these treatments more easily than someone 30 or more years older. At the same time, you will be disappointed that your body isn't behaving and responding to challenges like it used to, especially if you have been physically active.

If you want more information, you can join the International Association for the Study of Lung Cancer (IASLC) at iaslc.org. It's the largest organization of oncologists, radiologists, nurses, etc., worldwide. I'm a member and will be attending their World Conference for Lung Cancer in a couple of weeks. Their website has a Lung Cancer 360 section that has a LOT of educational material.

Other great sources of information and support include Lungevity and GO2 for Lung Cancer.

Lung cancer is a journey filled with changes. Don't hesitate to talk with your oncologist about your feelings, concerns, and questions about progression and resistance. I called with questions so often that my oncologist's nurse and I were on a first-name basis and talked about each other's families and plans for the weekend!

Welcome to Mayo Connect @stephaniesun. It's obvious that you have educated yourself on your diagnosis in the past 8 months. You are ahead of many others in the same situation. Knowledge is power and can lead us to ask good questions of our doctors. I have a different mutation, ALK. I take a different targeted therapy. That's been my only treatment over the past four years, and I am stage IV.
It would be great to get your oncologist's opinion on these questions too. Try to remember that scans (CTs and PETs) are read by human radiologists, and usually not the same radiologist two times in a row. That can lead to some slight differences on the way tumor size and PET uptake are reported. Stable is great. You may continue to see a size reduction from just the Tagrisso, but it may take longer than 3 months. How often are you seeing your oncologist and having scans?

Thanks for this post, Matthew. What stage was your original diagnosis? Was gamma knife recommended for brain mets? Thanks.

@franciekid, I was diagnosed with Stage 2b NSCLC Adenocarcinoma EGFR Exon 19 mutation in June 2018, although the complete diagnosis wasn't available until after the surgery/biopsy.

In 2020, a head CAT scan revealed a 3.2 cm diameter cyst that wasn't supposed to be there. That's too big for medication or radiation, so "Get in there and take it out." was the only option. I was living in a different state than I'd been in during my original diagnosis and consulted with my first oncologist before deciding. He said something I never thought I'd hear, "Don't overthink it, Matthew, it's only brain surgery." The overthinking remark was made because he knew I was an engineer.

Thanks once again. While this 3mm bright spot on my cerebellum has not been definitively diagnosed as metastasis, I’m concerned that the Tagrisso I’ve been taking since July of 2023 has stopped working. We also reduced my dose for a while - several weeks - due to side effects and I can’t help but wonder if that was a mistake. At any rate, I appreciate both your attitude and your sense of humor. Your brain surgery hasn’t seemed to affect either.

@franciekid, yes, that's what we all pay attention to with Tagrisso. I reviewed a research paper where the researcher said, "TKI resistance is inevitable." as part of his pitch for the proposed research. Unfortunately, no one can tell when the cancer will develop resistance.

I have one friend who has been on it for 7 years. Like me, he's had one recurrence that was treated with radiation and no further recurrence since then. In my case, my radiologist speculated that maybe the initial surgery and radiation missed a few cells that took 4 years to grow into something detectable because I was taking Tagrisso all that time. My oncologist ordered another ctDNA after the radiation and is convinced that I experienced a recurrence and not resistance.

I did learn two things about Tagrisso after I'd been taking it:
1. Some people can skip a day or two on a weekend without a problem. My oncologist has decided that I am not one of those people after I had the recurrence. I haven't missed a day since.
2. Beyond that, it's essential for some of us to take it at the same time every day to maintain a constant level in the bloodstream. Once you say it, it seems obvious, but that was not part of my early instructions.

Yes, the thinking/reasoning/humor part of my brain is intact. The cyst was near the left parietal lobe, which influences muscles on the right side of my body and coordination between the two sides. I used to be much more athletic than I am now, which is frustrating, but in the grand scheme of things . . . Here's hoping that none of us on Tagrisso experience resistance any time soon!

Thanks so much for the encouragement. Back on full dose of Tagrisso. Not sure at this point if it would shrink brain met, if that’s what this is. I giess there is good success with gamma knife treatment.

I wasn't sure about the difference between CyberKnife and Gamma Knife and found a helpful webpage at https://www.vaidam.com/knowledge-center/cancer/key-differences-between-gamma-knife-and-cyberknife-treatment-procedure-side that lists the following differences and advantages of each. I had CyberKnife to my chest after my lobectomy. But my head was strapped down after the brain surgery and for this most recent treatment. That means I'm having radiation-induced complications after Gamma Knife.

Principle Differences:
Possibly the biggest difference between CyberKnife and Gamma Knife is that Gamma Knife requires a large metal frame to be mounted onto the patient’s head with screws before and during treatment. On the other hand, CyberKnife is a non-invasive and pain-free procedure that allows patients to lie comfortably on a treatment couch while the robotic arm delivers high doses of radiation around the patient.

As CyberKnife is an entirely non-invasive procedure, it requires no general or local anesthesia during the procedure. This is not the case with Gamma Knife.

CyberKnife has the ability to approach a tumour in various parts of the body from over 1,300 positions with pinpoint sub-millimetre accuracy. Gamma Knife on the other hand is limited to the brain and cervical spinal and can approach from a limited of 190 positions.

Gamma Knife has the ability to target a tumor with a single treatment of high-dose radiation. On the other hand, Cyberknife can treat a tumor with up to five low doses of radiation. Clinical trials have shown that lower doses of radiation have fewer after-effects on nearby organs and healthy tissues.

Advantages of Gamma Knife
Due to the advanced nature of CyberKnife treatment, it is generally perceived to be the better of the two procedures; nonetheless, there are a significant number of benefits that Gamma Knife has over CyberKnife that are worth considering.

Without a doubt the biggest benefit for patients is the reduced possibility of radiation induced complications. Gamma Knife can boast up to 100x less radiation to the body than Cyberknife.

Another advantage of Gamma Knife is the radiologic accuracy by means of targeted beams which are lower than 0.3mm (lower is better). On the other hand, CyberKnife has a Radiologic accuracy of about 1mm, which results in doses of radiation outside the target area being almost 4-6x more than Gamma Knife.

Gamma Knife uses a rigid immobilizer to prevent head movement using a lightweight stereotactic head frame fixed to the outer skull. This frame prevents movement during the procedure and provides exact MR and CT correlation from planning to treatment delivery in 3D.

Lastly, the Gamma Knife treatment takes all but one day. Unlike Cyberknife, where patient may be called for multiple treatments, possibly over a period of days.

Advantages of CyberKnife
By contrast, the CyberKnife system is a newer technology than Gamma Knife. It employs the help of an extremely precise monitoring system which updates the position of the body in real time allowing the CyberKnife robotics to accurately compensate for normal patient movement. Let’s look at a few benefits of CyberKnife that are worth assessing.

The biggest advantage of CyberKnife is that it is very patient-friendly. It does away with awkward head frames or any other kind of body movement restrictors and employs precise monitoring systems to update the position of the body in real time allowing it to accurately compensate for normal patient movement.

CyberKnife treatment offers greater flexibility in eliminating cancerous cells. The treatment plan, along with all imaging and scans, is completed days before any actual treatment begins. After the scans, the radiation oncologist develops a customized plan of treatment. Much like Gamma Knife, CyberKnife can be administered by a single, high dose of radiation, however, it leaves more options in planning radiation therapy sessions.

CyberKnife has pinpoint precision much like Gamma Knife; however, it can treat tumours from virtually any angle, pain-free and non-invasively. Where Gamma Knife is only limited to 190 positions, CyberKnife on the other hand can approach a tumour from over 1,300 positions.

Thank you for sharing your experiences. I have adenocarcinoma EGFR g12c with KRAS mutation. I'd not heard of the mutation until last month. I had middle lobe in rl removed in 2018 and top lobe rl last Oct. It seems TKI s are not very successful in my case. I have another nodule in my lrl that they are monitoring. I'm learning more about TKI s because of feedback to your post, again thanks

Gamma knife doesn’t always require the metal frame. My neurosurgeon anticipates using a mask that is created especially for each patient and attaches to the treatment table. Not the best situation for someone as claustrophobic as I, but with Xanax or another mild sedative, the procedure seems manageable.