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EGFR Exon 19 Mutation - the Return (?)
Lung Cancer | Last Active: Aug 29 4:22pm | Replies (12)Comment receiving replies
Hello! I am a 46-year-old Chinese American woman diagnosed with Stage IV Adenocarcinoma in January of 2024 with metastasis to brain and bone (non-smoker, no family history). I completed 4 cycles of chemo (Carboplatin/Alimta) February through April and have been taking Tagrisso. The May scans showed significant improvement, negative brain MRI and reduced activity all over. The August scans show stable condition but some areas are still lighting up on a PET scan, some better and some a little worse (lung and bones 2.5-4.0 SUV range) compared to the May scans. Radiation oncologist reviewed the images with me and suggested waiting longer to make radiation decisions because the SUV's weren't noticeably worse compared to the May scans.
My latest Guardant360 liquid biopsy shows 10.1% CFDNA of EGFR Exon 19 deletion and 1% CFDNA of CHEK2 W114. Tumor Mutational Burden is 0.95 mut/Mb and Tumor Fraction of 7.4%. I have been taking Tagrisso for 6 months. I think my doctor said he would expect EGFR to not be present because Tagrisso is treating it. However the report came back with 10.1% EGFR mutation. This means the cancer is active and Tagrisso isn't able to clear it. One lung cancer specialist recommended adding Alimta every 4 weeks. Another lung specialist suggested waiting till the next scans to confirm progression and irradiate active spots.
I have some questions for this group:
1. Is the expected condition after 6 months of chemo/Tagrisso a negative PET scan? If so, should we consider this to be a sign of progression?
2. Because my 6-month scans are not drastically better than my 3-month scans, is the benefit of Tagrisso maxed out meaning it can still maintain the status quo but not improving further.
3. Isn't it better to radiate the active areas early rather than waiting for it to become more active and possibly spreading to other areas?
4. Should I consider more chemo? There are so many side effects to chemo, and I'm really hesitant to start it again. I also worry that chemo will weaken my body overall. If we need to add an additional treatment, I'm leaning toward radiation to achieve better results than what 4 rounds of chemo didn't achieve.
Thank you so much!
Replies to "Hello! I am a 46-year-old Chinese American woman diagnosed with Stage IV Adenocarcinoma in January of..."
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?
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@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!