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EGFR Exon 19 Mutation - the Return (?)
A comment rather than a question. With zero family history, I was diagnosed with nonsmokers lung cancer in 2018. It metastasized to my brain in 2020. And it has been well-controlled by my daily Tagrisso since then. Until a month ago when my 'every 3-month' brain MRI showed increased activity at the resection site (the place where they removed the tumor in my brain.) A follow-up MRI with perfusion showed blood flow in the area, and a biomarker test showed twice the level in my bloodstream as last July. My Oncologist and Radiologist decided that one more dose of radiation should kill the new cells, and that's what we (they) did.
The question is, "Why this new activity?" One possibility is that I do occasionally miss my Tagrisso on weekends when working on the property. My Oncologist told me that skipping an occasional weekend altogether was OK. Now, he's decided that I'm an exception to that rule, and my wife helps me ensure that I never miss another dose! So, maybe that was it. OR, the Tagrisso isn't working as well as it used to. That's problematic because there currently isn't a backup plan. While the FLAURA4 trial did show positive results in combining chemo with Tagrisso, my Oncologist is skeptical because chemo doesn't cross the blood/brain barrier. The plan is to check my biomarker level and get another brain MRI in 3 months.
My spirit's OK because I've found a renewed sense of purpose in advocacy. This group is fantastic. When I was first diagnosed and didn't feel my doctors were telling me what to expect after chemo and radiation, I got valuable advice from this group.
Now, I want to share that there are even more groups, starting with GO2 for Lung Cancer, go2.org. Membership is free for survivors, caregivers, and advocates. Many of us deal with the mental and emotional side of our diagnoses and treatments. Personally, I feel better after volunteering for the call line, where newly diagnosed patients can call me and talk to someone who has been through the fire.
They (we) also have a monthly "Gathering Hope" session on Zoom or YouTube Live where you can interact with fellow survivors and medical personnel. The next one is tomorrow (3/12/2024) night.
Hang in there, everyone. Over 160 of us went to our legislators on Capitol Hill last Tuesday to lobby for additional lung cancer research funding. Together, we can all get through this.
Sheesh, I sound like some kind of ad!
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@flusshund, Matthew, Thank you for sharing this news. We know that drug resistance is lurking over our shoulder, ready to show up at some point. We look perfectly healthy and are fortunate to be able to live fairly normal lives on the outside. Friends, coworkers, and even family think we're cured, but we live with this constant weight of recurrence, and sometimes fear. We need the research to stay head of our progression, our lives literally depend on it! Your work helps all of us!
I'm hopeful that taking your dose on a more consistent basis is helpful to push more of the drug to the brain. With Tagrisso and brain progression, do they ever increase the dose? That is a proven success method with ALK and alectinib, although many people aren't able to increase dosage due to side effects too.
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2 Reactions@flusshund how did you get involved with advocacy? I’d like to learn more.
@dragonspark, I started here. 🙂 My next step came from giving presentations at work, which led me to our local cancer institute's director of patient support and pre-screening. She told me about GO2 for Lung Cancer, go2.org, which advocates for more lung cancer research funding. They have an annual "Voices Summit" in Washington, D.C., in early March. They offer scholarships (transportation and funding) for patients who are attending for the first time. They started accepting applications in late November last year. My wife and I and another survivor from our state went to our Senate and House representatives and advocated for more lung cancer research funding. I'm still following up with my state representatives.
Through the GO2 Summit, I learned about the Congressionally Directed Medical Research Program (CDMRP) Lung Cancer Research Program (LCRP) and its desire for civilian reviewers. That work consists of reviewing research proposals to provide the patient/caregiver/community perspective on potential impact. The papers are very technical. I have to look up some of the medical terms, but they use the same statistics we engineers use.
At the Summit, I also learned about the International Association for the Study of Lung Cancer (IASLC), which is an international group of oncologists, radiologists, and other lung cancer specialists. As a cancer survivor, you can join for free. I applied to and was accepted into their Supportive Training for Advocates on Research and Science, Patient Research Advocates (STARS PRA) program. I'm still going through the five months of training that it takes to become a PRA. The advantage is that when drug companies want to hear the patient's perspective, they come to groups like the PRAs to see if anyone is interested. Being a research advocate for pharmaceutical companies is all about networking.
The IASLC is hosting the World Congress for Lung Cancer next month in San Diego. Registration, either virtual or in-person, is free for patients. It's also their 50th anniversary. As an international organization, the WCLC rotates between North America, South America, Europe, and Asia, so it won't be back in this country for another 4 years. This Congress, and the annual ASCO meeting, which I missed this year, are great networking opportunities.
I've also joined the American Society for Clinical Oncology (ASCO), though I haven't done anything with them yet. I've filled out a form for the American Lung Association for advocacy with them, but they haven't followed up, and I haven't had time! I know someone who also works with Lungevity, which is a great source of lung cancer information.
Those leads should keep you busy for a while! Once you get started, you'll run into the same people who get to know you, and word spreads. The important thing to remember is that lung cancer doctors, researchers, and companies WANT to hear from patients, caregivers, and communities. I've made this a long reply in case anybody else is interested in getting involved. We need to make sure our voices are heard!
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1 ReactionThank you for the info.
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1 Reaction@flusshund this is great information! Thank you so much for this!!!
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1 ReactionCould you tell me what stage you were diagnosed at in 2018?
@lls8000, Lisa, I think I once asked my Oncologist about increasing the dose. He indicated there would be no benefit, but that may have been years ago. I'll ask him when I see him on the 30th. But I've never read that either. I'll be going to the World Congress next month, so I bet I'll have lots of opportunities to ask!
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1 Reaction@doulacheri, welcome to Mayo Connect. I'm glad that you've already found a helpful post.
Have you or a loved one been diagnosed with EGFR positive lung cancer?
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!
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1 ReactionAlso, I'm having a lot of trouble sleeping, waking up before daylight and am feeling tired all day. Any suggestions?