Judy M2

So sorry to hear this. I hope your brother improves quickly.

Great news, Claudia! Enjoy your trip and the holidays!

I just shared this with the EGFR Resisters Group on Facebook (I'm not in the Exon 20 group). A local oncologist recently presented the findings. One of the EGFR members is in this trial. In California it's available in San Diego, Irvine and Whittier. https://www.targetedonc.com/view/sunvozertinib-shows-activity-and-tolerability-in-egfr-exon-20-nsclc

Like Justin, I had terrible esophagitis after radiation. I couldn't eat or drink, and I couldn't get effective pain management for a while (long story). I basically lived on Ensure or Boost Soothe for a few months. I never knew what I could tolerate from minute to minute. People recommend smoothies but I can't stand them. You need a bland diet for now, and if all you can manage is ice cream, then so be it. My palliative care doctor helped me so much with pain management, but they do more than that by helping manage side effects. And THC can also help minimize some side effects too. When I was so sick, I was miserable and didn't think I could survive, but here I am almost 3 years later. Try to take things one day at a time, even one hour at a time. If your oncologist gave you a prescription for anti-anxiety meds, I recommend taking them. They're sort of standard for chemo patients. Hang in there.

GBJ, glad you've had a good scan! You're heading in a good direction. Your CEA is lower than mine (1.0) and I'm NED. Keep going!

Hi Christine, welcome to the family. It is so fortunate that your cancer was caught in the early stages. This forum has members diagnosed at all stages, and your voice is as important as those of us in later stages. I was diagnosed 3 years ago at inoperable Stage 3b, had chemo and radiation, am on a targeted therapy and am NED. Live your life and enjoy yourself. Don't let survivor's guilt get in your way.

Hi Robert. Has your oncologist suggested a new biopsy (tissue or liquid) for biomarker testing? Depending on the size of the nodules, will you be seeing a radiation oncologist in the meantime? I agree with Karen that another opinion would be wise.

I had pretty severe esophagitis from radiation and never considered Manuka honey. Methadone helped with my pain. My esophagitis took 5 months to resolve. Palliative care is the best course.

My oncologist threw the kitchen sink at my Stage IIIB adenocarcinoma: I had 6x chemo (carboplatin and taxol) and 30x radiation, like Tom, before starting targeted therapy for my EGFR-mutated NSCLC. Immunotherapy wasn't an option for me. I just had my 3-year cancerversary and am NED. Best wishes to your mom.

Looks good! Congrats!

According to drugs.com, there is a moderate risk of interaction. You'll want to ask your cardiologist about this. https://www.drugs.com/interactions-check.php?drug_list=4151-0,3438-16026

When we sold my childhood (and adult) home 8 years ago, a required radon test detected radon in the basement. No surprise, it was an older home in the Northeast. But I was the only person in the family who got lung cancer. Turns out that my EGFR+ lung cancer was presumably caused by post-9/11 toxic exposure. Like Karen said, you could drive yourself nuts trying to figure out the cause. The fact is that our DNA happened to get messed up, possibly by environmental causes. Don't blame yourself. In the last 3 years, I've let go of worry, regret and blaming myself. My cancer journey has not been easy but I actually consider myself very fortunate. By the way, here in the U.S., the American Lung Association endeavors to raise awareness of radon: https://www.lung.org/clean-air/at-home/indoor-air-pollutants/radon

The oncologists who present at LUNGevity conferences, as well as elsewhere, all say that in clinical trials we get tomorrow's treatments today. Both LUNGevity and GO2 Foundation have clinical trial navigators if you need that service. I'm glad your brother was able to get out and enjoy the game and also hope he can find an appropriate and effective clinical trial.

I've never had a brain MRI in the 3 years since my diagnosis, but I don't have brain mets (Stage 3b). I probably should have had one at the beginning.

MzShannon, it's really vital to wait until all test results are in so that your mom's doctor can create the appropriate treatment plan. You wouldn't want to start a treatment only to find it was the wrong one or unnecessary. There are so many treatment options these days. One thing cancer teaches us is how to wait. It's a hard lesson, to be sure.

I agree with Tom in general and also about getting her shots, and I would add the Prevnar (Pneumonia) shots to that list. My primary doctor gave me the first Pneumonia shot at the appointment when I was diagnosed (and I followed up with her for the second one). Your mother may also need to see a pulmonologist, so ask the new doctor for a referral.

I haven't had a thyroidectomy but I did have 6x chemo (carboplatin and taxol) and 30x radiation prior to starting targeted therapy in March 2020 for Stage IIIB EGFR+ adenocarcinoma. For me, radiation was the most difficult. Sorry I can't exactly answer your question.

Hopefully your mom's doctor will be able to do biomarker testing on the fluid. This unfortunately takes time but is worth the wait. Even late stage lung cancer can be treated with good results these days. Hang on there, try not to worry too much and stay away from Dr. Google. Please let us know how the testing turns out.

Thanks, Tom and Justin. I wanted to let folks know that there can be life after a diagnosis of lung cancer. Congratulations to your Phillies, Tom. After the Padres beat the Dodgers we were hoping for more, but sadly it was not to be.

@Minh, your comments are very interesting. A couple of years ago as a result of a mammogram, I needed to get a biopsy done. The radiologist told me it was just a precaution because what showed up was round, and he said "cancer isn't round". Sure enough, what I had was a benign cyst. I've had a 5 mm nodule in my upper right lung for a couple of years and lately it's not showing up on scans anymore. My oncologist had also adopted the wait-and-see approach with it. @DRock, I hope this turns out to be nothing of concern. Glad you'll be watched closely so if there is any change, they'll catch is quickly.

UPDATE 11/1/22: I got my results yesterday, still NED as I expected. I have now graduated to 4-month scans (previously every 3 months)! I've gotten to the point where I can tell which radiologist read my scans. Each one has a different writing style. For the first time, "a few" apical nodules in my right lung were called out, the largest being 6 mm. I was only aware of the large one, but these nodules are all stable and are not worrisome. ORIGINAL POST: Three years ago today my primary doctor told me that an Xray showed a 6 cm mass in my lower left lung. Lung cancer. You hear those words and your head starts spinning. But, she said, it's not a death sentence anymore. I knew nothing about lung cancer and really didn't believe her. I was referred to a pulmonologist, medical oncologist and radiation oncologist in quick succession. On Halloween 2019, my pulmonologist performed a rigid bronchoscopy to take tissue for biopsy and biomarker testing. The results were Stage IIIB NSC adenocarcinoma. It took time for the biomarker tests to come back in mid-November, and they showed an EGFR driver mutation. I still didn't know what that meant. November 2019 was a flurry of activity, seeing both oncologists, getting a port placed, getting dental work done and getting a bulk Teflon injection into my left vocal cord, which was paralyzed by the tumor. On December 3, 2019 I started the first of 6 weekly infusions of chemo (carboplatin and taxol) and 30 sessions of chest radiation. These treatments were not without side effects, and if I were to do it all again, I'd get a palliative care specialist on my team at the beginning. In March 2020 I started on Tagrisso for the EGFR mutation and have taken it daily since. My side effects are common and manageable. I never thought I'd make it this far but here I am 3 years later and NED. I found LUNGevity months after treatments ended, while I was still recovering. I wish I had found this wonderful community sooner, but better late than never. Coincidentally, I had my regular 3-month PET/CT scan this morning and will get results on Halloween. I don't expect there to be any changes. For anyone just diagnosed, I hope you'll learn as much as possible about this disease and all the modern treatments that are available. My doctor was right after all. I consider myself very fortunate that I have a great medical oncologist (even if he is a fan of the Phillies and Eagles) and the support of my husband, family and friends. I could not have made it this far without all of them and you!

I'm Stage IIIB, had 6x of carboplatin/taxol and 30x radiation before starting Tagrisso. I still cannot understand why your mom is getting immunotherapy, and I again urge a second opinion with an EGFR expert.

I ate a lot of ice cream and Trader Joe's macaroni and cheese because I had esophagitis from radiation when I was getting chemo. What I could tolerate changed from hour to hour, not because of taste but because of pain. She should eat whatever she can tolerate. I also strongly recommend a supportive/palliative care specialist for her quality of life issues. Of course, the decision to continue chemo is hers, but the palliative care doctor will be able to find out why she doesn't want to continue.

I'm so sorry for your loss. Thankfully she was not in pain at the end. My condolences to you and your family.

This clinical trial involves Stage IV patients who have been previously treated. https://www.targetedonc.com/view/fda-fast-tracks-sapanisertib-for-nrf2-mutated-squamous-lung-cancer