Judy M2

Glad you were spared! Whew. The only home test I'd really trust is the Cue PCR system, which is pricey but accurate. My stepson uses it and in fact he recently (predictably) had Covid after a trip out of state. His Cue test showed positive the first try. His husband (a kidney cancer survivor) went to stay with friends for the duration. Hope your wife is feeling back to normal.

Hi Sally and welcome. I had a severe case of esophagitis that started 2 weeks into a 6-week course of radiation. The mistake I made was not getting a palliative care specialist on my team before treatments started. I just didn't know any better. My radiation oncologist was sympathetic but unhelpful. I can't tolerate oxycodone or morphine. My wonderful palliative care doctor prescribed methadone for the pain, which helped tremendously. After I went on a targeted therapy, I was switched to a Fentanyl patch. My esophagitis took 5 months to heal and then I was discharged from palliative care. (During the time I had esophagitis I had acid reflux as well.) For swallowing difficulties, there are swallowing therapists who should be able to help. The foods you can tolerate might change from hour to hour. It's best to stay with soft, non-acidic foods. Many people only have esophagitis for a few weeks. I'm happy to report that mine healed completely, as confirmed by an upper GI endoscopy. I was diagnosed with Stage 3b EGFR+ adenocarcinoma in October 2019. I had 6x chemo (carboplatin and taxol), 30x radiation and am now on a targeted therapy. I have been through the absolute worst but am grateful to be cancer-free 3 years after diagnosis. My best advice is to get pain management from a palliative care doctor and also see a swallowing therapist. I hope your side effects heal quickly.

Hi Julie, I think I read your cross post on Facebook and I was one of the commenters. Tagrisso as adjuvant therapy after surgery for early stages is relatively recent. In my comment I suggested you seek a second opinion with an EGFR specialist. I was inoperable Stage 3b, so I had chemo and radiation first. For me, the side effects of Tagrisso are minor and manageable. Keep getting those regular scans!

I didn't have much nausea from chemo (6x carbo and taxol), but my hair and eyelashes did fall out. There are cold caps that can prevent hair loss if it's a concern. I don't recall if your mom has had a new biopsy (tissue or liquid) and biomarker testing. If she hasn't, it would be worth pressing for. I recommend getting supportive/palliative on the team before chemo starts. They are very helpful in managing side effects.

Great news, Kamoto!

I was on a keto/low-carb diet for most of 2019, until I was diagnosed. It wasn't that difficult because there are lots of options these days. I still have to watch carbs to keep my A1C in check. Fasting 6 hours before a PET scan is standard, along with the no carb rule and no strenuous exercise. I alway schedule my PET scans first thing so I can get some coffee right after. Good luck, Kamoto!

Kamoto doesn't have to fast but does have to avoid carbohydrates for 24 hours beforehand. I always treat myself to a steak for dinner the night before a PET scan. Good luck, Kamoto!

Runny nose and post-nasal drip are indeed allergies. Tagrisso has given me nasal allergies that I take a Claritin for every day. @cbert, ask your doctors if you can take Claritin.

I haven't had lung surgery but did have major abdominal surgery, which took me 6 months to recover from. Have you seen your primary care doctor for bloodwork? I would check iron, B12 and electrolytes at a minimum. I was low in all of those at one point. Have you tried melatonin for sleep? I took that when I had trouble sleeping, but my oncologist had also given me a prescription for lorazepam in my chemo package. I no longer need a sleep aid. Bottom line is that walking helped me recover, a little longer every day, and many days I had to push through. Best of luck to you.

Yes, PDL-1 at 40% is very good. But her pulmonologist is right that it's not a good idea to start immunotherapy before the other biomarker results are in. I hope they are testing for all other actionable mutations besides EGFR.

I had pneumonitis for about a year after chest radiation. For me it wasn't painful, it did not need treatment and resolved on its own. But I know that people get their pneumonitis treated with steroids. Are you seeing a pulmonologist?

I have thought that air pollution was the cause of lung cancer in nonsmokers, and it seems that science is now confirming that. https://www.bbc.com/news/health-62797777

Hi Rosie, I am in San Diego too! I was also diagnosed at Stage 3 (3b to be precise), in October 2019. Who is your oncologist? I go to cCare in 4S Ranch and San Marcos, and my wonderful oncologist is Dr. Steven Eisenberg. You don't say whether your biomarker testing revealed any genetic testing. I have an EGFR mutation that has caused my lung cancer. I've been through chemo and radiation and then started on a targeted therapy pill in March 2020. I have No Evidence of Disease and am coming up on my 3rd cancerversary. When I went through chemo, part of the infusion process was a nice dose of IV Benadryl. I got nice naps out of that, and it was the best part of chemo day. Research is giving us lots of options and hope these days for living with lung cancer. Hang on to that hope and learn as much as you can about our disease.

Hi Susan, you've come to the right place. I'm one of a number of members who have had chemo, as well as radiation, before starting on Tagrisso. I've been on that for 30 months now with few side effects, have No Evidence of Disease and am coming up on my 3-year cancerversary. Like you, I'm fortunate to have a very empathetic oncologist. It really matters to me that he is so caring and understanding. Welcome to the group!

This is a very good podcast about EGFR+ lung cancer featuring the always great Dr. David Carbone, courtesy of the Lung Cancer Foundation of America. https://m.youtube.com/watch?v=M4kIBpqWRC0&feature=youtu.be

This article discusses a new use for liquid biopsies found during the INSIGHT study. This could help determine how well immunotherapy alone might work for certain tumors, regardless of PD-L1 expression. https://www.targetedonc.com/view/liquid-biopsy-hic-proteomic-testing-may-aid-in-nsclc-treatment-decision-making

I am Stage 3b EGFR Exon 19 deletion, and immunotherapy was not considered once my biomarker testing came back. I still don't understand her treatment plan and would seek a second opinion.

I just had a mammogram and they asked me to come back for a diagnostic mammogram. I haven't had it done yet but sent them the images of this month's PET/CT scan to see if that would clarify their concern. I need to follow up with them. My oncologist told me if anything of concern comes back to come right in and we'll talk. I've had a 6 mm nodule in my RUL for a long time now, and it's just been watched. It wasn't even called out on my last scan. Let's hope your wife's turns out to be this type of thing.

The waiting is excruciating. You want to get going with treatment, but you absolutely have to wait for the biomarker test results to get the right treatment plan. You can certainly take this time for a second opinion but ultimately you need to know your biomarker (if any). Your second opinion will--or should--tell you this. It's very important to feel like you're a partner on your care team, it gives you a feeling of control where you have none now. You can eventually drive the bus once you get all the facts and a little knowledge. Your diagnosis isn't quite complete yet, so hang in there. Cancer does change us, but how is up to you. I learned to have a lot of patience. While I was in treatment, I tried to stay away from conflict and annoyances, and today I still try to avoid negativity and worry. Not easy but it works for me.

Mutations can change, and new biomarker testing is now routinely done when progression occurs. I hope you'll get a second opinion, even a virtual one.

Everyone has give good advice. Has your mom had a new biopsy done (tissue or blood) to determine if a mutation is causing this progression? I would want to explore that as well as any clinical trials if your mom was agreeable. Hospital doctors refer people to hospice too quickly in my opinion.

Hi Chazprincess, when I was diagnosed almost 3 years ago, the most puzzling yet valuable information my primary care doctor gave me was that lung cancer isn't an automatic death sentence anymore. Like Michelle and Lou, I am also NED after having chemo and radiation and now on a daily targeted therapy pill. Taking one hour or one day at a time as Michelle suggests is essential to get through this difficult time. You are not alone, and we will be here to support you throughout.

I second everyone's suggestion for a second opinion. What concerns me is that they're considering immunotherapy before your biomarker test results are back. Immunotherapy may or may not be the right treatment. I've heard patients complain of feeling like they're just a number in some large cancer centers. You need to feel like you're being heard, all your questions are answered and that your team cares about you. It really will make a difference to your frame of mind.

I had the same experience as Tom, but after 7 months on Tagrisso I developed an annoying dry cough. It turned out to be nasal allergies/post-nasal drip caused by Tag, so I take Claritin daily. I wonder whether your mom's cough could be caused by acid reflux. I also had that during and after chest radiation for a while.

Hi Laurel, I was diagnosed in October 2019 with Stage 3b NSCLC that had also spread to my lymph nodes. Had 6x of chemo (carboplatin and taxol) and 30x of chest radiation. The chemo wasn't so terrible. I did lose my hair--and my eyelashes several times. I bought some cute headcovers online. I also had constipation, which is a common side effect. I think it took about a year for my hair to grow back, and it's a different texture now, probably due to the targeted therapy I take. Radiation was rough for me because I developed a painful case of esophagitis that took 5 months to heal. I don't know what side effects radiation to your neck might cause, so that's a good question for your radiation oncologist. My best advice is to get a supportive/palliative care specialist on your team before you start treatment in case you have side effects that can impact your quality of life. I was late in getting my palliative care doctor, and really regret that no one on my care team suggested it. When I had my bronchoscopy, my pulmonologist sent a tissue sample out for biomarker testing, and it was determined that I had an EGFR mutation that was causing my cancer. Since March 2020, I've been on a targeted therapy pill and now have No Evidence of Disease (NED). Did you also have biomarker testing done? As a, practical matter, chemo infusions are usually boring. I suggest you get a port to save your veins. Bring a blanket, a beverage, snack, earbuds, a book and phone/tablet. You might be able to nap like I did after the IV Benadryl hit. Your medical oncologist should give you a chemo education session prior to the start of treatment. Hope all goes well.