Judy M2

Yes, radiation is rough when it hits your esophagus. My esophagitis started about 2 weeks into the 30x (5 week) radiation schedule. Mine was severe and took 5 months to heal. Hopefully yours won't be that bad! I do recommend a palliative care doctor to help with the inevitable pain. Some people see swallowing/speech therapists with good results. I had the same chemo combo as you. I didn't think it was too terrible. Imfinzi (immunotherapy) wasn't a treatment option for me due to my EGFR Exon 19 deletion biomarker. I started on Tagrisso after chemo and radiation were completed and have now been on it for 27 months. NED since April 2021. Watch out for dehydration if you're having trouble swallowing. You can get hydration at your chemo center if necessary. I went 3x a week for a couple of months. I hope you get through treatments without too much discomfort. It does get better with time.

Jill, one thing I found very helpful during treatments was a Caring Bridge site. Just one place where you can inform people about how you're doing. It takes a little effort to set up but once that's done, updates are easy. I haven't had anything to write about in more than a year now because I'm back to good health.

Hi Jill, I'm sorry about your family history and your need to be here. I hope your doctor will order biomarker testing on your biopsied tissue. Best of luck with the biopsy.

Great! There are also a couple of other groups that I can list: Targeted Therapy Group: https://www.facebook.com/groups/targetedtherapylung/?ref=share EGFR Group: https://www.facebook.com/groups/EGFRlung/?ref=share EGFR Resisters: https://www.facebook.com/groups/EGFRResisters/?ref=share

Great news! I'm on Tag for 27 months now and am NED (No Evidence of Disease). Hope your mom gets there too. If you're on Facebook, you can gets lots of information from this private group. https://www.facebook.com/groups/2098822473719352/?ref=share

This current article from Cure Magazine discusses the neuropathy many chemo patients endure. Looks like there are trials going on for new treatments. https://www.curetoday.com/view/chemotherapy-induced-peripheral-neuropathy-the-invisible-side-effect

Tagrisso is used first line for Stage IV patients. It's not so clear for Stage III, and especially in Canada. My oncologist threw everything at my Stage IIIB cancer: chemo, radiation and then Tagrisso. Some people can get surgery at Stage III and then go on Tagrisso. Some only get chemo, some only radiation. It all depends on where the cancer is. I know that Canada has different criteria for prescribing Tagrisso, so it may not be possible for your mom to take it now at Stage IIIB.

Just bear in mind that mutations can change over time. She may be EGFR Exon 19 today but a different or additional mutation may appear if there is progression down the road. At that point, another biopsy would be desirable.

Looks like your mom's mutation is EGFR Exon 19 deletion, which is what I have. That is considered good news. Tagrisso (osimertinib) may be in her future. It is giving lots of folks a good quality of life.

Hi Izumi, I'm also a Tagrisso taker. I was diagnosed in October 2019 at Stage IIIB. I hope you're doing well and that your side effects are minimal. Below are links to a couple of private Facebook groups that I've found very helpful. We discuss Tagrisso side effects and tips, and the EGFR Resisters are very involved with research. https://www.facebook.com/groups/2098822473719352/?ref=share https://www.facebook.com/groups/EGFRResisters/?ref=share If you have any questions for us, please ask.

Justin, I'm sorry I'm late to this discussion. It sounds to me like your swallowing difficulty was related to the esophagitis. Some people see swallowing therapists for this. As far as I know, they usually practice in hospitals (at least here with n the U. S.). I also have scarring in my lungs from radiation. I had an endoscopy a couple of months after radiation ended, and although it showed that my esophagus had healed with no scarring, I still had symptoms. I think it just takes time, and the acid reflux should also heal. You might want to request an endoscopy if you're still bothered by symptoms.

Hi Bill, welcome to the group. Are you familiar with the Exon 20 Facebook group below? You might find someone with experience there. Although I have an EGFR mutation, mine is Exon 19 deletion. https://www.facebook.com/groups/136311127056022/?ref=share

Kevin, so sorry that your wife is going through this, and I hope she recovers quickly. I know that some people on my EGFR targeted therapy have to go off it for one reason or another and then resume. Be sure to let her oncologist know about her Covid treatments so they can determine when to restart.

Loss of appetite and diarrhea are common with chemo. Fatigue is common with both. Your mom may have the start of esophagitis, so be sure to let the radiation oncologist know. She may need pain medication. It's really important to eat and hydrate, whatever she can tolerate. I always recommend a palliative care specialist before starting radiation in case of esophagitis. I had a wicked case that took 5 months to heal, and my radiation oncologist was rather unhelpful.

In addition to your pulmonologist, maybe you'd see your primary care doctor for a blood workup. Hope you feel better soon.

Back at my diagnosis in October 2019, SUV in my LLL tumor was originally 9.9, and the lymph nodes were 8.2. Interestingly, after I had a bulk Teflon injection into my paralyzed left vocal cord, the SUV increased from 4.8 to 6.2. I still have paramediastinal airspace opacity, probably from radiation. SUV is stable at 2.5.

As @Minh asks, did you have biomarker testing done? Immunotherapy may not even be a choice for certain mutations. I was diagnosed with inoperable Stage IIIB adenocarcinoma in October 2019. My oncologist threw the book at my 7 cm tumor and involved lymph nodes: chemo and radiation first, then a targeted therapy for my EGFR mutation. Chemo wasn't as bad as I'd feared, but radiation was rough. The good news is that all of the treatments worked, and I've been NED since April 2021. Ask about your biomarker results before making any decisions. A second opinion wouldn't hurt either. You're in Long Island. I don't know if you're a 9/11 survivor, but if you are, your lung cancer may have been caused by the toxic exposure. I am a survivor and can provide lots of info on this.

Yes, you and your mom both will. The chemo might bring some side effects but those should be temporary. Hoping for good results for her.

Pneumonitis is also a side effect of my EGFR targeted therapy. But I had pneumonitis anyway for about a year after radiation, not from the targeted therapy. Mine did not require treatment and no longer shows up on scans. I agree with Rikke, the Enhertu is worth a shot. Best of luck.

My cough went away after 2 weeks of chemo and radiation. Based on my scans immediately after treatments ended, it's clear those treatments were having the desired effect.

Walfredo, you've waited a long time not to have definite results yet, so it's no wonder you're anxious. I really hope you get answers soon. Take care.

Get some Ensure or Boost in case food becomes unpalatable. I never liked smoothies myself, and to this day they remind me of being sick. For radiation, it's helpful to consume lots of protein like eggs, peanut butter, fish/chicken/meat. I really liked Trader Joe's macaroni and cheese. Ice cream is good too. For chemo, her chemo education will advise to stay away from uncooked vegetables and fruit that does not have a peel that can be removed, to avoid any potential Ecoli or other bacteria. On top of all that, your mom should eat whatever she can tolerate. This may change from moment to moment. Don't worry about a healthy diet, the goal is to keep her weight up. Best wishes to your mom.

Lizzy, I'm very sorry you've reached this point. I hope that you get the best hospice care possible. Wishing you peace and comfort.

It's unlikely that, without treatment, you would go for 3+ years and not have worsening symptoms of lung cancer. I understand the worry, but try not to get ahead of yourself. Even after a diagnosis, it can take weeks for a treatment plan to be developed, and that waiting period can test one's patience. I really hope you get a clear report.

Please insist on a chest Xray or CT scan to determine whether you have something to be concerned about. Without one, it's just a guessing game. Your persistent cough and hoarseness could be acid reflux or even allergies, both of which are easily treatable. I hope you'll get a scan or Xray soon. This is the first step for all of us and is the only way to diagnose lung cancer, if you have it. And of you don't have it, your mind will be put at ease.