Judy M2

Glad you've got your treatment plan. The worst part is waiting for that. Like Jesse says, chemo and radiation may give you fatigue and other side effects after several sessions, but just know that they are temporary--and the treatments are very effective. I had a particularly rough time with both but I'm back to normal now and consider everything I went through to be worth it. You can do this!

Dr. Christian Rolfo, who studied EGFR for his PhD, is leaving Maryland for Mt. Sinai Hospital in NY. One of the members posted that she was sorry to lose him. He may be a good resource for you when he gets there.

Hi Mike, I'm so sorry for your diagnosis. But here is the bright spot: you are EGFR+ and going to start on Tagrisso. The EGFR mutation is most common in never-smokers. I was diagnosed with Stage IIIB EGFR (Exon 19 deletion) in October 2019. I had chemo and radiation and started Tag in March 2020. I would say that your shortness of breath will decrease within a few days of starting Tag, believe it or not. I have heard this from several people. At least in the meantime have your pulmonologist prescribe an albutirol inhaler. I still carry mine in my purse but never need it anymore. Tagrisso

Annabelle Gurwitch is a member of one of the Facebook EGFR groups, and I've read about her difficult lung cancer story in other articles. She was recently on the Today Show to bring awareness for the need for research and funding: https://www.today.com/health/covid-19-test-leads-lung-cancer-diagnosis-annabelle-gurwitch-t216306 And a Philadelphia chef and his wife are in the news, also to raise awareness: https://www.inquirer.com/food/jim-burke-lung-cancer-tag-time-hapy-hour-20210504.html Great job by both of them.

It is unfortunately illegal in the US for patients to give leftover Tagrisso to anyone else. Perhaps contact the manufacturer Astra Zeneca? They have a financial support program here in the US. I'm very sorry to hear of your mom's progression.

Sandy, if you continue to not be able to drink, ask your infusion center to give you IV hydration through your port (if you have one). Dehydration really messes up your mind. I went 3x a week for hydration.

It is NOT true that targeted therapy isn't approved for Stage IIIB, because I take it. It is very expensive, so your oncologist may have to do battle with your insurance company. Surgery also wasn't an option for me. I did not have "clean" scans after 6 weeks of chemo/radiation but rather slow improvements and "continuing positive treatment response". I still am not NED after 14 months but have been stable and improving. It has been a long road for me but all the treatments seem to have been effective. Many members here don't have targetable mutations and are living with lung canc

When I was in the hospital, my surgeon (of all people) recommended Cepacol lozenges, which were OK for temporary relief. I love MuGard but it's like $500 a bottle. My chemo nurse just gave it to me. Works great for mucositis.

And another member said that her husband took both Tag and Avastin but not as part of a clinical trial. He had progression at 10 months and they don't think there was any benefit to Avastin. I see many success stories with just Tag alone, and I feel like I'm one of them.

Here is another answer about the trial. Please note that I highly recommend a port if you'd be getting any chemo. "I was in this trial when first diagnosed 2/18. I had brain mets at the time so the avastin made some sense. The downside is that I had to get a port right away in my journey--something I could have avoided for several years had I not taken the avastin. I progressed 9/19--about the time it was predicted I would progress had I only taken tagrisso. Hard to say what the avastin added to the treatment but it had a negative effect on my kidneys over time and added to the side affe

A couple of members in the FB groups have taken both Tag and Tag plus Avastin but not as a trial. Both drugs cross the blood-brain barrier so it's possible they are looking at the Avastin as a booster for brain mets.

When I had esophagitis, my oncologist gave me some Boost Soothes. I lived on those and Ensure. But I wouldn't suggest them for long-term use. My father now can only consume thickened Ensure due to swallowing difficulty. His hospice nurse says that the Ensure diet and being bed-bound are contributing to breakdown of his skin. So they have their uses but also drawbacks. I recently found out my B12 is low (probably still due to chemo), so I got a B12 shot at the doctor's and am now taking 1,000 mcg B12 daily. I really don't notice a difference though.

I heard back from one member who was invited into the trial but declined because of "logistics challenges". I wonder whether they are looking for treatment-naive participants, meaning no prior treatments. Looking forward to learning more about it.

Someone just posted the article below on the LUNGevity FB EGFR Resisters Group page regarding a promising trial for a combo treatment after progression on Tagrisso. https://www.targetedonc.com/view/oleclumab-plus-osimertinib-show-early-activity-and-tolerability-egfr-mutant-nsclc

Thanks for the article, @LexieCat. I posted on the FB Tagrisso page, where some of the members hadn't even heard of biomarker testing.