[Need to vent]

My condolences for your losses, Chuck. I was also able to tell my father I had no sign of cancer the month before he died last year. I think I was able to put his mind at ease. 

Congratulations on being NED.  I hope the year gets easier for you. 

[Steroid Crash question....]

Wow, Mike, what a terrible experience, and I can relate. I echo everything that the others have said. 

I'm a member of the 9/11 survivor community, having been an office worker downtown for many years. I've gotten qualified into the World Trade Center Health Program and have made my way through the requirements of the 9/11 Victim Compensation Fund. I don't know if you have a similar situation, but I can tell you everything you'd need to know. 

I was diagnosed with Stage IIIB non-small cell adenocarcinoma in October 2019. I had 6x chemo (carboplatin and taxol) and 30x radiation first. Biomarker testing showed I had an EGFR mutation (like Kamoto), and I started on the targeted therapy Tagrisso in March 2020. I've had No Evidence of Disease (NED) since April 2021. 

I tell you all this to stress how important biomarker testing is, so I hope you'll ask your oncologist if you have a gene mutation that is targetable by a pill. 

I never had steroid crash, but steroids did give me other side effects and now I have to be careful about oral steroids in the future. Did you get Benadryl in your infusion? That generally helps prevent a reaction to the chemo drugs. 

I hope you'll consider getting a second opinion. MSK in the city has a good thoracic oncology department. 

As for prognosis, my oncologist has never told me how long I have to live. I've been through some really rough times with my treatments (particularly radiation), and I'm just happy to be healthy again. Living one day at a time with gratitude. 

This group will certainly understand your concerns, and LUNGevity is a great resource for information. Stick with us. 

[New member - Hello.]

Hi, Mike and welcome from a former New Yorker (Rockland County). Sorry you have to be with us. I've had chemo and radiation before starting on a targeted therapy for my particular gene mutation. I'll look for your question under Chemotherapy. 

[Results of the most recent scans]

Fantastic! 

[My updates (22 Years old, NSCLC)]

Ale, I actually felt worse when my eyelashes fell out. I kind of expected to lose my hair. The good news is that it will grow back. Mine is a different texture (and frizzy thanks to my targeted therapy), but at least I have hair! 

[Managing cancer pain]

Great point. I also recommend palliative care before starting treatments. They are more than pain management. There is good information on palliative care under "Supportive Care". 

[New member stage 3a NSCLC, NED after 15 months]

Your story is a little like mine. I was misdiagnosed with allergies and acid reflux for several months after I had lost my voice. My PCP finally sent me for a chest Xray, and based on that, I was diagnosed in October 2019. My Stage was IIIB, and biomarker testing revealed an EGFR mutation. 

I had chemo and radiation first, then started targeted therapy in March 2020. I've been NED since April 2021. My next PET scan is in a couple of weeks. 

Good luck to you and hope your scan continues to show NED! 

[Palliative Care During Treatment]

Thanks, Lou. I cannot recommend palliative care enough! 

[What are your thoughts on second opinions? (When, where)]

Tagrisso has much easier for me than chemo or radiation. You may or may not get side effects. Mine are: splitting nails, frizzy hair, nasal allergies and an itchy rash/eczema that comes and goes. Everything is manageable. I'm on it for 28 months so far. 

I can recommend these private Facebook groups for support and info:

Tagrisso (osimertinib) Patients & Caregivers Group: https://www.facebook.com/groups/2098822473719352/?ref=share

LUNGevity Targeted Therapies Group: https://www.facebook.com/groups/targetedtherapylung/?ref=share

LUNGevity EGFR Group: https://www.facebook.com/groups/EGFRlung/?ref=share

EGFR Resisters Lung Cancer Patient Group: https://www.facebook.com/groups/EGFRResisters/?ref=share

Just know that all groups can be a double-edged sword, because people share both good and bad or sad news. 

[What are your thoughts on second opinions? (When, where)]

@LilyMir, I attended the same DF presentation. I pretty much consume all possible EGFR-related information. 

[Finally starting treatment]

Jill, your oncologist is mistaken. I'm Stage IIIB and had biomarker testing. It is now standard practice even for Stages 1 and 2. I had chemo and radiation before starting a targeted therapy for my EGFR Exon 19 deletion mutation. Please press for at least a liquid (blood) biopsy to be sent for Next Generation Sequencing. 

For me, chemo wasn't too bad but radiation was rough. The lymph nodes being treated were right on top of my esophagus and I got a wicked case of painful esophagitis. The best thing to do is get a palliative care specialist on your care team before starting treatment. 

If your oncologist declines to do any biomarker testing, I would seek a second opinion. 

[Hello to the community from Samantha]

Hi Samantha, glad you joined. I know what you mean when you say you feel alone. I did too when I was undergoing treatment (chemo and radiation). I didn't know about LUNGevity then, and I didn't know anyone with lung cancer. I was diagnosed at Stage IIIB in October 2019 and did not think I'd last through 2020. Believe me, that was a rough year. 

Well, I made it through and I'm still here and healthy. This community and LUNGevity's many resources have helped me understand this disease and my particular driver mutation (EGFR Exon 19 deletion). We may not have all the answers, but chances are someone here has similar experiences. Don't hesitate to ask, and venting is acceptable! 

[Scan results]

Great news, Gini! 

[Malignant lung cancer]

I'm sorry I missed this. Research is developing a 4th generation EGFR targeted therapy, and they are also looking at combination therapies. Plus, at the time of progression, the mutation can change. Try to take one day at a time and don't look at statistics. Many people are getting quality years on targeted therapy. 

[Well Mayo knows how to deflate my progress - 2 Distinct Cancers present.]

Chemo today is not like it was in the past. I had chemo and radiation before starting Tag. For me, radiation was hardest because it treated lymph nodes near my esophagus and caused esophagitis. If you do elect for chemo, get a palliative care specialist on your team beforehand. I'm sure Mayo has that resource. 

[What are your thoughts on second opinions? (When, where)]

Dana Farber and Mass General both have excellent EGFR centers, FYI. 

[Egfr+ but getting immunotherepy?]

If you register here, the recordings will be available for a while:

https://www.lungevity.org/blogs/ILCSC2022

[Tachycardia and increased Ferritin]

I don't know, Karen. I think my primary doctor is being overly cautious. My oncologist is not concerned. 

[Molecular Residual Disease(MRD) treatment]

No, I've never even heard of Signatera. 

[Tachycardia and increased Ferritin]

I just saw my primary doctor on Friday for a regular checkup. She wants me to see a cardiologist to keep ahead of any potential cardiac issues that Tagrisso might cause. So I'll be adding that specialty to my care team. 

[Egfr+ but getting immunotherepy?]

I think there may be a recording available in a few days, so keep checking the home page. 

[Molecular Residual Disease(MRD) treatment]

Testing for a mutation is the right move. From my very limited understanding of MRD, a targetable mutation is what would be treated. 

[Egfr+ but getting immunotherepy?]

The question of immunotherapy for EGFR was answered in today's EGFR breakout session of LUNGevity's International Lung Cancer Survivorship Conference. Immunotherapy is not recommended for EGFR patients. The patient will not receive any benefit from it. I strongly urge Kelvin's mom to get a second opinion. 

[Low blood pressure]

Sorry, I missed this question. A quick way to raise BP is to drink a bottle of water at one time. My father's cardiologist gave him this advice a few years back. 

There are medications to raise BP if it's consistently low. 

One of the side effects of Tagrisso (the targeted therapy drug I take) is low sodium. I've learned to see my primary doctor for bloodwork that includes sodium, electrolytes and B-12. When my sodium was low, I used LMNT electrolyte powder (available on Amazon). 

[When does lung cancer cough go away?]

Everyone is different, but I seem to recall a reduction in cough after about 2 weeks of chest radiation (and 2x chemo). Of course, that's when esophagitis started, so the coughing was the least of my worries. 

Afterward, I developed a dry cough after 7 months on Tagrisso. My oncologist referred me to my pulmonologist, who diagnosed nasal allergies/post-nasal drip. Since then, I take Claritin daily and the cough is gone.