New member intro-Stage 4 NSCLC

[MikeG]

Hello,  

I was diagnosed in Mid-March with Stage 4 NSCLC and was thrown for a loop.  I'm 62, never smoked, low Radon level at home, always took care of myself physically and I thought my shortness of breath was leftover from the Covid I had back in October.  On March 17 I finally went to a nearby urgent care to get it taken care of and they sent me to the ER where my journey began.  CT scans showed nodules throughout both lungs, "impressive" was the term one doctor used, and it was in some bones.  A couple weeks ago I did five consecutive days of radiation on a couple vertebrae where the PET scan showed the lesions were getting close to the spinal chord.  Also had a few small spots in my brain that took one fairly short session under the Cyber Knife.  In January I had developed pain in my hip that was diagnosed as arthritis, turns out from later CT scans that the cancer was in the bone there and it cracked near the socket.  The strange thing is now it doesn't feel so bad.  Anyhow, just yesterday I found I had the EGFR mutation and next week I will start on Osimertinib, a daily pill.  They will also give me a once-monthly shot of a drug to strengthen my bones.

I feel short of breath with moderate activity and find myself needing to sit down a lot.  I'm hoping this will improve while on the pill but not sure why it would.  Seems the tumors/nodules will still all be there, affecting my breathing.  I guess I'll find out.  I will be spending some time on this site, which I just found yesterday, and read about the experiences of others.  I just wanted to introduce myself here at this time.  Thank you for your interest and for your site.

[Tom Galli]

Mike,

Welcome here!

So you have stage IV non small cell lung cancer, adenocarcinoma, with biomarker testing revealing EGFR. You’ve had precision radiation to bone and brain mets with apparent good results. And, you will soon start systemic treatment in the form of the targeted therapy Osimertinib. You are also having a monthly (likely) infusion of a drug (likely Zomenta) to replace bone structure lost from bone mets. Your question is addressing shortness of breath. Can Osimertinib relieve that symptom?

Maybe, hopefully, but I’d suggest a consultation with a pulmonologist to assess your SOB (shortness of breath). There may be other medications that will address this symptom. 

Many of us on this forum share your diagnosis. They will likely chime in soon with targeted therapy advise and suggestions. Till then consider I was diagnosed in 2004 with stage IIIB non small cell lung cancer (NSCLC), but squamous cell, not adenocarcinoma. It progressed to stage IV after 3 thoracic surgeries and I’ve had a multitude of treatment including CyberKnife precision radiation. I reveal my treatment details to suggest that if I can live, so can you. 

Stay the course. 

Tom

[Judy M2]

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 does come with a long list of side effects but don't let that scare you off. It's a wonder drug. You will need to get an EKG/echocardiogram first to establish a cardiac baseline. Then if there are no cardiac issues, you'll be cleared to start Tag. Your oncologist will do blood work monthly and eventually graduate to every 3 months. They want to monitor your kidney and liver function, as well as other key factors. 

My scans over the last year have showed increasing improvement. I was stable for the longest time and then yesterday I got the news that I'm finally NED (no evidence of disease)! I have minor side effects with my nails and a dry cough that is either from Tag or allergies. Very tolerable. 

There are several private LUNGevity Facebook groups related to Tagrisso and EGFR. I can list them for you if you're interested. 

If you have any Tag questions, this is the place to ask. And don't hesitate to ask your doctors too. But it looks like they are following the standard of care for your Stage IV. 

[LexieCat]

Hi, Mike, and welcome from me, too. I'm also Stage IV but no targetable mutations. I had progression after a few months of chemo/immunotherapy and just started a clinical trial.

You've gotten great info/advice above. The EGFR+ Tagrisso folks will have the knowledge most relevant to you, but the entire forum is a great place for knowledge and support.

Glad you found us!

[LouT]

Mike,

Welcome to our forum.  For my part I had a surgical protocol to treat my LC (Lung Cancer).  Like Tom I was NSCLC Squamos, and I had a lobectomy.  So, while I can't offer much input on your treatment, I can tell you that there are many here who can and will.  Don't ever hesitate to ask any questions you have.  Folks here have experienced pretty much all that can happen.

Lou

[Jesse L.]

Hello from me as well...so sorry we have to meet this way, but hey, that's the way it is. You may be surprised how much your targeted therapy will make a difference. I myself have no actionable mutations so excepting for missing the possible side effects, I kind of envy you. That being stated, I have heard good things about Tagrisso. I really do wish you well on your therapy!!

Stay in touch and let us know how it goes for you...

[MikeG]

20 hours ago, Tom Galli said:

Mike,

Welcome here!

So you have stage IV non small cell lung cancer, adenocarcinoma, with biomarker testing revealing EGFR. You’ve had precision radiation to bone and brain mets with apparent good results. And, you will soon start systemic treatment in the form of the targeted therapy Osimertinib. You are also having a monthly (likely) infusion of a drug (likely Zomenta) to replace bone structure lost from bone mets. Your question is addressing shortness of breath. Can Osimertinib relieve that symptom?

Maybe, hopefully, but I’d suggest a consultation with a pulmonologist to assess your SOB (shortness of breath). There may be other medications that will address this symptom. 

Many of us on this forum share your diagnosis. They will likely chime in soon with targeted therapy advise and suggestions. Till then consider I was diagnosed in 2004 with stage IIIB non small cell lung cancer (NSCLC), but squamous cell, not adenocarcinoma. It progressed to stage IV after 3 thoracic surgeries and I’ve had a multitude of treatment including CyberKnife precision radiation. I reveal my treatment details to suggest that if I can live, so can you. 

Stay the course. 

Tom

11 hours ago, LouT said:

Mike,

Welcome to our forum.  For my part I had a surgical protocol to treat my LC (Lung Cancer).  Like Tom I was NSCLC Squamos, and I had a lobectomy.  So, while I can't offer much input on your treatment, I can tell you that there are many here who can and will.  Don't ever hesitate to ask any questions you have.  Folks here have experienced pretty much all that can happen.

Lou

Hello all,

Thank you for your responses and encouragement.  Judy M2, congratulations on your NED notification!  Your response was especially encouraging as we have similar diagnoses and you've done so well.  I will have the echocardiogram on Monday and as soon the hospital works everything out with insurance I'll get an appointment next week to start the Tagrisso.  I hope my shortness of breath disappears quickly as yours did.

Tom, you are correct on the Zomenta, I had a meeting with the PA yesterday and was filled in on more specifics of the drugs I'll get, side effects, etc.

I've been reading other entries and responses and am so impressed with the helpfulness of the folks on this site, willing to give thoughts and insights from their own experiences, as have you above.  Again, thanks for your responses.