Have stage 4 NSCLC being treated with Targeted Therapy, Any one else?

Posted by kenber45 @kenber45, Aug 13 12:15pm

Would love to hear from others who may be having this treatment or have had it in the past. Here's my story:
Long time smoker, had a cough for a few months and then started getting short of breath. Chest Xray showed Pnuemonia, recommended CT Scan of the Chest, CT showed left lower lobe mass, Right hylar mass and swollen lymph nodes, right upper lobe mass. Recommended CT PET Skull Bass to Knees, PET CT showed metabolic activity in the lung areas and mediastinum. No other organ Involvement. Recommended Biopsy. Pulmonologist biopsied all suspected area's of the lung and ordered a Circulogene Blood test to look for genetic variants in tumor cells to make Targeted Therapy possible. Biopsy showed Left lobe was cancer. Lymph modes were Positive for Cancer cells. Right lobe was Negative. Mayo oncologists ordered brain MRI prior to consultation and Brain Mri showed 6 small metastatic lesions in my brain. Being treated with Lazertinib and amivantamab for the EFGR variant I have. Please share if you have experience with this. Thanks

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I have NSCLC with Mets to brain, diagnosed June 2004, non smoker, at the age of 79! Had four rounds of chemo-Cintplatin & Altima (not sure of the spelling one radiation treatment to the brain lesions, targeted with EFGR and have been on Tagrisso since July 10, 2024. My scans have had no evidence of disease times one & half years. I’m 81 now and have my limitations and the Tagrisso has side effects, but I push through and praise God!
I pray that you will have good results!

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hi @kenber45 - I hope your treatments are going well without difficult side effects. if you enter your targeted therapy medications in the search bar, you can find other posts where they have been discussed here previously. you also might want to search using the brand names. amivantamab is Rybrevant and lazertinib is Lazcluze.

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I have had 3 weekly Subcutaneous injections of the Rybrevant and been on the Daily Lazcluze for 1 week. Prior to starting the Rybevant I was very short of breath and coughing allot. Literally after the first injection those symptoms subsided and have not returned. The only side effect Ive had has been some minor rash issues around my eyebrows and forehead. They gave me a plethora of soaps and moisturizers to use prophalactivly which I have done. Both my Mayo and local Oncologists felt the benefit of adding Chemo drugs to the Targeted Therapy drugs would not be worth the quality of life issues associated with that combo. I'll get a follow up scan in a month. Im very confident my tumors will be much smaller or gone as the dramatic relief of my pre treatment symptoms indicates it's working well. I feel so good! If this is as bad as it gets I am most blessed! Thanks everyone! Praying for you all.

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Profile picture for almarodel @almarodel

I have NSCLC with Mets to brain, diagnosed June 2004, non smoker, at the age of 79! Had four rounds of chemo-Cintplatin & Altima (not sure of the spelling one radiation treatment to the brain lesions, targeted with EFGR and have been on Tagrisso since July 10, 2024. My scans have had no evidence of disease times one & half years. I’m 81 now and have my limitations and the Tagrisso has side effects, but I push through and praise God!
I pray that you will have good results!

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@almarodel
Same for you Alma! Love your dress and you out on th sand!

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I am on Alectinib...for ALK Lung Cancer

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I also have ALK+ stage 4 lung cancer and am taking Lobrena. I took Alectinib for 6 years and then had brain mets so I was switched to Lobrena. Good luck to you!

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Profile picture for mally007 @mally007

I also have ALK+ stage 4 lung cancer and am taking Lobrena. I took Alectinib for 6 years and then had brain mets so I was switched to Lobrena. Good luck to you!

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@mally007 Six YEARS is Awesome! May you have many more!

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Profile picture for mally007 @mally007

I also have ALK+ stage 4 lung cancer and am taking Lobrena. I took Alectinib for 6 years and then had brain mets so I was switched to Lobrena. Good luck to you!

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@mally007, I hope the lobrena is going well for you! I'm sure switching medications after six years wasn't easy. I've been taking alectinib for 6 years, 4 months, and counting... Scans are scheduled for next month.
How are you feeling on the Lorbrena/lorlatinib?

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Profile picture for Lisa, Volunteer Mentor @lls8000

@mally007, I hope the lobrena is going well for you! I'm sure switching medications after six years wasn't easy. I've been taking alectinib for 6 years, 4 months, and counting... Scans are scheduled for next month.
How are you feeling on the Lorbrena/lorlatinib?

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@lls8000 I only take half a dose as my oncologist says the side effects are very harsh. I had the random muscle aches and pains when I first started. I take it in the evening as my oncologist also said that people would have different feelings/hallucanations so I thought maybe I could just sleep through that. LOL
I don't have the fatigue that I had on alectinib. I have scans and my 3 month brain MRI at the end of the month. It was a year ago almost to the day that I had my yearly brain MRI and I had 12 spots. They were small spots and I had them zapped and they haven't come back yet! Good luck on your scans next month!!

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I was diagnosed with Stage 4 non small cell lung cancer in December 2025. Had pneumonia August 2025 and CT scan also showed a mass. A biopsy in September was NEGATIVE for cancer. Had a follow up CT in November and another biopsy in December that was POSITIVE for adenoscarcoma of the lung, which spread to a few lymph nodes, my skull (bone) and parts of my brain. It was genetically tested and positive for the EGFR gene. I smoked for about 15 years when I was in my mid teens to age 31. I am now 68. I had a painful "bump" on my head and I saw an interventional radiologist. On New Year's Eve (my worst one ever!) I had a one hour radiation treatment to the bone on my skull. I was fine till I got home and was in so much discomfort and pain, I called the radiologist and they had a backup doctor on call, who told me to take a steroid I was prescribed for taking during treatment. Fortunately that helped in about half an hour. That bump was gopne in about 10 days to 2 weeks (which amazed the radiologist, who said it normally takes about 4 months!) .I started treatment right after New Year's 2026. I've had 9 treatments with Cisplatin & Alimpta and have been taking Tagrisso 80 mg since that time. Side effects were a little upsetting to my stomach, but not unmanagable with the medications prescribed for that. They stopped the Cisplatin after 9 treatments because scans were clearly showing tumors shrinking. I've just been on Alimpta infusions since July. I have one more to go!! Tagrisso gives me sore fingertips, which are sometimes pretty painful, occasional diarrhea, (it's much better than it was at the beginning- not never too bad), and swollen ankles and feet with a bit of a rash. It's not something that would make me want to stop using it since it's working. Good luck to all of you fighting this disease! I stop in here 2 or 3 times a week to check- sometimes I comment, sometimes I just hit like, helpful and hug.

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