Call it stable or call it NED...whatev... - Lung Cancer Support

Lung Cancer Support

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Call it stable or call it NED...whatever, I’ll take it!


Every day should be a good day but today was a really good day. PET/CT and brain MRI showed zero metastasis and my primary right upper lobe nodule measures only 10 mm with no metabolic activity. Tumor markers are in normal range as well.

Last April, after progression on Carbo/Alimta and Alimta maintenance, I started Docetaxel (Taxotere) and Ramucirumab (Cyramza) as second line and I’ve been stable since last August. Today’s was a telling scan because we dropped the Taxotere 9 weeks ago so I could travel to Australia and decided to leave it out until this scan as an experiment of sorts (I continued with Cyramza). I’ll see my doc tomorrow and we discuss where to go from here.

I’ve had 26 chemo infusions since my stage 4 diagnosis almost 2 years ago. Chemo sometimes gets a bad rap but it has worked for me and I am grateful!

15 Replies

Hi PegD,

Congrats on your good news! I was just diagnosed in Feb. 2018 at stage 4 non-small cell adenocarcinoma and metastasis to the bones. I had some radiation to target the bones and was luck enough to have a response to Gilotrif (generic name Afatinib). I read your previous posts and you had mentioned being turned down for approval for this drug.

I have a rare point mutation in EGFR (E709K in exon 18), and the response rate to Gilotrif/Afatinib with this mutation was only 30%. Your story is an inspiration for me as I had been scared to be a non-responder and would have to turn to chemo. I know I will eventually stop responding to the drug, but as my first scan 5 weeks ago had shown a 50% reduction in the tumor. I have another scan coming up in less than 2 weeks and clinically I feel much improved. I feel like I've bought myself quite a bit of time already. Even though you have a rare mutation, you have one, so keep an eye out on the data for case studies or in vitro studies for a match. I have a PhD in molecular microbiology and it's hard even for me to dig through the literature, but you seem quite determined to do research so keep at it. In your previous post, you mentioned you have the EGFR truncation intron 27? I didn't see anything come up in a quick search.

Did your pathologist test for PDL-1? My PDL-1 was 1%. Because I had a better chance of responding to Gilotrif/Afatinib, some of the oncologists on my team at the hospital seemed to discount it (Keytruda is one of the drugs for this marker). However, being the pain in the butt that I am, I insisted that my current oncologist tell me know about other options I might have have upon treatment failure. He happens to be the director one of the Dana Farber Centers I go to, and he said that there is evidence that some people even with low expression of the PDL-1 marker could respond to Keytruda or similar drug.

This makes sense since PDL-1 is an imperfect marker. While many people with high expression respond to immunotherapy, some with low expression do respond. You may have more luck with getting approval for these drugs at this point as there's more clinical subset data. You might consider it while you're in remission or have NED.

I'm so happy that two years on, you're doing so well with chemotherapy thus far. Thank you for quelling my fears about it, and I'm sure others who are newly diagnosed also appreciate your updates. I'm "relatively" young in my mid 40s and a never smoker. I've got 5 years before my son graduates from college and the information that you and others give on this site gives me hope that I just might make it to his graduation.

You're also young and have a full life to live too. Congrats again and keep up your good work on advocating.

Best wishes,


PegD in reply to thila

Thank you Thila. I hope you have a long and successful relationship with Afatanib! My EGFR truncation intron 27 mutation is usually only found in Glioblastoma. I haven’t found anyone else with this mutation in the LC community but I keep searching for relevant info. I talked with my onc today about using any left over tumor sample to test for PDL-1. When my sample was sent to Foundation Medicine it was tested for mutations and TMB (tumor mutation burden). It was considered that having a low TMB (mine is low at 4) would coincide with low PDL-1 expression. With new clinical findings and changing standards, we are hoping there is enough of the original tumor left for PDL-1 determination. As it stands, a new biopsy would not be indicated unless I were to have progression to warrant either a blood biopsy or new tumor biopsy. Right now, (and hopefully forever) there isn’t anything to biopsy!

That said, we decided to stay with Ramucirumab for 3 more cycles, scanning again in 11 weeks. If all clear, it’s a possibility that we could take a break entirely. He wouldn’t guarantee that, but he did throw me a bone😊. As you know by now, lung cancer is tricky but I feel very lucky and blessed with these positive results.

It’s an exciting time in the lung cancer world with new studies and findings. Let’s all plan to stick around so we can hopefully take advantage of new treatments and experience longer, healthier lives! Also, let’s not forget how important it is for us as patients to share our stories and advocate for more research $ and early detection.

Keep us posted us on your upcoming scans and wishing you all the best in your LC journey.


thila in reply to PegD

Hi PegD,

Cross fingers, I hope you won't have a need to take new biopsies either! I'm surprised that they did not test for PDL-1 even 2 years ago. I suppose the Foundation Medicine was a panel of DNA tests and your oncologist would have needed to ask specifically for the PDL-1 protein expression?

In any case, it seems like there are immunotherapies indicated regardless of PDL-1 expression for stage 4 and even stage 3 lung cancer.

I'm sure you're keeping an eye out on all of that. I knew little about lung cancer therapies when I was diagnosed 4 months ago, but I'm having to learn quickly. I agree it's an exciting time for all the new and upcoming treatments. We'll kick this thing!


I'm so happy for you keep it up hopefully it will turn into a cure. I sincerely hope so. I think of you a lot. Your going to make it o have confidence on you. Love susiejo

PegD in reply to SusieJo1948

Thanks so much for your positive words, SusieJo!

What great news. I hope this keeps up for a very long time.

PegD in reply to JeanE41

Thank you, Jean!


So very happy for you! I’ve been so intrigued with your unusual diagnosis since you described it to me and I really appreciate the detail you put in your entry.

You’ve an amazing team working on your behalf. Sending hope that this continues to work for you for a very long time. NED is a great place to be.

PegD in reply to Denzie

Thank you Denise! You are one of my inspirations 😘

What fantastic news! You have certainly walked an interesting (and hard) path. Your story is such a gift to everyone here. Hugs.

PegD in reply to FtB_Peggy

Thank you, Peggy!


Thats great. I'm so happy for you!

PegD in reply to Hidden

Thank you!

So inspiring! God bless and heal you🙏🏻You give me hope for my mom battling Stage 4 NSCLC.

PegD in reply to Buddy03

There is always hope. Wishing you and your Mom the very best.

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