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Hi all,

So… it’s been a rocky start to 2022. My biopsy results came back, and while I had a positive hit for EGFR, it’s a duplication on exon 20… which doesn’t respond that well to targeted therapy like exons 19 and 21. So it’s straight into chemo (pemetrexed and cisplatin), alongside some fairly hardcore radiotherapy to the lung primary, and then some SBR afterwards for the shoulder metastasis. I’m more than a little scared, and have no idea what to expect in terms of side effects. If anyone has any words of wisdom about how to get through this (particularly with two small children) I’d love to hear any advice you might have. And if anyone knows of any positive survivor stories following similar treatment, please let me know!! I could do with some hope!!



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Hi GIni,

I've seen many of your past posts and often don't respond because my LC treatment was surgical-only.  I'm sure you'll be hearing from others very soon.  In spite of my own inexperience there is one thing I hear over and over and it sticks with me; "Get a palliative care physician on your team".  This form of care is an excellent addition to your team because their job is to help minimize any negative effects you may experience from your treatment.  I know that if my cancer recurs and I wind up on chemo I will definitely get palliative care added to my protocol.  There is a section in our forums called "Chemotherapy" and it can be found here.  You can read and share with others going through a similar treatment.  

And there is always hope.  In 2010 I was diagnosed with colon cancer...had a surgical resection and have been clean since.  My lung cancer surgery was May 2019 and so far all scans are NED/Stable.  There is HOPE, look at people like Tom Galli; diagnosed in 2003 or 2004 and declared "cured" today.  Everyday treatments are getting better, more focused and more effective.  So please hang in there.  You are young and therefore stronger to respond to treatment in a positive way.  I'll be watching your progress and keeping you in my prayers.


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I don’t share your mutations on exon20; mine is a point mutation— S768i— but there’s an exon 20-specific group on Facebook that is run by Marcia Horn— she is one sharp cookie. Because my mutation is a point mutation, not an insertion or deletion, I wasn’t accepted to the group. But you might be an exact fit. I also have the more common L858R, on exon 21.  

My treatment was concurrent chemo and radiation— 30 days IMRT, with chemo on one of the days I was in for radiation. Before treatment started, I was sent home with a progression of meds to use for nausea and the stern instructions to use them  consistently if Ifelt even a hint of nausea. 

Because of the location of some of the evil—i.e., cancer— there was concern that my esophagus might be affected. I had swallowing therapy beforehand—no kidding. Because of that concern, they were also worried about weight loss and I immediately had to start adding calories to my eating. I learned that people who maintain or increase their weight during treatment have better outcomes. 

My biggest challenge was fatigue. Like, feeling flattened by a truck fatigue. I heard that exercise helped with that and it did! But I could not have managed my house without help. I was working at the time and that was also challenging. If you could set yourself up with some childcare in the afternoons of radiation so you could sit or lie down, that might be helpful. 

I don’t know what kind of hope you are hoping for; each of us has such a different journey. But everywhere I’ve connected with fellow survivors, I have been awed by their persistence, strength, humor, and determination. You can find your way to that, too. You can walk this road, and you will. And this group, and others, will help. 

I wish you all the best. 

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The good news is, 3 or more medications have recently been approved for your mutation. Check out the EGFR Resister Facebook page and search for Exon 20. You will find articles on these new drugs. 

I know you must be out of your mind with worry, particularly for your babies. Remember you're not alone. There are many fighting this same fight and doing quite well.

Praying for you and your family

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Agree with @DMillerand I urge you to join the EGFR Resisters Group on Facebook. In that group there are other young parents like yourself, and they report the latest news about treatments. 

If your oncologist isn't familiar with the new medications to treat Exon 20 mutations, please seek a second opinion with an EGFR specialist.

I also don't share your mutation, mine is Exon 19 deletion for which targeted therapy is working well. 

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You'll get through this! Last summer I had pemetrexid and cisplatin 4 times, each 3 weeks apart. At that same time I got 30 daily radiation treatments. I actually felt good during the treatments. I didn't lose any hair and I was only "down" a couple of days after each infusion. The radiation caused esophagitis by about the 5th week, but that resolved. The main thing is that treatments have worked so far. I have some scarring on my lung from the radiation, which I can feel, but it seems to be getting much better. I hope these treatments will be successful for you and that they can zap the thing in the shoulder too. It's so scary, but I will be pulling for you (and for all of us!) 


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