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MK


Mary Kate

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Hello,

   I am new to the forum. I have stage 4 NSCLC adenocarcinoma lung cancer. I had a lobe removed in July 2020. Cancer returned Oct 2021. I am grateful to have EGFR mutation so am being treated with Tagrisso since November 2021. So far minimal side effects and I am living much like I was before my diagnosis. It would be good for me to connect with others in similar situations. 
thanks, MK

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Mary Kate,

Welcome to our forums.  You'll find a super group of folks here with all stages, types and experiences with lung cancer.  It's a great place for support, a place to vent, and catch up on other's to refresh Hope.   It sounds like you've already gone through a tough road, but I'm very glad to hear about how well you're doing.  Even though you've been through so much there is always more to learn.  We have a forum that covers EGFR that you may be interested in and it can be found here.  I hope to see you around on the boards.

Lou

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Welcome Mary Kate!

Like you, I had a recurrence after a difficult surgical journey. Unlike you, my lung cancer is squamous cell and there are no targeted therapies for that strain of lung cancer. I've known a lot of folks who've had great results with Tagrisso and really hope you become one of these folks.

Stay the course.

Tom

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Hi Mary Kate and welcome. I'm a Stage IIIB survivor, diagnosed in October 2019. I had chemo and radiation first, then started Tagrisso in March 2020. I currently have No Evidence of Disease (NED) and, as my oncologist proclaimed last week,  I've "kicked cancer's a**". 

In addition to this forum, there are a few private Facebook groups for EGFR folks that you might want to check out:

https://www.facebook.com/groups/2098822473719352/?ref=share

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

https://www.facebook.com/groups/targetedtherapylung/?ref=share

https://www.facebook.com/groups/EGFRResisters/?ref=share

Like you, I have very few side effects from Tagrisso, and I hope to stay on it for a long time. 

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  • 2 weeks later...

Hi Mary Kate, 

I just returned from North Truro! I hope all is well in beautiful Falmouth. What EGFR mutation(s) are you dealing with? I have L858R— an exon point mutation in Exon 21– and S768l — a point mutation in Exon 20. I, too, am on Tagrisso with minimal side effects so far. I feel very lucky! Hope to hear more from you.

 

Karen

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  • 2 weeks later...

Hi Karen,

     Thanks for reaching out. My genome sequencing showed L858R and also EGFR R836C. 
I have had a wonderful summer with no side effects affecting my life. In fact I think I have been even more active. I suppose it’s a subconscious reaction to having stage IV lung cancer…. Doing what I can while I have the energy. My scans have shown a good response to tagrisso in that the tumors have shrunk. I do get very frightened when I feel twinges in my lungs or back. 
It will be one year in early November that I have been on tagrisso. When I read the average is two years before one’s body builds up a resistance it’s scary. That said I am taking it a day at a time and I am grateful for the beautiful days I have had. 
    So you visited the cape from Portland Maine or Oregon? Hope you had a pleasant time and good weather. 
we keep on truckin’    Mary Kate 

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Mary Kate,

We camped in N. Truro for two weeks, from Oregon. Kinda crazy, but it was an annual family tradition for decades, and in the spirit of let's do all the fun things until maybe we can't, we just...did it. Lots of planning, but so lovely to be there. 

I'm thrilled for you that the Tag is having a positive impact. And, I do completely understand the fear of twinges-- I've been hoarse for about four weeks, which can be a sign of you-know-what, but my primary care doc says I coughed so hard from my sinus infection that it's going to take a while for that to recover. Scans on Monday, so...🤷‍♀️

Glad you're here. Chime in!

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