EGFR mutation - p.747_P753delinsS(exon19) - current treatment Osimertinib (Tagrisso)

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clarkwagner
EGFR mutation - p.747_P753delinsS(exon19) - current treatment Osimertinib (Tagrisso)

Is there anyone else that has this same specific rare cancer gene mutation? This is the first identified mutation for my Non-small cell adenocarcinoma lung cancer.  I would be interested in any treatments or other experiences you are having.  My current treatment is Tagrisso at 80 mg.  After 8 weeks of treatment I had a 60% reduction in the malignant mass in my right lung.  No notable change in pleural lining mass.  Thanks 

JanineT Forum M...
Hi Clark, Welcome to Grace. 

Hi Clark,

 

Welcome to Grace.  We do put a hold on new threads to help weed out spam and bots.  But adding posts to threads shouldn't be a problem. 

 

I'm very sorry to know you're dealing with lung cancer.  It sounds as if you're doing very well on tagrisso. Congratulations!  And hopefully, it will continue to work for a long long time.  It's known that the exon 19 deletion responds well to TKIs but the specific subtypes such as your p.747_P753delinsS haven't been studied enough to have any effects on treatment choice or even to tell us much on what to expect.  From a search on clinicaltrials.gov I didn't see any trials related to those subtypes.  Maybe by the time you need a change there maybe something more known about them or a trial to consider. 

 

When you look at info on the subject you'll want to look for Exon 19 deletions and exon 21 L858R substitution (or exon 19 and 21)(or just egfr).

 

We have lots of information on lung cancer in general and egfr mutations.  Our older forums have a plethora of info of a supportive nature.  Look for videos on our youtube channel or ask for help here.  Dr. West, Grace's president and creator also has a site, beaconmedic.com. 

 

Grace is set up to answer and comment on specific issues but doesn't have a large posting support community.  Forums such as Lungevity and Inspire have large support networks that you might try. 

 

I have not had cancer but my husband did and I have only guessed at what that must feel like.  It's good to know you're responding so well (responders respond) and know that you have options should you need them. 

 

I hope you do well.  Don't hesitate to ask when you need to or please do keep us posted.  You never know when your questions, experiences, and comments will help someone else. :)

Janine