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

 

 

Icelady
Experience about Tagrisso

Dear Clark,

my name is Martina, I am writing from Germany.

I am still looking for further patients who suffer adeno lung carcinoma stade IV, treated with Tagrisso 80mg. But it seems that in Germany only few patients exist and they don´t write in any forums.

I had a check after taking Tagrisso for three months and my CT showed a regression of the tumour and as well of the lymphangiosis, covering my whole lung before.

I would be happy to read about your experience and of course I hope that you are feeling well.

Many greetings,

Martina

DReed
Stage 4 with Tagrisso

Hello Martha,

My name is Diana and I've been on Tagrisso  80 mg. for 6 weeks. This is my first forum post. I'm 57 years old and never smoked. My cancer is considered a stage 4. I've been doing really well with the Tagrisso. The side effects haven't been bad at all.  So far my blood work has shown a small shrinking in my tumors. I'm going to the doctor today so I'll get some more information. I hope to hear back from you. It would be helpful to know someone else going through this. Where do you live in Germany? I've been there a couple of times. I live in Texas. Stay well, Diana

JanineT Forum M...
Hi Martina and Martha,

Hi Martina and Martha,

 

Welcome to Grace.  It's great that you both are doing well on tagrisso.  It's comforting and helpful to have others who are going through the same thing to talk to.  Martha, I hope you get nothing but good news today.  Keep us posted.

And if either of you have questions don't hesitate to ask.  I will always call on Dr. West or another of our faculty for input.

 

Take care,

Janine

Zamfirmadalina6...
Hello

Hello !!! I need some information too !! My brother has malignant melanoma and we need Osimertinib. The doctor definitely recommended it, having the T790M mutation ... it's urgent. Do you know anyone who has taken or is taking this medicine? Maybe someone (who took it and now doesn't need it anymore) can donate a box for a start ... it's not settled and it's very expensive.

JanineT Forum M...
Hi Zamfirmadalina, Welcome to

Hi Zamfirmadalina,

 

Welcome to Grace.  I'm so sorry your brother is going through this and hope he is able to get the meds he needs.  I've wondered where all the unused drugs like osimertinib end up.  The pharmas don't take them back and but I wonder what the pharmas and doctors tell people when they call and ask what to do with the leftovers.  They are so expensive!  I wonder if I would call the pharmas and ask that question (like I had leftovers), just to get an idea of what might be happening to all these drugs.  The problem with that is you wouldn't know what you were really getting.  If you're in the US you can call a drug assistance program.  In areas of the world where there are no drug patent laws, the drug Tagrix is a reputable generic sold at a much lower price than Tagrisso.

 

I'm sorry I'm not much help. 

Best of luck,

Janine