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

Rowan
EGFR+ exon 19

Hello, 

my mother is suffering from the same mutation. She had a primary lung tumor, two lymph nodes on the same side and a 1.2cm brain lesion. She was given srt for the brain lesion and was put on tarceva. Two months later she did a pet scan and the brain lesion has not shown up, the lymph nodes have reduced in size and the primary tumor is 'not showing activity' said her doctor. 

However her new oncologist has changed her medication to tagrisso (5 days ago) saying its better than tarceva and there is only a 50% chance of tagrisso working after tarceva. I am worried that this might be a mistake. Ive read some "GioTag" study saying afatinib followed tagrisso allows for the longest overall survival on targeted drugs for egfr+ exon 19 deletion patients.

Can someone please advise me whether sequential afatinib and tagrisso is better for long term survival? Apparently there are no options after progression on tagrisso besides chemo. Immunotherapy doesnt seem to work for egfr patients according to the doctor. 

Regards

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

Hi Rowan,

 

Welcome to Grace.  I'm very sorry to hear about your mother's diagnosis.  Today the standard of care would be front-line tagrisso instead of tarceva.  One of the benefits of tagrisso is its ability to reach the brain.  However, there are unknowns about tagrisso following tarceva because at some point tagrisso only benefits those who picked up a T790mutation from using a prior tki (tarceva).   I don't know why her oncologist made the decision to change before your mother progresses, which is the norm.  It could be she hopes your mother hasn't been on tarceva long enough to matter about T790m and instead will get the benefit as if she had started with tagrisso. 

 

Published here almost 3 months ago, Dr. Melissa Johnson describes the FLAURA trial that won tagrisso the front-line setting for those with egfr mutation.  As for the subtypes of exon 19 deletions, I'm not aware of news since my first post on this thread, which is unfortunately nothing.  If you've found something else please let me know in case I need to contact one of our faculty for input.

 

I hope your mom does well for long long time.

Best of luck,

Janine

 

Rowan
Sequential TKIs

Dear Janine, 

please let me know about the study below its called the GioTag study. This drug sequence apparently allows patients the most amount of time on targeted drugs. I recently spoke to another molecular oncologist and he recommends afatinib first. I really dont know what to believe. We got alarmed after her new oncologist changed her onto tagrisso and said if there is progression there is nothing much they can do except chemo. 
 

regards

 

https://www.futuremedicine.com/doi/10.2217/fon-2020-0740

 

 

JanineT Forum M...
Rowan, to play devils

Rowan, to play devils advocate, the first thing that jumps out at me about this trial is to be included you must aready be 10 months into tagrisso.  That means they benefited then progressed on afatanib and are now responding to tagrisso for at least 10 months.  That already assumes a lot about how someone in your mother's current position would ultimately be compared to those in the trial.  Another consideration to think about is that the trial was/is a review of records, so peramaters on how the patients' treatment evolved weren't stringently controlled as if it were a trial such as flaura or lux.   But yes, it is something to consider on an individual basis.

 

Consider that your mother has already started 2 different tki drugs.  We don't know how that would effect the trajectory of the coarse, especially considering 'sequencing' is the question being asked in the gio trial.  There are many promising trials studying drugs/combos/sequencings that could be appropriate for your mother that she could be excluded from if she has taken this or that treatment.  Maybe the most important consideration is about side effects with afatinib.  They can be pretty bad.  On the other hand side effects from chemotherapy, especially alimta, can be very mild, has high efficacy for efgr exon 19, and can be effective for long period of time. 

 

The point being, there are a lot of unknowns about sequencing afatinib first for egfr exon 19.  Many oncologists who consider this regimen weigh how well a person can manage the side effects of afatinib compared to its possible benefits.  Tagrisso on the other hand has a good side effect profile, it has good penetration into the brain and has been shown to improve OS with data from a well recognized study.

 

I know how much you want to get this right.  I've been there (it's why I'm here now).  One of the toughest things about this is there are so many unknowns and it depends.  In the scheme of things using tagrisso front line in someone with your mother's broad profile makes good sense.  Talking to the oncologist personally can help you understand the thought process. 

 

I hope she does well.  Keep us posted.

Janine