EGFRm (+) but also positive for additional copies of ALK and ROS1 gene

[Joycecotton]

Hi all, 

I'm new here. I am 39 years old recently diagnosed with adenocarcinoma. Know from my doctor that I'm EGFR positive with exon 19 deletion which the doctor has put me on Tagrisso for treatment. Today is my day 1 on Tagrisso. 

In my pathology report, I also noticed that I'm negative for ALK or ROS gene rearrangement HOWEVER: 

My report states I'm "positive for additional copies of ALK gene" in 48% of the cells and "positive for additional copies of ROS1 gene" in 47% of the cells". It also specifically comments that "ROS gene copy number gain (CNG) was significantly associated with shorter disease-free survival and shorter overall survival than the group without CNG. Additional copies of ROS1 gene is an independent poor prognostic factor. "

My doctor didn't go over all these details with me at any of our office visit and I was only told I'm EGFR positive. I don't get to see my path report until today, which is 1.5 month after the office visit. I feel like I'm missing an important piece of information on my path report. 

Does anyone know any additional information? 

Thank you in advance! 

Best, 

Joyce

[BridgetO]

Hi Joyce and welcome. I can imagine it was disconcerting to get that additional information a month and a half later!  I don't have any information about the significance of additional copies of ALK ans ROS1 genes. I don't recall anyone on these forums writing about having those, but there are a lot of things I don't remember. So stay tuned and maybe someone will know. In any event, I recommend that you talk to yoour oncologist about this as soon as you can. He or she should be able to give you a clear explanation-- I'm surprised they haven't already. Hang in there and keep us posted. 

Bridget O
lll

[TJM]

You might want to post this on the New Members site. I'm guessing you will get some responses. From what little I have picked up it's the EGFR and PDL that matter most.

Unfortunately, I have a "perfect" tumor. No mutations.

Peace

Tom

[Joycecotton]

Thank you so much Bridget and Tom for your replies! 

[Tom Galli]

Joyce,

Welcome here. Your question involving Gene Copy Numbers (GCN) is way beyond my ability to address. I've sent it to members of our science advisory board for explanation. I hope I can promptly get an answer.

Stay the course.

Tom

[Tom Galli]

Joyce,

While not delving into the complexity of GCNs, a notable member of Lungevity's Science Advisory Board responded to your quoted text in your post. Here is the response: "Tagrisso would still be my drug of choice here, no question!  Every patient is different, and there are many factors that may influence the duration of benefit on Tagrisso.  Her fate is not written in this path report!!"

Stay the course.

Tom

[Joycecotton]

Thank you so much Tom for your reply! That gives me lots of confidence in continuing with Tagrisso!

[LexieCat]

I don't have any targetable mutations, but I do know that when I got my NGS report there were mutations noted that were common and known to affect cancer, but had no targeted treatment. So these might fall into that category. I've found doctors tend to want to talk about only those mutations they can do something about. 

And the survival stats I'd take with a grain of salt, too, remembering that they generally represent averages, not necessarily what I'll experience. As the experts noted above, every patient is different. 

[Judy M2]

52 minutes ago, Joycecotton said:

Thank you so much Tom for your reply! That gives me lots of confidence in continuing with Tagrisso!

Joyce, you have every reason to be confident taking Tagrisso! And remember that you are not a statistic. Keep telling yourself that. We are so lucky to have this targeted therapy.