EGFR+ stage 4

[Whatnow]

Hello All,

my dad has been diagnosed with stage 4 NSCLC EGFR+ .

We found out last Christmas 2020 and then he went on chemotherapy and immunotherapy which worked so well it almost looked like the cancer was gone. Then only 3 months later it is back (we found out this week).

I would really like to know, is there a chance there are better results with a second course of treatment? And that just because it’s back all is not lost. I do understand that everyone is different, and he has a rare type. 
 

thank you

[LouT]

Hello.  Sorry to hear about your father.  Recurrence is tough, but, unfortunately, a terrible feature of LC (lung cancer).  My own treatment was surgical-only so I cannot speak to chemo and immunotherapy.  But, there are others here who have gone through this and will soon be responding to your post.  So please be patient.  In the meantime if you would like to look at a section of our forum focused on EFGR+ folks you can find that here.

Lou

[Judy M2]

There are a number of subtypes of EGFR lung cancer, and for some of them immunotherapy isn't particularly effective. For example, Osimertinib (Tagrisso) is the standard of care for Exon 19 deletion. For Exon 20, there is another (new) targeted therapy. A rare subtype is Exon 25, which I don't know much about. 

Can you tell us what his subtype is? 

[Whatnow]

15 minutes ago, Judy M2 said:

There are a number of subtypes of EGFR lung cancer, and for some of them immunotherapy isn't particularly effective. For example, Osimertinib (Tagrisso) is the standard of care for Exon 19 deletion. For Exon 20, there is another (new) targeted therapy. A rare subtype is Exon 25, which I don't know much about. 

Can you tell us what his subtype is? 

Hi Judy, many thanks for getting back to me. Unfortunately the cancer did not improve with Tagrisso and we were so hopeful that would work. Two mutations have been detected, I believe one is Exon 16 and other I am unsure, making the combination uncommon. TTF-1 positive. I will find out the specifics. 

He will now be start carboplatin and paclitaxel for round 2  

Ideally I would like to know that for someone out there, their second course of treatment managed to keep the cancer at bay for longer. We had such amazing results the first time, and it was so devastating to hear that the cancer returned just after 3 months which leads me to believe it’s aggressive. I am aware it’s down to the individual, I just need some hope. 

[Whatnow]

2 hours ago, LouT said:

Hello.  Sorry to hear about your father.  Recurrence is tough, but, unfortunately, a terrible feature of LC (lung cancer).  My own treatment was surgical-only so I cannot speak to chemo and immunotherapy.  But, there are others here who have gone through this and will soon be responding to your post.  So please be patient.  In the meantime if you would like to look at a section of our forum focused on EFGR+ folks you can find that here.

Lou

Thank you Lou, I will definitely explore the EGFR+ specific forums for further advice. Appreciate you getting back to me. 

[Judy M2]

I don't think I've even heard of Exon 16. You may want to check out the private Facebook group EGFR Resisters Lung Cancer Patients Group and ask your question. They're a great group with a long reach. 

I had 6x chemo (carboplatin and paclitaxel) along with 30x radiation for my first-line treatment and then started Tagrisso in March 2020. Everything has worked for me, thankfully, but I have the more common Exon 19 deletion. 

The Dana-Farber Chen-Huang Center for EGFR Mutant Lung Cancers in Boston, Massachusetts is the foremost authority on EGFR lung cancer. I don't think they are doing virtual consultations any longer but it might be worth a try. 

[Whatnow]

Thank you for your time. Unfortunately the centre in Boston will only see you in person and we are UK based but we have an excellent oncologist who consults with others regularly. 

Found out today it has metastasised to the brain (2x 5mm) and they will begin radiotherapy soon and his second round of new chemo treatment to treat the recurrence.

all is not lost yet. 

[Karen_L]

I'm a carbo-paclitaxel person. I was given a drawerful of anti-nausea meds and needed to use only one. The method for me-- taught by a wise oncology nurse--  was to get ahead of the nausea; once I started, I just took the medicine as prescribed.  

After a ton of reading, I've concluded that one of the characteristics of stupid lung cancer is its sneakiness, and it seems especially to love to travel to the brain. The trick for me is to not let this persuade me I should just give up the hope of creating and maintaining a wonderful life. Too many people are showing me otherwise. 

Hang in,

Karen

 

[Whatnow]

58 minutes ago, Karen_L said:

I'm a carbo-paclitaxel person. I was given a drawerful of anti-nausea meds and needed to use only one. The method for me-- taught by a wise oncology nurse--  was to get ahead of the nausea; once I started, I just took the medicine as prescribed.  

After a ton of reading, I've concluded that one of the characteristics of stupid lung cancer is its sneakiness, and it seems especially to love to travel to the brain. The trick for me is to not let this persuade me I should just give up the hope of creating and maintaining a wonderful life. Too many people are showing me otherwise. 

Hang in,

Karen

 

Thank you Karen for taking the time to get back to me. I really appreciate your point of view, and I have forwarded your advice regarding nausea as my dad has experienced the same with this combo, which surprised him as it was not the case for the first round of platinum chemo. At first dad was convinced that reaching the brain meant that there was no getting better, however he now has a positive spirit about beating these small legions. Radiotherapy soon!