Introducing myself

[A7S]

Hi all, my husband was diagnosed with Stage IV NSCLC in April 2021.  It was very unexpected as he has never smoked, very fit, in 40s, and rarely ever sick.  Went to see doctor because of heartburn only to find weeks later cancer rampant throughout his body and in pancreas causing the stomach issues.  He has been taking Tagrisso for past 7 months which was working well but in checkup last week received news it is no longer working based on new growth in lung in CT scan.  Still waiting to get PET and MRI of brain to see if growth in other areas - (why does it take so long to schedule these tests?!   Apparently Plans B, C, and D are all dependent on results.  Looking for positivity and hope.  Praying for strength and a cure and taking time to be grateful for the time we have together.  If anyone has any pointers or suggestions would greatly appreciate them.  I am learning each person is different and it is hard to generalize in dealing with this but really appreciate any input.         

[Judy M2]

Hi and welcome. I'm sorry your husband has had progression on Tagrisso. You didn't mention which EGFR mutation your husband has.

In our private LUNGevity Facebook groups, many members have posted about their experiences with progression on Tagrisso. As you note, there are options that his oncologist will discuss after all the test results come back. 

I assume one of the tests will be either a liquid or tissue biopsy to determine if his genetic mutation has changed. That is pretty standard practice these days. 

Please let me know if you'd like links to the Facebook groups. It may help you to know what treatments others are having. 

This is a difficult time for you, and the waiting is terrible. Try to take things one day at a time as you wait.

[CH29]

This sounds identical to my story as far as the background, except our journey just started last month at diagnosis.  I am finding my role is cheerleader and keeping the mood positive around my husband and kids, as they seem to feed off of my mood.  I don't have anything to offer as far as Tagrisso but I did want to tell you to please stay strong and hopeful, I have read some really uplifting stories on here and elsewhere that encourage me up when I am struggling mentally.  

[A7S]

@JudyM2 thank you so much for the reply - I am still getting used to all of these details - he has EGFR deletion 19 mutation.  Appreciate if you have can share the FB group.  It has been a lonely journey up to this point and I am so thankful to find this community.  I know each person is different, but it does help to hear others experiences and talk to people who understand what this is like. 

 

@CH29 - Thank you so much for sharing.  I am with you - cheerleading our two kids - 12 and 16 which forces me stay strong and focus on the positive.  Appreciate your encouragement, I wish I would have found this community and reached out at initial diagnosis.  Stay strong and let's help our husbands through this!     

[Judy M2]

Here are the FB groups you might find helpful, they are easy to join:

https://www.facebook.com/groups/2098822473719352/?ref=share

https://www.facebook.com/groups/EGFRlung/?ref=share

https://www.facebook.com/groups/EGFRResisters/?ref=share

You'll probably find the EGFR Resisters Group most applicable at this point. This is where members post about their next steps, including participation in clinical trials. 

I also have Exon 19 deletion, it's fairly common in our Tagrisso group. There are uncommon EGFR mutations like Exon 20 that has its own Facebook group. 

My story is that I was diagnosed Stage IIIB in October 2019 at age 66. I had chemo and radiation first and then started Tag in March 2020. I've been fortunate to have had a good response to all treatments and have been NED since April 2021. My journey has been tough but I'm happy to have survived this long. 

Hope all of this helps. 

[CH29]

@AS7 Yes, my kids are 13 and 17 so we are in a similar situation.  It's comforting to find someone else in the same boat.  Take care and please keep us updated!

[A7S]

@Judy M2 Thank you so much for the links.  I will be sure to check this out.  The doctors give as much information as they can but it is encouraging to hear others stories and know that there is life after progression.

 

@CH29 Wow, so crazy how our kids are so close in age.  I would not wish this on anyone but it is comforting to find others who can relate.  Will keep you all posted - as I'm finding on this journey, it seems to take a lot of time and tests to figure out next steps.  Trying to be patient.