NSCLC Stage 4 with Met 14 Skipping Gene

[Maryanne87]

Hi -

I was diagnosed with Stage 4 NSCLC with Met 14 Skipping Gene in November 2022.   I have METS to the bones and liver.  I started on Tabrecta (Capmatanib) in December.  My February scans showed shrinkage in my lung tumor and decreased lesions on my liver.  We were thrilled!

 However, my most recent scans this week; showed increased lesions on my liver; destructive lesion on my sacrum with possible fracture. It also showed new peritoneal metastasis.  A new area of bone cancer in my right rib.  All other bone metastasis showed improvement.

My chest CT scan results are not in at this time.  However; I am really worried and scared that this level of progression in a short amount of time means a poor prognosis.   I meet with my oncologist next week however; she is out this week and I cannot message her.  

I would appreciate any advice you can give me.

Thank you.

 

 

 

[Karen_L]

I have a different collection of mutations and metastases, so can’t offer experiences that would relate to your situation. But I understand the shock and complex feelings that arise with progression.

Your oncologist may be out of town, but they must have a colleague covering for them, or a nurse practitioner or nurse. I would call and ask to speak to them. Even if you preface your request with the statement that you don’t expect solutions, you just need to be talked down…. (We’re all just too damned nice for our own good— we need and deserve this support!)

Absent that possibility, Lungevity and Go2 both have patient connection lines, which may be able to connect you to folks who share your experience. @Tom Galli is this something Kristi could help with? 

What I would tell you is, get your mind firmly in the moment. Take some slow, deep breaths. Trust that the next step will come to you, even via another response here. You will make your way through this, one step at a time. Right now, don’t let your brain tip you into panic. You can do this. 

Sending strength.

Karen

[Tom Galli]

Maryanne,

Welcome here

Oh my, a report of progression after starting a Targeted Therapy for Adenocarcinoma Met Skipping exon 14 is never good news, but there is another Targeted Therapy drug for your form of lung cancer: Tepotinib (Tepmetko®).

Karen's suggestion is a good one. Please email Kristi Griffith, RN (kgriffith@lungevity.org). Kristi is a Lung Cancer Nurse Navigator and she is available to explain alternate therapies that might be available to deal with this progression. You might also ask Kristi about our Lungevity Zoom schedule. We have one at 12 EDT on every Tuesday and this mixture of newly diagnosed with seasoned survivors might help you navigate uncertainty. Ask Kristi for the link in your email.

Karen is right. Don't go to panic.

Stay the course.

Tom