HER2 Amplification NSCLC – Anyone Accessed HER2-Targeted Therapy Outside Trials?
Hi everyone,
I’m looking for advice or experiences from anyone dealing with HER2-positive non-small cell lung cancer, particularly HER2 amplification rather than HER2 mutation.
My dad has advanced NSCLC with HER2 amplification/overexpression and unfortunately has not responded to chemotherapy or immunotherapy.
He has also developed brain metastases and there is suspected prostate cancer as well, which we have been told makes him ineligible for most clinical trials.
His oncologists have now told us there are no further treatment options available on the NHS.
What makes this especially difficult is that my dad is otherwise very healthy and fit. He has always been an avid runner and remains strong despite everything happening.
We have been trying to explore targeted therapies, compassionate use, private access and clinical trials, but keep hitting the same wall because most of the newer HER2 drugs appear to only be approved or studied for HER2 mutations, not HER2 amplification.
Access pathways seem incredibly limited for amplification patients compared to mutation patients.
Has anyone:
- Successfully accessed HER2-targeted treatment for HER2 amplification NSCLC?
- Gone abroad for treatment?
- Had any success with compassionate use programs?
- Found any private oncologists in the UK or abroad willing to take on complex cases without insurance?
At this point we are just trying to make sure we have explored every possible avenue.
For context, we are in the UK and my dad does not have private medical insurance. We have recently started trying to raise funds because we know private treatment will likely be extremely expensive, but honestly we don’t even know where to go or who may be willing to help.
Any advice or shared experiences would genuinely mean a lot.
Thank you 🙏🏽