Hello, my father has stage 4 NSCLC (exon 21 L858R mutation) with metastasis to his brain. His first treatment was with Tagrisso, which worked wonderfully for about 2 years before it started to wear off and then ensued a whole flurry of treatments that we've tried.
His history of treatment:
1. Tagrisso, worked for about 2 years with no presence of tumor cells in his spinal fluid before lung tumor showed growth in size and metabolic activity, increased coughing but no further worsening neuro symptoms though
2. targeted laser radiation therapy for about a month, seemed to have stabilized it for a month before it wore off too 3
3. Gilotrif, seemed to work for about 3 months only before her neuro symptoms started to get worse, size and metabolic activity of lung tumor seemed unchanged though
4. intrathecal Methotrexate injections via lumbar spine injections for about 14 weeks, lumbar punctures showed persistent presence of tumor cells in spinal fluid, no improvements for neuro symptoms
5. Tarceva for about a month, showed no improvements
6. back on Tagrisso for retreatment, seemed like it was doing okay for the first 1-2 months but steadily showed increasing CEA markers despite all PET/MRI scans showing stable metabolic activity
7. currently on Lazertinib for about 2-3 weeks, no signs of improvement if anything worsening neuro symptoms but no increased coughing
He has an appointment with his oncologist in 2 weeks and I was wondering if anyone has any advice or suggestions before we meet with his doctor? I don't remember if they've done a recent repeat biomarker testing of his tumor yet so I will ask. Are there any other particular questions or labs or treatments we haven't already tried that we should ask about? Thank you.
Reply # - November 10, 2024, 11:56 AM
Hi elysianfields and welcome…
Hi elysianfields and welcome to Grace. I'm sorry to hear about your father's progression.
Unfortunately, lepto remains a difficult area to treat. Recently FDA approved the combo Lazertinib and Amivantamab as 1st line treatment. However, I imagine insurance would approve the combo for later-line treatment too. This is something to discuss with your father's team. Also, there are ongoing trials that combine lazertinib with other drugs depending on the mechanism of resistance causing progression. Here is a video discussing this. Note that the combo lazert and amivent have subsequently been approved since the recording.
There very well may be a reason why treatment changes were made other than CEA numbers but, normally changes in treatment for advanced nsclc are not made when there are no clinical changes such as CT scan or worsening symptoms.
I know for your father Dec. 14 is a ways away but we are presenting our annual OncTalk for Lung Cancer on that day. Check out the details at the top of our homepage.
I hope your father finds relief soon.
Take care,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - November 12, 2024, 04:05 PM
Hello Janine, thank you for…
Hello Janine, thank you for your reply.
Do you happen to know whether it's common practice or if it's worth taking lazertinib without amivantamab? From all the articles I've come across, it's always mentioned with lazertinib should be taken together with amivantamab but my father's oncologist insisted that he doesn't undergo amivantamab because the risks for fatal side effects were too high for him. I'm worried the lazertinib appears as though it isn't working because he's not also taking amivantamab and whether I should push for his oncologist to give him it despite the risks.
Reply # - November 13, 2024, 11:39 AM
Hi elysianfields, That's…
Hi elysianfields,
That's not a question we can answer. It depends on the individual's health. I've linked the study comparing intravenous vs. IV infusions of the doublet lazertinib and amivantamab. As long as I feel the study is well designed and accepted I don't normally read through an entire study but instead look at results and conclusion sections. Here, look for the safety section and note that almost everyone had adverse events/side effects and a lot were serious/grade 3 events. Also note that all the participants entered the study with an ECOG score of 0 or 1. (An ECOG performance status (PS) score of 0 means a patient is fully active, while a score of 1 means the patient is restricted in strenuous physical activity but can still perform light work).
I'm not suggesting you shouldn't have a discussion with his oncologist but I am suggesting that there may be good reason to believe the possible benefits wouldn't outweigh the harm. This is a delicate balance without a playbook and at some point the best answer is to say no to continued anticancer treatment and move to comfort care. I'm sorry that your father is in this position. He's lucky to have you in his corner. Part of being an excellent oncologist is knowing the person's health and intentions and making recommendations based on the individual.
With that said, this is a worthy short read about 2nd opinions. Today most clinical research oncologists who practice a large academic centers offer to do consultations online so you don't have to travel. Even if they just agree with the local onc you have that second independent head in play and they are willing to answer any questions you have.
Take care,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.