EGFR Exon 20 Insertion NSCLC Progression Question

[SATo]

My husband (80) who has had fairly stable Stage III CKD for years, was diagnosed with NSCLC then stage IIB at the end of Dec 2022.   His initial scans showed no mets anywhere.  Had surgery and adjuvant chemotherapy (carboplatin/pemexetred) beginning to mid 2023 and had NED until a follow-up CT scan three weeks ago showed mets to lymph nodes, liver and bones.  His original tumor pathology noted adenocarcinoma with genetic markers which were EGFR with the apparently less common Exon 20 insertion mutation.  Given that his cancer is now progressed, he was told that his cohort group usually have about a year to live.  

They tried qualifying him for a Furmonertinib Clinical Trial (we are in Canada and Amivantamab is not covered under our health plan because it costs $10,000 a cycle and a cycle is every 2 weeks when you are on it and it was deemed as not adding any significant improvement for the cost).  Unfortunately, he could not qualify for the Furmo trial (assuming its a similar type of med) given his eGFR kidney scores (despite an IV flush regimen which improved the score but not enough).  

Since not qualifying for the trial, he has just started chemo (carboplatin, paclitaxel and ketruda), which he is tolerating so far, knock on wood.  The oncologist is going to re-scan him after the end of the third 21-day cycle (roughly three months from now) to check on state of further progression.

The questions I have are about pace of progression.  Right now my husband has zero symptoms.  He has no mobility restrictions.  Nothing.  It's like standing in a dry riverbed knowing that the dam down the way is definitely about to bust.  We are in a state of perpetual 'bracing' for the inevitable deluge and it affects the now, which is precious at hte moment.

I am curious about those in the same situation or who may have family members in similar situations.  What has been your experience?  When do the effects of the mets (liver or bone or perhaps eventual brain mets) present.  He is experiencing a great deal of anxiety right now, from my observation, because he is waiting for the next shoe to drop.   I've gotten his oncologist to refer him to occupational therapy (she's seen him already) and a oncological psychiatrist (appt. pending) to assess him for any therapies or medications to help him deal more easier with his fears/anxieties.

He asked his oncologist and was told that no doctor could provide him with an accurate answer about that.  That may be true, but perhaps some of you may have some anecdotal evidence based on your experiences.

 

[edivebuddy]

Sorry you guys are faced with this.   I just makes me so mad when I read about treatments being denied because of cost.  My least favorite term in American cancer treatment is financial toxicity.   Had I been diagnosed in most countries that deny treatments for cost I'd be dead!  Instead they've dolled out millions keeping me alive for over 4 years. 

Your doctor is right and not trying to dodge a hard question.   Nobody really knows.   Everyone is so different.   The best they can do is just give a prognosis. And then you have no idea where as an individual patient will fall.  My prognosis was 4 to 6 months with a 2 year survival chance of zero percent.  I'm an extreme example but mine stopped where it was with carboplatin and Taxol (Paclitaxel).  It completely reversed course with keytruda.  I'm in complete remission to this date.

I had mets to my liver, lymph nodes, skin ,  neck, and brain. 

I did not have an exon 20 mutation.  Do you know the exact mutation to exon 20?

A763_Y764insFQEA responds better to TKis.  

Though I can't give even a hint of when or even if the other shoe will drop.  I know lung cancer can ve beat no matter how advanced.   And my best way to deal with anxiety while awake is to stay busy .  Xanax helped while I could not sleep. 

 

 

 

[Tom Galli]

SATo,

What is the rate of progression? I went from NED post-thoracotomy to progression of 3 tumors in my left lung in about 4 months. As has been said, "nobody really knows." Fortunately after progression to stage IV, I achieved NED (no evidence of disease) with a mix of Taxol and Carboplatin chemotherapy and precision radiation in about 3 years of treatment. From my 20 years of living with this disease and interacting with many survivors, I believe that once progression starts, things start to go downhill rapidly. I wish I had a better answer.

Stay the course.

Tom

[tgif i guess]

strange that they did not start keytruda with his first chemo.  i had no surgery but started with carboplatin/pemexetred (chemo) and keytruda (immuno).  took me from lung/lymph nodes/bone to clear scans in about 6 months - then they dropped the carboplatin.  i have been clear for over a year while continuing with pemexetred/keytruda.  like him, i tolerate the treatments well.

one doctor told me if there is a cure for cancer found, it will be through these immuno drugs.  

On 9/7/2024 at 10:04 AM, SATo said:

The questions I have are about pace of progression.

there might not be any progression.  try not to assume there will be progression.  not easy, i know.  at least try not to participate in his assumption that there will be progression.

On 9/7/2024 at 10:04 AM, SATo said:

It's like standing in a dry riverbed knowing that the dam down the way is definitely about to bust.

you don't know if the dam is about to burst.  you don't even know there is a dam.  so grab your walker and get your 'dam' butts out of the riverbed.

80 and tolerated the chemo well.  that is remarkable.  the keytruda addition might be the thing that works for him.  it might be what has worked for me so far.  we are so blessed that our cancer fight has been easier than so many others.  we are relatively free from the worst treatment side effects.

i know you are asking what to watch for 'next'   i can't answer that.  i am hoping you can focus on the hope of keytruda. 

my first step out of the riverbed was optimism and (like edive said) staying busy.  start with washing the riverbed dust off and replacing those tennis balls on your walker.  they have a lot of miles on them and its time for a retread.  

[Karen_L]

On 9/7/2024 at 8:04 AM, SATo said:

usually have about a year to live.  

I hate when people get these numbers presented as "usual." A dear friend of mine was given 6 months to live; 16 years later, he was writing books and digging up his backyard on a landscaping project. I'm not trying to tell you not to worry-- another survivor once told me that living with lung cancer involves the impossible task of accepting the constant awareness of death while simultaneously living a the richest life our condition allows. The hardest work for me was learning to cope with the grief and anxiety of the diagnosis. You have done all the right things in connecting your dear one with other services. Hang in, and keep us posted.

[SATo]

Thanks for all your kind responses.  Except for some mildish peripheral neuropathy (tingly fingers/sore feet), so far he's doing okay on the Carboplatin, Paclitaxol and Ketruda.  He/we are calming down a bit but the anticipatory grief thing is still an issue.  Comes and goes.  Got myself on a waiting list at Gilda's House for a cancer caregiver support group and he is awaiting connection with the oncological psychiatry intake .   Focussing on visits with his kids and doing day to day things as much as we can.  

Re the question about the Exon 20 mutation, it is the one EGFR mutation that does not respond to TKIs so they can't use them to treat his cancer.  We are carrying on hoping that the current chemo regimen will halt further progression.  Hs a scan re-check in 2.5 to 3 months, after the third cycle to confirm. Hopefully the peripheral neuropathy doesn't get too bad.  Right now its manageable.

[edivebuddy]

Paclitaxel  is notorious for peripheral neuropathy.   Carboplatin as well.   I had it in my hands and feet while on Paclitaxel and carboplatin.   Just my feet with carboplatin alimta and Keytruda.  Still have it 4 years later.   Cold therapy gloves and socks can help.  As can vitamin e.  Talk to his oncologist about them.

Health Canada approved Amivantamab on July 3rd.  Hopefully it gets funded  soon by Ontario  health.   

Don't know if it helps  but Amivantamab was initially approved in the US may  21, 2021 and covered by Medicare in October 2021.

There are 104 unique EGFR exon 20 insertion variants .  A763_Y764insFQEA and D770delinsGY  happen to respond to TKIs better than the rest. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9679652/

Good luck to you guys.   Is Sato your name?

 

[SATo]

Thanks for the heads up about the cold therapy gloves and socks/vitamin e for dealing with his peripheral neuropathy.   I'll talk to his oncologist about them.  

Unfortunately, my husband doesn't have the type of exon 20 insertion mutation that respond to TKIs.  

Thanks, too, for the well wishes and optimism.