Hope somebody can help me.
Mum diagnosed with stage iv NSCLC in May of last year with spinal meta. Oncologist said she was a prime candidate for pembrolizumab. After 5 treatments oncologist said it didn't work as primary tumour had grown.
oncologist the said that Mum had EGFR Exon18 and that Tarceva would be best option. After 3 months on tarceva Mum now has small mets on brain x 3 and two on liver. Oncologist now says that chemo only option.
i have done some reading which says that the ideal targeted drug for Exon18 mutation is Afatinib and suggested same to oncologist. She doesn't like to be challenged and was dismissive of afatinib as an option stating that side effects would be too severe despite the fact that dosage could be tailored to 20mg to mitigate risk of AEs.
I really believe that afatinib at 20mg is the best option for my Mum. How do I get the oncologist to give this option the appropriate attention.
Thanks,
Paul
Reply # - February 2, 2020, 06:06 PM
Hi Paul, Welcome to Grace. I
Hi Paul,
Welcome to Grace. I'm very sorry that your Mum is experiencing any of this. It is typical to have special circumstances with most any cancer diagnosis. So it's impossible to say that your Mum's next best treatment option is afatinib though on the surface it would seem so. If she had significant side effects from tarceva then it's likely the side effects from afatinib will be worse. Chemo may be a good option. Side effects from chemo have been significantly reduced in the past 15 - 20 years and could be negligible for many people.
To your question. Ask the oncologist to explain her decision-making process. What are the pros and cons of the 2 treatment options? What is the expected difference between the standard exon 18 treatment afatinib and chemo? Giving an egfr inhibitor after being exposed to immunotherapy has caused a significant number of people to develop life-threatening pneumonitis. Communication is key. There might be a good reason to seek chemo now.
If your mum is interested a second opinion from a lung cancer specialist at a large research center is never a bad idea. This is an excellent guide for a 2nd.
I hope this is helpful,
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 # - February 2, 2020, 06:22 PM
Paul, I see your mum has
Paul,
I see your mum has taken pembro. Unfortunately, very recently it has been discovered that taking an egfr tki after an immunotherapy can cause life-threatening pneumonitis. Most oncologists are very hesitant to do that.
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 # - June 5, 2020, 10:52 AM
exon 18
There is a facebook group for exon 18 where the treatment options are discussed : https://www.facebook.com/groups/1954302018017776/?ref=bookmarks
Afatinib seemed to make sense in your situation, but it might not work for brain mets and liver. Maybe stereotactic radiation in the brain and ablation for the liver and
getting on afatinib would be the best option. Tarceva is also effective in exon 18 so maybe new mutations appeared after some time on Tarceva and your oncologist is choosing chemo. Osimertinib could be another option (depending on the resistance mutation)
Reply # - June 5, 2020, 11:01 AM
Hi daxys, How is your mom?
Hi daxys,
How is your mom? Thanks for the fb group link.
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 # - June 6, 2020, 11:51 PM
..
Hi Janine,
mum is doing OK, but experiencing some fast progression in one area now. I posted a question about my mum here 2 days ago, but it got lost it seems. Not really sure how these forums are working. I wanted to ask whether it is OK to start chemotherapy (with carboplatin) when mum is experiencing hemoptysis (mild form). The doctor is not much bothered by this, but I am rather concerned. My mums platelets are not high.
In reply to .. by daxys
Reply # - June 7, 2020, 12:18 PM
Hi daxys, I'll check into why
Hi daxys,
I'll check into why I can't find your new post. Was it from an open thread or a new thread? We need to figure out why that happened.
In the meantime let me see about getting you some insight into your question.
Glad your mum is doing ok.
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 # - June 7, 2020, 02:41 PM
I didn't ask but is your mom
I didn't ask but is your mom still on osimertinib. If so and she has just one place of progression a local treatment like radiation may stop the one osimertinib resistant tumor then she can continue on osimertinib to control the rest of her body. Here's a discussion on oligoprogression.
Otherwise, if your mom needs to change treatment, chemo can have much benefit, even clear the hemoptysis as long as her onc approves, which is pretty common.
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.