Multiple EGFR mutation lung cancer

Sat, 09/02/2023 - 16:09
happybluesun
Posts:3
n/a
Dear GRACE, In 2020, my mom was diagnosed with right lung adenocarcinoma, which led to her undergoing surgery. Unfortunately, the cancer had spread to her left lung by 2021, requiring another surgery followed by four cycles of chemotherapy. Both instances of the cancer were identified as having the EGFR exon 21 L858R mutation. In April 2022, a new development occurred as the cancer metastasized to her right clavicular lymph node. To address this, she was prescribed Tagrisso for three months. However, the response to this treatment was not as favorable as we had hoped. As a result, radiotherapy was pursued, yielding a positive effect. As of June 2023, a PET/CT scan revealed an unsettling progression of the disease. Multiple lymph node metastases were detected in various regions, including bilateral clavicles, mediastinum, both lung hilums, behind the diaphragmatic foot, abdominal cavity, and retroperitoneum. Genetic testing uncovered the presence of several EGFR mutations (exon 21, exon 20) within the EGFR gene, along with a TP53 mutation. Given the complexity of these multiple EGFR mutations, I have reservations about the potential efficacy of further targeted therapy. I am reaching out to seek your insights on the recommended course of treatment at this juncture. Additionally, I am curious if you are aware of any other patients who have encountered similar cases and what approaches have been explored in those instances. Your guidance and support would mean a lot to us during this challenging time. Thank you for your attention and assistance
wei sun
Forums
Stage IV NSCLC

Reply # - September 3, 2023, 04:44 PM

JanineT GRACE …
Posts: 570
GRACE Community Outreach Team

Hi happybluesun,  Welcome to Grace.   I'm sorry your mom is going through this. 

 

Driver mutations are mutations that drive (or cause) the cancer.  Having more than one driver mutation is quite rare and not well understood and may be where TP53 comes in.  That is why getting a consutation with someone at an academic institution that has a "molecular tumor board" will likely be the best place to put together the best plan for your mom.  Can a Patient Have Multiple Mutations & How to Treat?  is a video covering the topic. 

 

Tagrisso is the obvious current treatment for egfr exon 21 and that has been tried (3 months is usually long enough to see benefit but not absolutely always).  The other targic is exon 20 which has been more difficult to treat.  Here is a link to exon 20 search results from our video library; I'd stick to the videos created in the last year.  Specifically, Sunvozertinib shows great promise but isn't FDA or CDE approved. However, it was given a special designation in both China and the US that will/should help get to the answer about whether it is as good as it appears to be.  So while your oncologist can't prescribe it it may be worth looking into a trial.  Academic settings are also the best place to find appropriate trials. 

 

If you have questions about getting a 2nd opinion or consult this is the article to read.

I hope this helps.  If you have more questions don't hesitate to ask. 

 

Best of luck,

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 # - September 14, 2023, 06:46 PM

happybluesun
Posts: 3
n/a
Hi Janine, thank you very much for your reply. As of June 2023, my mom has been prescribed Almonertibi Mesilate Tablet, a targeted therapy medicine made by the Chinese company Haosen Pharmaceutical because her cancer has spread to various regions. The recent report shows no obvious results from this treatment, plus my mom has experienced serious side effects. The doctor told her to stop the current medication and switch to immunotherapy RIGHT WAY. The immunotherapy formula is TECENTRIQ® (atezolizumab)+ Bevacizumab+ Albumin-bound Paclitaxel (Nab-paclitaxel) +Carboplatin. I was informed by a prominent US doctor that immunotherapy and targeted therapy drugs should not be used concurrently. There should be a few months' gap to allow the targeted therapy drugs to clear from the bloodstream; otherwise, there could be life-threatening side effects. I have told my mom not to start the immunotherapy formula until I receive confirmation from the U.S. side. In China, the formula TECENTRIQ® (atezolizumab) + Bevacizumab + Albumin-bound Paclitaxel (Nab-paclitaxel) + Carboplatin seems to be a last resort, used when all other methods have been tried. Unfortunately, most patients experience very serious side effects. A friend's mom received this treatment for two months and her health destroyed significantly. I am deeply concerned about this new treatment plan, and your guidance and support would be greatly appreciated. Thank you very much!!

wei sun

Reply # - September 15, 2023, 03:10 PM

JanineT GRACE …
Posts: 570
GRACE Community Outreach Team

Hi happybluesun, How is your mom feeling?  Her case has specific components including the rare combo of mutations situation we can't help with a specific "this is standard of care".  She may be eligible for a clinical trial, local therapy, or the combo her docs have planned may be best. because of her rare set of mutations and lack of benefit from TKIs, it may make sense to try this triplet of treatments.  everything you need to know about targeted therapies...let me know if i can help

 

There is an issue with sequencing TKI after immunotherapy/CPI.  Often, people develop dangerous lung inflammation when taking TKI after they've taken immunotherapy.  We don't know why yet.  So it's best to use up all your possible TKI options before moving on to immunotherapy. 

 

The triplet of chemo, Bevacizumab, and tecentriq could work very well and it's possible the side effects won't be too harsh.  However, chemo and immunotherapy each have side effects that can be harsh and together they are compounded.  She won't know until she tries how she responds.  A couple of notes on side effects.  Nab-pax is noted for the neuropathy it can cause.  Most people with adeno find pemetrexed to have fewer side effects than a taxol and anecdotally pemetrexed seems to have better outcomes.  on chemo immunotherapy

Whatever her plan she can always change course to suit. It's a difficult time trying to balance harm and benefit when so little is sure.  Listen to your mom's nurses, and encourage her to ask the chemo nurses and oncologists' nurses for help or input for managing side effects so to live life a bit.  

 

I hope some of this is helpful and don't hesitate to ask for clarification or whatever.

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 # - September 17, 2023, 10:55 AM

happybluesun
Posts: 3
n/a
I agree with you that we should explore all possible TKI options before switching to another one. When you mention 'TKI options,' are you referring to various brands produced by different companies? Additionally, can different targeted therapies for exon 20 and exon 19 & 21 be taken concurrently? Thank you very much for your reply!

wei sun

Reply # - September 17, 2023, 02:43 PM

JanineT GRACE …
Posts: 570
GRACE Community Outreach Team

Yes, all of the brand-named drugs are different drugs.  Each drug in a generation of drugs is similar in makeup but usually quite different in efficacy and side effect profile.  I'm talking about the FDA (US) and MNPA(China) approved drugs.  Not all countries abide by these patent rules and manufacture generics of these drugs which are sold as being the same thing as the patented drug.

 

I am not aware of people trying 2 TKIs concurrently.  In any case, the exon 20 TKIs are sequenced after platinum doublet chemo.  The side effects of taking 2 TKIs may be too harsh. 

 

As I've said before, a consultation with a specialist at an academic center with a specialty in lung cancer and even Targeted therapies along with all of your mom's individual info would be much more helpful at answering this question.  One question I would have is about taking chemo (alimta/carboplatin) without immunotherapy so to leave room for the possibility of taking another TKI such as sunvozertinib if you're in China it was just approved for after platinum chemo.

 

I hope this is helpful.

All the best to you and your mom,

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.

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