EGFR Exon 18 Question - 1293803

scohn
Posts:237

After all the questions that I have asked, I am actually asking one now for a friend. My friend's mother, 76, Asian heritage, out of state, has now been diagnosed with NSCLC adenocarcinoma, EGFR Exon 18, Stage IV - metastatic multiple locations. My friend says the insurance company will not pay for TKI treatment, since they have not been found effective for Exon 18, and is only paying for palliative radiation.

My question is regarding the current state of TKI treatment for Exon 18. I read several articles saying that TKIs are much less effective for Exon 18, but a couple of the articles suggested that one or two of the 2nd generation TKIs (even more than the 3rd ben TKIs), like afatanib, have shown some effectiveness for Exon 18. I just wondered if you had any sense of the current state of thinking for types of treatments used for Exon 18.

Any info that might help my friend discuss this with the insurance company (if indeed any TKIs have shown some effectiveness for Exon 18) would be helpful.

Thanks!
Scohn

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Reply # - January 17, 2018, 02:56 PM

JimC
Posts: 2753

Hi scohn,

There does seem to be an indication that at least some of the exon 18 mutations can respond to EGFR TKI therapy, as discussed by Dr. West and colleagues here. If you have the specific mutation, you can search for it at mycancergenome.org for information on which TKIs might be effective.

JimC
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Reply # - January 22, 2018, 06:31 AM

cards7up
Posts: 635

You'd need the rest of the mutation number such as G719 A, C or S are Exon 18. On mycancergenome, each of these shows increased sensitivity to TKI'S. I'd have your friend get a second opinion at a top rated NCI cancer center if they're in the US. If not, try to get a second opinion wherever they are.
Take care, Judy

Reply # - January 22, 2018, 07:38 AM

scohn
Posts: 237

Thanks everyone! I really appreciate all the feedback!
Judy - Jim - Janine (Is there something about J names that makes people knowledgeable and compassionate?) - I can't tell you what it means to know you all are out there!

It turns out my friend's mother has a very rare insertion/deletion at 709/710, rather than the more common point mutations. Exon 18 mutations are rare enough, but this is an even rarer subset! However, when they spoke to the doctor it appears that they think this mutation also shows increased sensitivity to TKIs and so they are going to give her afatanib, In talking to Medicare, they have been put in the catastrophic case category, so 95% of the cost of the drug will be covered after the first $3500. So, treatment and coverage are now taken care of. Now it's up to the afatanib, as my friend says his mother's cancer is progressing fairly rapidly, and the doctors feel that the afatanib will only be short term relief from the progressing symptoms.

Just one more entry into the "Why I hate Cancer" notebook.

Thanks again!
scohn

PS - a couple more weeks until the next CT scan, but at least for now my wife is feeling great with the gemcitibine.

Reply # - April 10, 2018, 05:07 PM

scohn
Posts: 237

Hi everyone. Just a brief update. I found out today that my friend's Mom passed away last week. She had been given afatanib twice, but my friend said each time he thinks it helped a little for about a week, but then complications (fluid buildup, respiratory problems, etc.) caused a halt to the treatment. Her cancer was widespread and fairly aggressive. With the help of hospice she died peacefully, in the presence of family. It was only 3 Months - so fast.

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