Update on Evan’s Fight Against Cancer

It has been some time since I last updated you all as Evan had been doing well in remission while on Retivmo, a genetic targeted medication for his very rare metastatic Stage 4 Medullary Thyroid Cancer (MTC). Unfortunately, this year after many tests and scans, it was finally determined that his thyroid cancer has returned. This time, it is in lymph nodes in his abdomen (retroperitoneal) and his pelvic region. His oncologist then bumped up his Retivmo to its highest dose and initially, his blood tumor markers dropped. However, after a little over a month, they have risen again. His wonderful oncologist then wanted to switch him to the only other genetic targeted medication that the National Comprehensive Cancer Network (NCCN) states is indicated for his metastatic cancer called Gavreto. Unfortunately, his insurance company, Aetna, has declined this order now twice! We are in full swing to continue to fight this decision as is his oncologist. The reason it is denied by Aetna, they say, is because the manufacturer was unable to complete the third stage of clinical trials of Gavreto, so the FDA took away Gavreto’s approval for MTC even though the NCCN still recommends it for metastatic MTC! And the stoppage by the manufacturer was not due to safety concerns. When we inquired about financial assistance through the manufacturer, we were told that it is only available for the patient’s co-pay after insurance pays what they will, but there is no assistance when the insurance companies deny the medication! When we inquired how much Gavreto would be on a cash-pay basis, we were told it would be about $1,000 PER DAY!!!! FOR ONE PILL at the dose required!!!! It’s about twice the cost of Retivmo, but clearly his cancer cells are accommodating to Retivmo. His doctor wanted to switch him to Gavreto as his cancer cells would have no resistance to Gavreto. And to make matters worse, there is no “right-to-try” as it’s not considered an experimental drug as the FDA continued to approve Gavreto for other types of thyroid cancer.

Our hope is we can raise enough money to at least get him started on one month of Gavreto while we collectively fight Aetna to approve this treatment or alternatively find financial assistance through various other possible channels. We pray that once on Gavreto, it can get Evan back into years of remission. However, the treatment, like Retivmo, is lifelong or until it stops working, so the projected costs are off the charts.

We meet again with his oncologist on 10/29/25 to discuss all options. In the interim, he’ll stay on the max dose of Retivmo.

Evan, though fatigued, is otherwise feeling well. He works very hard at two jobs; about 60 to 70 hours per week to keep up with his medical and other expenses as best as he can. It’s no wonder he’s fatigued!

If you can donate any amount towards our goal of approximately one month of Gavreto’s cost ($30,000/month), we, the extended Shuler Family, and especially Evan, would be so very grateful. We are collectively so very, very grateful to all of you who have supported Evan in so many ways in the past since his fight began!

In the meantime, I am busy researching, writing letters, and making calls as an advocate for Evan and I hope, any other patient with metastatic MTC who is experiencing the same difficulties in getting insurance approval for the very limited treatment options that are available to them. Because of the rarity of MTC, there is very little research and dollars allocated to finding treatments for effective and long-lasting results for MTC. There are NO CHEMO options for these patients.

If you are unable to donate dollars, please just consider praying for financial assistance for Evan and for his attaining another remission. God bless you all and thank you!