Only Bad Options

Trying to decide on a relapse treatment plan was much more difficult than I had anticipated. When I read the MRI results back in May, I was devastated, but determined to push through whatever miserable chemo combo was on the menu for relapse. Instead, we were told there wasn’t a plan because nothing would cure the cancer at this point. We were, instead, given categories of options, which I may have written about: Option 1: no treatment, option 2: medium intensity chemo, 3: clinical trial.

What do you do when there are no good options? You do this:

I chose option 4. I asked for one of the clinical trial drugs off trial. The doctor said no. So, with a great deal of help from my sister in law, I began researching clinical trials. Meanwhile, the oncology team sent samples to various places for testing to see if his tumor had the characteristics needed to qualify Eli for various trials. The preferred option was for them to find a match with the MATCH trials. Lots of waiting, but there was no match. They also tested for a target for CAR T cell therapy, but that came back negative. The list if trials was further whittled down by Eli’s preference for travel near a beach and oral drugs (pill, not liquid).

Then, after weeks of waiting and many discussions, the doctor said they would prescribe Regorafenib (aka. Stivarga) off trial. Option 4 was on! We knew it would likely be denied by our insurance, but thought maybe we could somehow get them to agree to it through the process. After it was denied, and the doctors tried to get a similar medication approved, which was also denied, I checked out the manufacturer’s website. I found information about copay assistance and other programs, so I got the doctors to see what we could do with that, maybe the manufacturer would know how to get it approved.

We filled out paperwork to apply for their programs and sent it in. Then, last week, we were told that the program wouldn’t accept Eli’s application unless they received the insurance denial from our insurance. Our insurance uses a third party administrator to administer our pharmaceutical benefits, so the denial came from the administrator rather than our insurance provider. This was not good enough for the application.

Would our insurance provide a denial directly from them? Of course not. We could only get that denial directly from them if we appealed the denial, which could take another 15-30 days. By the time we got to that point, it had been almost 3 weeks since we’d first decided to go that route. In the meantime, I continued to seek further information about the clinical trials so we could have a backup plan in place. It was disheartening, to say the least.

Eli’s tumors were not taking a break, either. The remaining tumor in his foot continues to grow and is causing more and more pain while walking. The thigh tumor must have been missed by the surgeon, which was a possibility, and is easily felt now as the mass has grown a great deal. There is also a new growth in Eli’s arm, near the healing scar from his tumor removal almost two months ago.

It was the day before a state holiday weekend and I needed that denial yesterday, so to speak, so I spent the morning gathering documents and writing up my appeal. I included a brief, but heartfelt plea to deny the appeal, or approve the drug, by the end of the day. A few hours later, the insurance representative called and told me a decision had been made and the document I needed was available through the website. Miracle! If you’ve ever dealt with insurance, they just aren’t that fast. We had our denial, which I forwarded to the clinic, who forwarded to the program people.

Monday came along and I received a call from the manufacturer’s program telling me that they had our application and we would get a response within 24-48 hours. It turned out the response was a request for more information. So, I spent my early morning today working on more paperwork and faxing it in. Then a phone call came verifying the information I’d sent. Melanie, the wonderful person at Bayer who called to verify the info, was so kind and tolerated my tears, since I just couldn’t help it at that point. She assured me that she would call back to let me know whether Eli had been approved, but that it was looking good on her end.

As I got off the phone with Melanie, Tabitha screamed and cried in the yard below where I was sitting on our back deck. She had stepped on a bee and been stung. After scraping the stinger out of her foot, which was harder than it should have been, I carried her up to the deck and went to get the stinger off my thumb nail. As I finished that, the phone rang and it was Melanie from Bayer with news of the program. Eli’s application was approved and the medication would be overnighted so he could finally, two and a half months after relapse, begin treatment. Tabitha’s foot is fine, too.

It also happened to be a scan day today. I’m still waiting for the PET/CT report, but the sneak peak I finagled  showed only one more mass than the ones we knew about. There appears to now be a mass near his clavicle (collar bone). So, based on limited view of PET/CT today, Eli has masses in his right arm, right clavicle, left thigh, and left foot. I will post an update when I see the actual report, but this is good news. It hasn’t spread much in the last couple months, so I am glad, since I feared it would be worse. The other good outcome of Eli starting treatment off trial is that we can radiate most of the tumors. We’ll choose one to monitor for response to the medication, but radiate the others. At least, that’s what Eli and I decided, but we think the doctors will agree.


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