This ordeal has more plot twists than an Agatha Christie mystery. We have been mentally prepping for an in-hospital treatment of Interleukin-2 at the start of next month, under the supposition that the next scans (scheduled for the 29th of this month) will show small (hopefully) disease progression. We'd like to believe the anti-hormone treatment she's been on would have some chance of success, but we know it's small, so we are being somewhat realistic about what comes next. We suspected Kaplan would recommend the Interleukin 2 treatment as it is the last FDA approved treatment available, before pursuing clinical trials.
In the interim, we had also thought we'd be going to the National Cancer Institute this month to have them check Meagan out and see if any of their clinical trials would be applicable. We sorta got shut down/put off because she is already undergoing treatment, and we THOUGHT she had to wait another 30 days after current treatment completion to even re-contact them.
A call to our research oncology nurse today clarified quite a few things, and may have opened up some other options near-term, as well as affirmed our faith they are looking out for our best interest and that it is really important that you be your own advocate. Meagan called to confirm the next times and days for the scans and follow-up with Kaplan. Then she discussed more with him about the perceived delay with the Cancer Institute and the desire the get a second opinion before starting the Interleukin2 treatment (particularly because we know some of the clinical trials there involve Interleukin 2, after they have done something called Adoptive Cell Therapy (taken your killer T-cells out of your body, multiplied them by the billions, make sure they can target the cancer, and then re-inject them into you after a chemo treatment).
Our clinical research nurse clarified the situation. After our meeting with Kaplan and review of the scan results - if there is growth - we can in fact go back to the Cancer Institute right away to get their assessment and clinical trial options. Meagan will have completed the anti-hormone treatment, we will have had a recent scan, so they can see us and assess, as long as treatment starts 30 days after the last treatment. Confusing huh? But better - our nurse will call to make the appointments and make sure the latest scan data is there, plus give us a package to take with. They will also set up an appointment with the Cancer Care Alliance doc in Seattle who is running a different melanoma clinical trial that we know she qualifies for. So hopefully after those visits and discussions with 2 other docs (melanoma specialists and their teams) and re-convening with Kaplan by mid-April, we will have some choices and at least the comfort of mind that we are looking at all the viable options. Because one of the viable options is to skip the standard Interleukin 2 treatment and go for the clinical trial that still uses Interleukin 2. It takes a while to grow the cells though, so one of the things we have to make sure of is that we have the time to make that option work (in other words the cancer isn't growing fast). We will pre-clear some things with Kaplan in advance - like if he'd support the Cancer Institute approach first over conventional (we have hints he thinks it is a good option), and that if she qualifies and they want to take out some tumors while there, we'd go ahead, knowing we have right to caucus with Kaplan before final decision.
So lessons learned. Make sure you understand your options. Don't hesitate to talk to your doc or research nurse about questions and issues. Don't hesitate to ask for second opinions. Clarify the process involved in clinical trials and when you are eligible to talk to them versus eligible to get treatment. If you aren't clear after the first discussion, call them again and go over it again.
It does put you on a spin cycle of emotion. In some ways you just want to know what the damn treatment is and go for it. Throwing more options in the ring causes me stress based on uncertainty and not knowing how to plan (logistics, etc.). It's just emotional too, because a life is on the line. But the benefit of course is maybe more efficacious treatment, and maybe fewer rugged treatments she would have to endure (because if she failed on the standard IL-2 she'd definitely do the clinical trial).
So a trip to Bethesda may be in the works after all.
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