Photo used with permission. Photography by Greg Goodman @ Adventures of a Good Man
The pastor’s wife of our church back in LA told me once, “Make your plans in pencil, and then give God the eraser.” Well God, here you go:
In a little less than two weeks, Kevin will check into the hospital at Emory University (Clifton Road Campus). He will begin a treatment called Interleukin-2 (IL-2). The treatment protocol will be one week inpatient, then two weeks off for recovery, then another week in, then another two weeks off. After that, he will be halfway through and they will conduct scans to see if the cancer is responding to treatment (i.e. shrinkage of tumors) If the cancer has not responded, he will stop treatment and we will move on to other treatment options (of which there are several). If the cancer has responded to the treatment, he will go in for two more rounds of one week on, two weeks off. The total treatment time, should he make it through the whole thing, will be about three months. We will start on Monday, July 9.
IL-2, much like interferon, occurs naturally in the body. With this treatment, he will be injected with doses much higher than the body could make on its own. The IL-2 does not directly attack cancer cells. It stimulates the immune system, which targets and kills the cancer cells. This is an FDA approved immunotherapy treatment for advanced melanoma. And it sucks.
IL-2 will make Kevin very very sick, which is part of the reason this treatment will be inpatient. He will be given a dose of the drug every 8 hours, starting at 11PM Monday night, and at every dose, the decision will be made to continue or not based on his body’s tolerance. Similar to the interferon, common side effects include chills, fever, fatigue, sleep disturbance, nausea/vomiting, diarrhea, dry/sore mouth, possible decreased liver or kidney function, and a change in blood counts. And oh yeah, it could affect his heart. If he were to start having erythmia or something, they would move him to ICU, get him stabilized, then bring him back and hook him back up to the IL-2!
IL-2 is one of the oldest treatments out there, and it is one of the least successful. It was FDA approved in 1998, and for 13 years, there was nothing else. Just 10-15% of patients respond to treatment (i.e. some decrease in the cancer). And in only 5% of patients is there what is called a “total response”.
Today there are several other treatment options, including ippilimumab, which is also a form of immunotherapy. There are also several extremely new treatments that are called targeted gene therapy, as well as a few chemotherapy drugs that have shown some efficacy in melanoma. Ippilimumab appears to show a 20% response rate, and some of the target gene therapies show extremely high response rates, 80-90%. These treatments all have less horrible side effects than the IL-2 and are less invasive in a patient’s life (i.e. no three month leave of absence for treatment).
So, why would we choose the treatment with the worst likely side effects, the most grueling treatment regimen, and the least percentage of response rate? Because we have decided to run straight into the fire. You see, IL-2, while it has the least chance of “success”, it is the only treatment that can offer us data for 20+ year survival rates. IF Kevin happens to be one of the lucky 5% for whom this treatment gives a total response, we could still have the chance to grow old together. Basically, if it works, it could be a home run.
That’s not to say that none of the other treatments offer similar hope. But drugs like ippilimumab, while they have shown higher response rates, have simply not been around long enough to have any data for long term survival. Basically, the people for whom ippi has worked must live for another 20 years or so before that drug can give us those promises. That may still happen, and if IL-2 doesn’t work for Kevin, ippi is still an option for us, and there is most certainly the possibility that we join the ranks of the survivors who are blazing that trail.
The two other classes of drugs that fall into this category of systemic therapy (total body treatment) are chemotherapy and targeted gene therapy. Chemo pretty much sucks and is not very effective, so it is rarely suggested these days. The main chemo drug that has shown any effect at all on melanoma, dacarbazine, was FDA approved in 1975, has a 15.3% response rate, and NO significant improvement in overall survival. Targeted gene therapy seems to be where it’s at for the big advances in melanoma research, and there have been TONS of new developments in the past 18 months. But, while most of the treatments have amazingly high response rates, the results have not been long lasting. Most patients have seen their melanoma recur just 8-10 months after treatment. There is a race going on in that area of research and literally every month new advances are made. The treatments are generally not toxic to the body, have shown great results, and seem to suggest that if they could get the right combination, perhaps two different targeted gene therapies, or a combination of targeted gene therapy and immunotherapy, they might see significant improvements in overall survival. But they’re not there yet.
Which brings us back to why we decided to run straight into the fire. I’m not sure what I was thinking when I posted yesterday that we weren’t brave; we hadn’t run into the fire, the fire has sprung up around us and we just haven’t run away. yet. Maybe God wanted to teach me something, I don’t know. Or maybe it was all just a coincidence. But I don’t really think it is, considering I wrote those words just hours before we discussed these treatment options and the logic behind starting with the most difficult, least successful treatment. And I’m still not ready to say we’re brave. We are trying to be brave. We are scared out of our minds, and both of us are thinking that this is more than a little bit crazy.
Kevin will have to take a three month leave of absence (unpaid, since he only has long term disability insurance, not short term). I will most likely be staying with him in the hospital while he endures a hellish experience that neither of us can really wrap our minds around. And the logical, data driven part of me thinks that the treatment is unlikely to be successful. Before you tell me that I’m being negative, think about it. It’s true, by accurate statistical language, it IS unlikely to be successful. In fact, it’s at least 85% likely that it will NOT make any difference at all.
But this feels right to us. We see examples all the time in the Bible where things are backwards… the least shall be greatest, the first shall be last, etc. God plucks out the most unlikely people, the prostitutes (Mary Magdalene), the tax collectors (Zaccheus), the alcoholics (Noah), the “losers” to be his greatest leaders. God shows us time and time again that He turns things upside down and then we come out whole on the other end. In our heads, we think this probably won’t work. That’s the only rational thing to think, given the data. But thank God we don’t live our lives by reason and outward data alone. I know that we must believe somewhere in our hearts that God can make this work. Otherwise, we simply wouldn’t do it, plain and simple.
Kevin and I are not really risk takers. We like data. We like to consider the pros and cons. We do cost benefit analyses on just about everything. And doing this simply does not make sense. But this is his life we are talking about. And if we believe there is a chance, no matter how tiny, that he could have lasting results, then we are jumping in with both feet.
I know that is is always me writing these blog posts, and so you all might not feel like you get much of a picture of how Kevin is doing with all this. Well, let me share with you a story of what happened at lunch yesterday. Keep in mind, those of you who know Kevin, that he is probably the most data driven, conscientious person you have ever met. I sat across the table from him, and both of us were abuzz with the plans we needed to make before treatment would begin on the 9th. But I stopped and said, “Wait, we need to back up and make sure we are both really on the same page here. I want you to try this treatment. It’s crazy, it’s probably not going to work, and it’s going to be hell. I want you to give it a shot. But it’s your body, and I would completely understand if you didn’t want to. I don’t know if I could do it. If you don’t want to go through with this, I am 150% behind you in that choice, and we’ll try something else.” Without flinching or hesitating for a second, this man who NEVER answers me right away on ANYthing, said “We’re doing it. Yes, it’s seems like there’s no chance, but really it’s the best chance we’ve got.”
The best chance we’ve got. The choice that seems the most risky and the least likely to succeed is the best chance we’ve got.
If you cling to your life, you will lose it; but if you give up your life for me, you will find it. – Matthew 10:39 NLT
It’s backwards, you see. Backwards and upside down. Doing these things that make no sense. But the promises God has made to us if we can just let go and be backwards and upside down, just give up our lives for Him… those promises are the best chance we got.