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Why, What, How?

July 31, 2012

Yesterday was another milestone in cancer treatment: the official enrolment in the ipilimumab as standard of care trial. I am answering these three questions pretty frequently so I thought I would share them here: Why, What, How? Why are you having infusion therapy? What does that entail? How are you feeling?

With the assumption that because, not sure, and okay are not sufficient answers, I will elaborate.

Why are we choosing infusion therapy? First of all, you need to understand a little bit more about melanoma than you might already. It truly is the gift that keeps on giving. It has anywhere from a 30-80% rate of recurrence. The incidence of recurrence is greater depending on ulceration, regional lymph node involvement, and mitotic growth. I have all three. The only thing, and it is a big thing, that I don’t have is distant metastasis. All of the things, except three lymph nodes, that have been removed were free of cancer. But those three little lymph nodes may or may not have had time to plant the cancer somewhere else in my body. We don’t know. We will repeat the PET scan and the MRI of my head to ensure that I have “no evidence of disease” but that will only show us disease of a certain size and has no guarantee against microscopic disease. As I told the surgeon, my mother had a clean PET scan and was dead 18 months later. Then I started to cry. Then the med student started to cry. There are a whole lot of unknowns that we have to deal with and I hear the voice of Effie Trinket resounding in my head, “May the awds be evah in yoahh favaaah” They are not. Thus, we do everything we can to shift the balance. Second, we are trying to be the most diligent we can with the knowledge that we have right now. That means that we do everything in our power to limit any recurrence. We take the drugs. We just do. Chris and I both have too much experience with medicine, especially the life and death kind, to know that there are things worse than death. We minimize that risk wherever possible. If we did nothing and went the route of “monitor it” and it recurred in a place that they couldn’t operate or it wasn’t detected in time to isolate, I would never forgive myself, not to mention the hell that I would put my family through. It is not about believing that I am healed, it is not about limiting the power of God, it is every bit about making the best decision for us and being the best stewards of the knowledge and choices we have been given. I repeat, we suck it up. We just get it done.

Second, what does that entail? The study I have entered is to test an already approved drug and its efficacy against recurrence. The drug I might be getting—Ipilimumab—has been approved for stage 4 and recurrent disease. If my lung had, indeed, been melanoma, this drug would be the first choice. If the melanoma comes back, it will be the first choice, after surgery, to kill off the cancer. The study is trying to define if it is better to use this drug immediately after diagnosis and try to prevent recurrence from the outset or wait until there is a visible mass of cells and then attack. It would seem obvious, right? Not until it is proven. So here is how it will work: I will repeat the scans and do some lab work. If everything is still cancer free I will be randomized to a drug. I will either receive the current standard of care—Interferon alpha, or I will receive one of two doses of ipi, a low dose or a high dose. They don’t know which is most effective. There is Effie again, may the awds be evah in yoahh favaaah. Only this time, they are. I have a two thirds chance of getting the drug that every doctor thus far and everything I have read says is my best chance for preventing disease. I will begin infusions the following week. The courses of treatment are very different so there is no way to blind the study and I will know which path I am taking. I am not going to muddy the waters with the details beyond that save to say, Interferon is a consolation prize.

Finally, how am I feeling? Okay. I might go as far to say good. I am sleeping better, I am able to exercise again and it feels GOOD. My leg pain is mostly gone but still has a fair amount of dysesthesia. Chris taught me that word. It means “it doesn’t feel right but I can’t really think of a good way to describe what it actually feels like”. It tingles sometimes, it burns sometimes, sometimes it feels like the top half of my leg is asleep (imagine the top half of your leg feeling asleep and the bottom half feeling normal, it’s disconcerting). We are moving forward in the treatment plan and I feel like I am no longer in a free fall or even a holding pattern. The depression that has been hanging over me like a dense fog the last few weeks has lifted and I feel more myself than I have in months. All of those are good things. Some of those things are great. We are praying for the ipi and not the interferon, we are still anxious. Anytime I have a scan there is always the possibility that it will have a spot or blemish or something. That part always induces some level of anxiety.

We are doing okay. We are being diligent. We are keeping the faith.

How about you?

One Comment leave one →
  1. Melissa permalink
    August 3, 2012 1:29 am

    I will be praying for ipi. Hang in there girl, you have always been a fighter.

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