Saturday, March 19, 2011

The Tension Builds

It's at about this time  - ten days pre-scans - that the tension starts to build. Right now we are on an every other month PET/CT scan (insurance driven), which provides a bit more data than just a CT scan. The PET scan involves an infusion of radioactive sugar into your body and a device that measures the uptake of that radioactive sugar by cancer cells (cancer loves sugar). So you can really see where the cancer is, and unlike the CT scan which is just measuring tumor size, determine size and if a particular tumor is active or not.

Meagan has been on the latest treatment twenty days. So far no new tumors, a very good sign we hope as this would be the first time she has not found a new subcutaneous tumor each month. The subcutaneous tumors are not harmful in any way - they are a bother and evidence of the disease, but on their own they don't do anything to you. Obviously she can't determine if anything internally has grown or spread - that is the big concern and what the scans will tell us.

In some ways though, no new new skin level tumors creates optimism. Is it caused by the treatment kicking in? Is it caused by the new supplements she is taking? Or was the past monthly new skin tumor simply coincidence? One of the hardest things to do in evaluating side effects and evidence is separating causation from correlation. For example we have discovered there is no correlation between side effects and success with Ipilimumab (Yervoy). Her itching side effect was significant and prolonged, yet it did not work. Is this just a month that a skin tumor isn't going to pop up because the cancer is busy elsewhere, or is something working?

Optimism isn't a bad thing generally. But you don't want to create the illusion in your mind of false hope - hope which is dashed on the rocks of the PET scan. So overall we are trying to be optimistic - that something will eventually work. But each month, realism and cautious optimism are more in order - certainly for me. I've become like a Missourian, "show me" - in other words until I see the scans and data I am not going to let any particular month's outward activity drive me to a higher level of optimism. Been there, done that with Ipilimumab (Yervoy). So I am still focused on telling her we will prevail. But I am not being drawn into some enthusiasm around a change which may or may not be indicative. That can be a bit of a tension between us, so it's a fine line to walk (one among a number of others...).

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