Tuesday, March 1, 2011

It's a Long and Winding Road

that leads me to grey hair....

The twists and turns continue. Honestly it seems like just when you've mentally got yourself in order to handle the projected path, something comes and and bam! it all changes.

We are learning the difference between FDA approved treatments and clinical trials. In order to participate in a clinical trial, you typically have to have not had treatment for at least 30 days. In some cases you can't have had a certain treatment and in others you can only participate if you've had certain treatments. I get why this is so - they want to be able to measure the impact of their treatment on the patient and if they are already taking some drug, how will they know which worked?

The thing about approved treatments is a doctor can prescribe them freely. So it doesn't matter if you are under a different treatment regimen up until the minute they put you on the next thing.

The conundrum of course is that you have to be left untreated for a period of time if you want to participate in a clinical trial - which means the disease will progress for sure due to the forced time lag. So that pretty much sucks.

As good as the docs and research nurses are, they don't know it all, and what they think doesn't always turn out right. So they end up toying with your expectations. I think expectation management is pretty important, and right now we have a gap between what we thought would happen and what will likely happen.

Agility and nimbleness need to be the watchwords for a cabana boy.

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