Renal Cell Live!

Saturday, March 28, 2009

Starting the Next Phase

I'm still not certain what I can and can't say here about the upcoming clinical trial, but I'd guess it's okay to say that we have a start date if all works out. I'll go in for screening on April 13, and if I pass the screening I'll start the trial on April 27.

I don't think I realized just how hard this had hit me, until we finally got the dates outlined. Such a relief! I'd been coasting along for over 3 years with only minor upheavals on Nexavar, knowing with some degree of certainty what each day would bring and what would factor into how I felt overall.

Imagine feeling terrible all the time without knowing why; that was the norm for me from 1998-2000. Being diagnosed with RCC was terrifying but it was also a relief - at least I knew what was wrong with me. Each step since then has had its own challenges. The biggest shock was the liver metastasis in 2003; and that probably comes closest to what I felt when Nexavar finally failed.

Yes, we all tell ourselves that we're being pragmatic and facing up to the fact that metastasis can and probably will happen, or that this or that drug can and probably will cease to be effective over time. Yes, we try to share information with other RCC patients and keep up our knowledge base. Yes, we do what we can to prepare ourselves for change and the next step. It's still not comfortable when the time comes.

I've been awfully depressed about having to face these changes. Maybe it's the equivalent of losing a job and being in limbo until finding another one. All that I know is that I'm glad to have something more definite in front of me now.

Tree swallows have returned as of last Sunday. Spring is offically back!

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Monday, March 02, 2009

Waiting Game

I've been off Nexavar for nearly 2 weeks now and am waiting for things to settle down; I've been nauseous and achy. Is this an effect of going off the drug, or is this weather and exposure to the usual pile of nasty end-of-winter colds and flu?

I've been assured that a spot is being held for me on the clinical trial, but we don't know the schedule yet. The earliest I could start is middle of this month, but will more likely be early April to fall into line with the clinical trial six-week cycle. I'll first have to pass their screening tests which, at this point, we all believe I can do.

I've been huddled up inside today, nauseous and achy as mentioned above, watching the wind whip traces of snow around the house. Winter is holding on grimly here and March has been uniformly nasty and cold so far.

All in all I feel like I'm sitting around twiddling my thumbs, waiting for things to happen. While I wait I'm letting things grind around in my head - not exactly worrying, I guess, but making myself a little anxious about what's to come. Once upon a time I was pretty good at keeping myself all positive, all the time, while waiting for something to happen. It's been a long time since I've had to think beyond the next set of scans, so I hope I can get back into that mindframe quickly this time.

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