Renal Cell Live!

Tuesday, April 14, 2009

No Names, No Claims

We spent a riotous (ha) day in Cleveland yesterday. It started off with a bang - whoever set up my appointments didn't include labwork, which always has to go first in our quest. So we ended up being about an hour behind all day, playing catchup with the schedule. Fortunately, everyone there is flexible and everyone makes things work as best they can under trying circumstances.

After labwork, an EKG, a bone scan, and C/T scan, I have been deemed healthy enough to begin the clinical trial on the 27th. Vicki passed along the further, good news, that the drug company's legal department had reviewed my request to include information on the clinical trial here. Their judgement: "No names, no claims" but postings are allowed. That is, I can't mention the drug company name or the trial drug's designation, and I can't make any claims about the drug's efficacy, but I can post generally about clinical trials, how the drug affects me, and how I feel, just as I always have. Vicki will be monitoring my efforts, and I don't have a problem with that. I'd hate to see the trial invalidated, or me getting kicked out, because I don't play by the rules.

I once strayed into the corporate world for a little over 5 years. It wasn't a good fit for me, but I certainly got an education on watching one's words. I was generally pretty cautious about what I said and how I said it, probably because I was in user services and had to produce results directly working with customers. Sometimes the folks in Marketing weren't so cautious and I spent a lot of time cleaning up after them. So I understand the concern; I'll do my best to be informative within the guidelines, as I feel that's why I'm here.

We enjoyed confirming a new favorite restaurant in the Cleveland area: Cafe Tandoor. We've hit the Westlake location 3 times and it is consistently wonderful. I foresee numerous stops there over the life of the clinical trial, and beyond.

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Saturday, April 11, 2009

Just the Fax, Ma'am

(With apologies to Sgt. Joe Friday of Dragnet fame ...) No joke - April Fool's Day, I got a voicemail from Vicki the clinical trial nurse. Her voice carried a note of controlled panic - could I please call her as soon as possible; there was nothing wrong, but there was an administrative problem that we needed to take care of as quickly as possible. So I settled in for some phone tag, feeling a mite less than reassured.

When we connected in late afternoon, she explained: she'd heard from the company sponsoring the trial. Tuesday, April 7 would be the first day for enrollment of new patients. As we would be in competition with several other institutions for the remaining spots in the trial, could I please, please fax the signed consent form to her no later than 9:00 a.m. on that date? I assured her that we'd figure something out, and set about lining up a fax machine for the proper date.

I mentioned this at the renal cell group meeting that evening. One of the caregivers responded, "FedEx Kinko's is open 24 hours a day." Well, geez, I'm not quite that clueless! It avails me nothing: there's no FedEx Kinko's facility in Marion, Ohio, and I'd have to drive 50 miles to get to one. We have an Office Depot, but it doesn't open until 9:00 a.m.

Fortunately for me, my credit union opens at 7:30 a.m.; when I put the question to them, they were more than happy to oblige me. I've been a member there for nearly 20 years and know everyone in the office pretty well. I sent my fax, and Vicki called to tell me that she'd received it and to thank me for complying with her request. Good heavens, I thought, I should be thanking her for making sure the way forward was as smooth as possible!

We do tend to take things for granted, don't we: "Doesn't everyone have ..." Starbucks? A multiplex theatre? Whole Foods and Trader Joe's? Or medical insurance? Good doctors? Prescription coverage? Adequate care facilities?

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Sunday, April 05, 2009

Long-Term Effects?

I had an appointment with Dr SC at OSU on March 31. His nurse K (sweet, blonde, tiny mother of twins) and I were going over the routine questions - how did I feel, what level of fatigue, what meds taken and when - when she mentioned, "I don't know but that you may be one of the longest-term patients ever on Nexavar. Certainly you're our longest-term patient; all our other folks have been off the drug within a year of starting it."

I started thinking then about the side effects that I've gone through, and how I feel now. What's due to Nexavar? What's due to RCC? What's due to advancing years and admittedly lethargic habits?

Unfortunately we think that the joint pain is probably permanent. It's eased somewhat since I went off Nexavar in February, but hands, hips, knees and lower back are still troubling me.

Fatigue is probably permanent too. This past week I started some classes in an adult education program; even cutting back on the number of classes I'd like to take and keeping it to two days a week only, I still found myself longing for the end of the week so I could return to my usual routine for a few days.

I want to review my current medications with Dr. G - is my high blood pressure permanent too? That came with Sutent and Nexavar, and it would be great if I could forego the 3 medications I take for that. Likewise, my hypothyroidism. Could I possibly return, even temporarily, to a state of taking nothing except pain relievers? I suspect that's a dream that won't come true, but it's entertaining to think about it.

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