Guinea Pig?
March 20, 2008, 7:59 pm
Filed under: daily | Tags: , ,

As I’ve said before, I have Von Willebrand’s Disease. A bleeding disorder. Blah blah.

The clinic in Pittsburgh is affiliated, somewhat, with UPMC, which owns all of Western PA. UPMC is affiliated with Pitt (GO PITT! BIG EAST CHAMPS! BEAT ORAL ROBERTS TODAY!…… What the hell kind of college is ORAL ROBERTS?), which is a major research university. So…. this clinic does research.

And they want me to participate in the research!

Now, because I am a biology major, I have a weakness for science. And research studies. And I know how difficult it is to find appropriate subjects. And how important it is. So I have a hard time saying no.

But this study is a drug study. They want to see if a drug, rhIL-11, also known as Neumega, can provide the same protection against bleeding episodes, specifically menorrhagia, that does not respond to DDAVP or other treatments, that it provides to chemotherapy patients. Basically, I am the perfect candidate. I have menorrhagia (look it up!) that does not respond to DDAVP. They have me on birth control, which cut my “episodes” from 12 days to 6 days. But I still have heavy “episodes” and they are still unpleasant and draining (haha!). Also, I’m specifically low in another protein besides the von willebrand’s factor, which makes me super good for the study.

However.

Did you click on that link? Did you? Because the drug they want to give me? It’s a chemotherapy drug. Granted, its used to try to alleviate the side-effects of the chemotherapy, specifically low blood cell count and bleeding problems. But still. Heavy duty stuff. More importantly, they want me to give myself injections every day for a week every month, for 6 months. And keep diaries of my “episodes”. Plus an initial week of receiving it every day in an IV at the hospital. Plus monthly blood draws.

PLUS! I’m not allowed to get pregnant during the study. Damn. Oh, just kidding.

They also want to pay me $300. I was kind of hoping for more, because thats a substantial time commitment. Oh, and I’m poor. However, if they were paying more, it would imply that there were greater dangers related to this drug. As of now, the only concern is related to heart disease (not only do I not have heart disease, but nobody in my family does. In fact, we’re more inclined to have low blood pressure than anything).

I’m going to read over this over the weekend, discuss it with the medical people in Bear’s family, and with my family. Then I will make my decision.

I’m a little hesitant, what with the having to give myself shots in the ass for 6 months. But, research is a cause near and dear to my heart. If giving myself shots in the ass for 6 months means we’ve found a new way to treat this irritating disease, I’m all for it. I mean, yea, menorrhagia is a pain in the butt. Plenty of people deal with it. Why would I deal with giving myself shots in order to deal with something so minor? Here’s why. The amount of blood I lose every month is pretty substantial. I already have clotting issues, so during that period of time and immediately after, I have even greater issues just due to the decreased amount of blood. During that time, when I misjudge my edges and run into stuff like coffee tables and doorways, I get pretty awful bruises. I also am exceptionally tired and lethargic and even paler than usual. It’s not really good. If I were to have a serious accident, it could be a serious problem. By finding a way of treating this issue, I could improve my blood factor levels and improve my symptoms of the disease. It would be safer for me.

Besides, if I decide not to do it because $300 isn’t as much as I’d like, it’s still $300 I won’t have. So. Hm.

Any opinions? Should I participate?

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2 Comments so far
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Wow, I think that’s too big of a decision for me to even have an opinion.

Best wishes with whatever you choose to do, although I’m sure both choices would turn out fine.

Comment by Rachel

[…] 23, 2008 by potpie I had my screening appointment for the drug trial that I will be participating in […]

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