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[personal profile] klwilliams
My husband pointed out that, in the European way, today's date is 4/8/16, or 2^2, 2^3, 2^4.

I don't have grand jury duty today, for the third week in a row. We were told that having even one day off would be a rare occurrence. I'll enjoy the extra sleep and the chance at getting my own work done. I've decided to try consulting for realz, and my pitch needs some work.

Today Mac followed me into the bathroom when I went in to take my shower, and perched on the top of the toilet tank. He was very polite and didn't know the Kleenex box or the empty toilet paper roll off. He stayed there while I took my shower, and paid careful attention afterwards as I took my morning medication and brushed my teeth, etc. When I was done he cheerfully led me through the door, but headed off towards his food bowl instead of the bedroom. Nice try, but I wasn't following.

I talked to my neurologist yesterday. He pointed out that I have the JC virus (named for the first fellow they found who had it). It's very common; seventy or so percent of people have it. What matters, though, is that the virus can cause a horrible, fatal, non-curable brain disease called PML, and the only thing that's keeping it at bay is my immune system. If my immune system is destroyed, like the chemotherapy treatment I want to have, my chances of getting PML (the horrible, fatal, non-curable brain disease) go up.

He's going to see if the Sheffield doctors have anything to say about this. We'll see.

Date: 2016-08-04 11:17 pm (UTC)
From: [identity profile] acanthusleaf.livejournal.com
Well, shit. Let's see what the dictors say.

Date: 2016-08-04 11:37 pm (UTC)
From: [identity profile] galeni.livejournal.com
Oh. Fingers crossed for you.

Date: 2016-08-05 10:05 am (UTC)
From: [identity profile] shewhomust.livejournal.com
I'm glad your showering is being properly supervised during these nerve-wracking deliberations.

Date: 2016-08-05 05:32 pm (UTC)
From: [identity profile] klwilliams.livejournal.com
Mac is concerned for my welfare. Because I'm the one who takes him outside. And lets him sleep on my desk.

Date: 2016-08-05 05:26 pm (UTC)
From: [identity profile] rachelmanija.livejournal.com
Oh, that sucks. Even if it's a low risk, what a thing to have to worry about.

Though... If 70% of people have it, then I'd inquire about whether it's tested for as a matter of course before you undergo a temporarily immune-system destroying treatment (or even immune-suppressing treatment? That's much more common) and if so, are people with it barred or advised not to get such treatments. If not, I wonder how common it is in general for people to get PML post-treatment. That is, it might be possible to find out how much of a risk that is in real life, given how common the virus is.

(I have no idea if I have it or not and never even heard of it before, so I'm guessing it's not that well-known.)

ETA: Ignore that. I just looked it up, and that's obviously been researched quite a lot since it looks like the way people mostly find out that they had it is that they got an immune-suppressing illness or took an immune-suppressing drug. In that case, you should at least be able to get a reasonable gauge on the risks, and the Sheffield doctors probably have guidelines for this issue. UGH. I hope the risk is tiny and it's not a bar.
Edited Date: 2016-08-05 05:31 pm (UTC)

Date: 2016-08-05 05:32 pm (UTC)
From: [identity profile] klwilliams.livejournal.com
PML is fairly well known in the MS world, especially after Tysabri came out and several people died from it. That's one reason I don't take Tysabri. The drug I do take, that I don't think suppresses the immune system at all (Tecfidera) also carries a PML/JC virus warning, because two people taking Tecfidera died of PML.

My neurologist is checking into the options. I suspect it's going to be one of those things like why you should wear a helmet when riding a motorcycle (besides not wanting a ticket). 99.99% of the time you won't fall off the bike and land on your head, but that 0.01% of the time? Yeah.

Date: 2016-08-05 05:39 pm (UTC)
From: [identity profile] rachelmanija.livejournal.com
I'm surprised I hadn't heard of the virus and disease before, since (I now see) it's also a complication of AIDS. Given that… HIV is fairly common, the virus is extremely common, there must be a lot of overlap, but comparatively few people get it. You're probably right about the odds but that's a hell of a thing to have hanging over your head.

Date: 2016-08-06 03:31 am (UTC)
From: [identity profile] thread-walker.livejournal.com
Wow. Fingers and toes crossed.

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