And the doctor says...

[sraun]

"Large granular lymphocyte leukemia"

He gave me a 24 page print-out. 10 pages of nice, dense, medicalese; 6 pages of references, and 9 pages of tables & pictures.

He summarized it as 'chronic, low-level, monitor and treat as needed, with a very high survivability rating'. If treatment is necessary, it will probably be something like one or two pills once or twice a day for three to six months.

Next question - is this a primary disease (which he strongly suspects), or a secondary? Apparently it can be triggered by a number of other diseases, including (but not limited to!) rheumatoid arthritis, viral infections (Epstein-Barr Virus, HBV, HCV, HIV, CMV - anyone recognize the non-HIV ones?), and a variety of other immune related disorders.

More blood was drawn, I have a chest & abdomen CT Scan scheduled for 20 April, and the next follow-up with the doctor is 4 May.

Comments

[brithistorian.livejournal.com]

Considering how it could have worked out, I think this was a pretty good outcome. (Obviously it could have been better, but it could have been much worse.)

The viruses are:
HBC - hepatitis B virus
HCV - hepatitis C virus
CMV - cytomegalovirus

CMV and Epstein-Barr are both relatives of the herpes virus. They're both very common (95% of adults in America have Epstein-Barr) but typically only cause problems in infants and people with compromised immune systems. (Epstein-Barr is also responsible for one form of mononucleosis.)

All in all, it sounds like pretty positive findings, especially if your doctor thinks this is the primary. Good luck with your followup.

[kalmn.livejournal.com]

oh, hell.

well, i am pleased to hear about the survivability rating.

cmv is cytomegalovirus. do i get a prize?

[sraun]

Oh, and there's a pathologist at the University of Minnesota School of Medicine who has a special interest in this - he'll be getting copies of my results and the occasional blood sample of his own to play with.

Which is just fine with me! Remember, we found this because I was trying to get involved in a high blood pressure drug study!

[mycrazyhair.livejournal.com]

Oh, hell, Scott. That sucks.

I'm thinking good thoughts for you.

[gramina.livejournal.com]

I've had cytomegalovirus as an adult -- it's one where if you get it as a kid you've got a sore throat for a day and then you're fine, but getting it as an adult meant about six months of constant exhaustion and fear of chronic fatigue syndrome. I could sleep ten hours or more and still need an alarm clock (or two) to wake up. I was put on medical leave and I'd wake up, drowse, get up and go to the kitchen and get out a pan and a can of soup, take a little nap on the couch, open the can and heat the soup, eat, take another nap... it was pretty bad for a couple of months. But not nearly as bad as the half-a-dozen other things it could have been!

I think you would have noticed if you'd had CMV as an adult.

[michaellee.livejournal.com]

Good luck.

[norabombay.livejournal.com]

Well, that sucks. Although compared to what it could be, it's not that bad. But still. my sympathies.

[dd-b.livejournal.com]

Well, that's something near a first -- relatively good news containing the word "leukemia", I mean. (Discounting the trivial versions which pair it with a negation.)

Still sucks, I imagine, in a general sort of way.

[nara-cat.livejournal.com]

For bad news, it could be worse, and the treatment (assuming that you'll ever need it, which hopefully you won't) really isn't bad at all. Still, my thoughts are with you.

[17catherines.livejournal.com]

Hi Scott,

Glad you at least (at last!) have a diagnosis, and that it is apparently fairly benign. Although leukemia is always a scary word...

Hope it works out well for you.

love

Catherine (who never knows what to write with these sorts of things, but hopes that the general emotions of concern and well-wishing are being communicated...)

[ex-erikvolso370.livejournal.com]

At least you know, and if you have to get dealt this card, the one labled "chronic, low-level, monitor and treat as needed" is the one to get.

Pulling for you.

[daedala.livejournal.com]

Eek. Hope it goes well.

[technomom]

*hugs* I'm glad about the survivability rating. If you have to have leukemia, at least there's that!

[gomeza.livejournal.com]

Well, unholy crap. Here's hoping that A) it's primary or at least not indicative of another, more serious, disorder, and B) that it responds well to treatment.

[minnehaha.livejournal.com]

I'm glad we can say, "Could be worse!"

But if you need something, please say so.

K. & B

[kk1raven.livejournal.com]

I'm glad to hear it isn't something worse. Good luck with keeping it under control.

[serendipoz.livejournal.com]

Many wishes that your health will stay good - and improve.

Epstein-Barr Virus is that which has been called chronic fatique syndrom.