Topic: Forum downtime

[Blacklord]

All,

Sometime mid next month I'll be moving from Sydney to Melbourne. For a few days the forums will be unavailable. I'll give you some dates when it gets closer.

Lance

[Andrew Wiskow]

Perfect timing!  I'll be away for the whole month of July. 

Good luck with the move, Lance.

-Andrew

[BigDumbDinosaur]

And I'll be laid up again.  My bleeding disorder that last January's surgery was supposed to fix has taken a left turn into the nearest ditch.   

[Hydrophilic]

Sorry to hear that BDD.  Hopefully they'll patch you up good this time.  Best wishes for a full recovery.

[RobertB]

Best wishes for a full recovery.

     Yes, I second that.

         Leaving Holland today,
         Robert Bernardo
         Fresno Commodore User Group
         CommVEx v4 website - http://www.portcommodore.com/commvex

[airship]

BDD, I know firsthand how frustrating it is to have a recurring condition keep you down time and time again. I hope they get you plugged up right good this time. Have faith, dude!

[BigDumbDinosaur]

Thanks for the encouragement.  I went through a bunch of tests this morning and it was discovered that my liver has started attacking platelets.  Obviously they can't remove my liver, and the drugs that used to work are ineffective since I no longer have a spleen.  For now I'm being treated with high doses of corticosteroids until the docs can figure out what's next.

There's a drug called AMG531 that may be my salvation.  It works by stimulating the body to produce more platelets than the liver can destroy.  That's the good news.  The bad news is it's still in clinical trials and at least a year away.  The trials do look encouraging, as they've seen a 70-75 percent success rate in refractory ITP patients like me.  The trick right now for the docs is to figure out how to keep me going until AMG531 becomes available.  So far, I've been unable to get in on the trials, so I'll just have to wait.

[airship]

Can you get it in Mexico? 

[BigDumbDinosaur]

Can you get it in Mexico? 

Sure, along with 1.00 a gallon gas.

With my luck they'd administer the drug with unsterilized needles and then bleeding out would be the least of my worries.   

[Blacklord]

Guys,

I'm expecting the server to be shut down sometime tomorrow, it may be 10 daysbefore we're up & running again at the new location.

Lance

[airship]

YES!!! C128A! is back!!!!! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you!

[gklinger]

YES!!! C128A! is back!!!!! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you!

Two posts? That's it? Geez. The forums have been up for hours so I fully expected to read through 20-30 posts from you.

I take it you won't be slumming it at Lemon anymore?

[Blacklord]

YES!!! C128A! is back!!!!! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you!

Sorry about that - had 'issues'

[gklinger]

Sorry about that - had 'issues'

All's well if you're well. Everyone can think think of the downtime as a summer vacation.

[Blacklord]

Sorry about that - had 'issues'

All's well if you're well. Everyone can think think of the downtime as a summer vacation.

Except it's Winter here

[gklinger]

I've said it before and I'll say it again: You Australians are an odd lot.

[Blacklord]

I've said it before and I'll say it again: You Australians are an odd lot.

What I wanna know is how you northerners cope with walking around upside down all the time ?

[Stephane Richard]

Great to see its' back, finally. ...

I missed just about everyone here.  cept for new members, which I don't know yet. lol  but on the next downtime I'll probably miss you guys too LOL.

[LuxOFlux]

I've said it before and I'll say it again: You Australians are an odd lot.

What I wanna know is how you northerners cope with walking around upside down all the time ?

Reading your forum is a problem too. Can you add some code to turn it upright?

[Blacklord]

I've said it before and I'll say it again: You Australians are an odd lot.

What I wanna know is how you northerners cope with walking around upside down all the time ?

Reading your forum is a problem too. Can you add some code to turn it upright?

Looks fine from this angle

[airship]

Two posts? That's it? Geez. The forums have been up for hours so I fully expected to read through 20-30 posts from you. Wink

Busy at work. Give me a little time. I'm waiting to get those AtariLab items.

[BigDumbDinosaur]

Glad to see the forum is back on-line.  I wish I had something to post but haven't been able to get much done in the way of programming as of late.

My situation is steadily deteriorating and I'm seeing a lot more frowning when I visit the hematology clinic.  I've undergone another round of chemotherapy in an effort to control the ITP.  The drug being used (vincristine) has some nasty side-effects (barfing being one of them, peripheral neuropathy being another), but so far has not achieved the desired result.  I've already had one high-speed ride to the ER this month due to spontaneous bleeding.  Another one might be the last.  <Sigh>

However, I'm still convinced that medical science will find a way to save my sorry ass and I'll try to get Clock-Calendar done, along with some other stuff I was starting on.  I will have to be in rigor before they can pry my cold, dead fingers from the keyboard.  <Grin>

[airship]

BDD! You're not dead yet! That's the way to cheat the ol' grim reaper.

Yeah, I'd be dead by now if they hadn't come up with some new ultra-powerful antibiotics in the past couple of years. Those medical research guys are good. Let's hope they come through for you, too.

BTW, peripheral neuropathy isn't the worst thing that can happen to you. Like everything else, it's surprising what you can get used to. I can touch type again even though I can't feel where the keys are, and my little fingers drag like limp sausages. You adapt. Hang in there.

[RobertB]

You adapt. Hang in there.

     Yes, hang in there.

            Sincerely,
            Robert Bernardo
            Fresno Commodore User Group
            http://videocam.net.au/fcug

[BigDumbDinosaur]

Got what might be some good news today.  I've been accepted into the clinical trials for a new drug that may be able to help me with my bleeding disorder.  This drug is actually in the third phase of the trials, which means the part where it's determined if the stuff will kill you has been taken care of.  <Grin>  So at least I won't have to worry about the cure being worse than the illness.

All of the treatments I've received to date work by suppressing immune system activity, thereby reducing the rate at which platelets are slaughtered.  The bad part of this is I can get sick very easily.  The common cold can become a major illness, and something like the flu can become life-threatening.  This situation has put both my wife and me on edge, since she works with small children, who are a veritable Petri dish of who-knows-what.

This new drug works by causing the body to amp up the production of platelets to a level that maintains a reasonable count, thus not requiring the suppression of my immune system.  With my immune system back to normal, I won't have to worry about some insignificant flu bug taking me out.  I'll, once again, be able to go to events that involve being around a lot of people, such as concerts.

This new drug can be administered at home with a standard hypodermic syringe, using a once per week dosage.  That is how it will be given to me in the trials, except I'll be at the hospital when it's done.  Everything else I have received up until now has had to be administered via IV under clinical settings, with emergency medical care immediately available in case of a potentially fatal infusion reaction.

The drug I'm currently being fed, vincristine, has significant side-effects, including gastrointestinal nastiness, fatigue, insomnia and, most annoying, peripheral neuropathy.  The latter has greatly diminished my ability to type, do electronic work and play the bass (I play bluegrass, blues and jazz).  It's no fun constantly having numb hands and feet.  This new drug has mild side-effects that are more than tolerable by comparison.  We'll see...but I am eager to get started!