Friday, May 1, 2009
I do use both Google Calendar and Yahoo Calendar reminder emails set to send out at 9am every day. I'm usually sitting at the computer so that works out well. But I had to make a plan to get up as soon as I see the email, take the pill, and then delete the email.
I seem to have a lot of short term memory issues and find that sometimes I get up, go to get the pill, realize my coffee needs warmed up so I can have something to swallow the pill with and I busy myself with refreshing my cup... only to find that I sit back down at the computer with a steaming cup of decaf and no pill.
I go back to checking email and see the pill reminder again. Then I sit there in a panic trying to rewind the DVR of my life to see if I took it or not, only to realize my life has no DVR or rewind button and what I see is that snow you get when you forget to pay the cable bill.
So, I now realize that the shots actually HAVE one up on the pill in the reminder category.
I never had to have a reminder email to do my shot. Not when I was on Copaxone, and not in the first part of this Phase III trial when I was *supposedly* injecting Avonex once a week but it turned out to be a healthy dose of IM water, no doubt. (I won't know until August, but I'm fairly certain I've been on fingolimod the whole time).
So, if I were sitting here wondering if I took my SHOT, I could just pat myself down until I found the sore, welted spot. The shot wins in the "I Know I Did It" department.
I think when I am done with the trial and go back to facing a choice in medications I'm pretty sure I'll opt for more email reminders or cellphone reminders or some other foolproof routine to use over the itchy, bruised, sore, welted shot reminder. True, it works well, but still.
Wednesday, April 29, 2009
Basel, April 29, 2009 - New Phase III results presented at the American Academy of Neurology (AAN) congress show that 80-83% of patients taking FTY720 (fingolimod)*, an investigational oral compound for relapsing-remitting multiple sclerosis, remained free of relapses during the one-year study compared to 69% of those on interferon beta-1a, an established standard of care (p<0.001).
These data reinforce previous results from the TRANSFORMS study announced in December 2008 showing that the relapse rate at one year was 52% lower in patients taking FTY720 0.5 mg than with interferon beta-1a, or Avonex®** (0.16 vs. 0.33 respectively). The relapse rate with FTY720 1.25 mg was 38% lower than with interferon beta-1a (0.20 vs. 0.33, both p<0.001).>
"TRANSFORMS is the first Phase III clinical trial to show that oral fingolimod may provide patients with an alternative choice to currently available medications for treating relapsing-remitting multiple sclerosis," said Jeffrey Cohen, MD, lead investigator of the TRANSFORMS study and staff physician at the Cleveland Clinic Mellen Center for Multiple Sclerosis Treatment and Research in Cleveland, Ohio, USA.
Also presented at AAN were longer-term results from an ongoing open-label Phase II extension study (n=155). This showed continued low relapse rates after four years of treatment with FTY720, with no significant change in the safety profile from three to four years.
In TRANSFORMS, FTY720 was generally well-tolerated with 87% of FTY720 patients completing the study on treatment. The most commonly reported adverse events, seen in more than 10% of patients in all three study arms, were headache, nasopharyngitis and fatigue. Adverse events seen in FTY720-treated patients in TRANSFORMS included transient reductions in heart rate at the start of treatment, small increases in blood pressure on average, elevations in liver enzymes (also seen with interferon beta-1a), and a small number of cases of macular edema. In terms of serious adverse events, infections, bradycardia and atrioventricular block, malignancies and dyspnea were reported in less than 2% of FTY720-treated patients. Following the preliminary release of data in December 2008, a patient who had discontinued FTY720 treatment in August 2008 died from aspiration pneumonia related to a progressive neurological condition in February 2009. The exact nature of the underlying diagnosis is unclear, but viral testing has proved negative, including testing for progressive multifocal leukoencephalopathy (PML). A role for FTY720 could neither be confirmed nor excluded. In general, the safety profile of the FTY720 0.5 mg dose appeared to be better than that of the 1.25 mg dose.
Read the rest, including disclaimers, etc. [click here].
Tuesday, April 28, 2009
Ted, our *mutual friend* had been murdered.
We had wondered why he hadn't been around in the past 6 months, but Ted's like that. He's an aging hippy that always has something going on, some new scheme to try and make money without actually working. Mostly it was selling collectible car parts on ebay and buying/selling property. He seemed to do well at both and spent his time however he saw fit.
To think he has been murdered and I'll never see his bearded grin show up at my sliding glass door again (which he knew ticked me off as I prefer to have visitors come to the front door and not scare the crap out of me), well it just leaves me really sad.
And thinking about how nothing we can do will stop the inevitible from becoming the Present. At some point, and the day will come, we will each face our mortality.
I can picture Ted standing here having this very conversation with me and giving me his philosophy on what comes after... I just can't believe he is gone.
Like dandelion seeds scattered by the wind, he is no more. And while we weren't the best of friends (and I often found myself ticked off at him for pushing my buttons which greatly amused him), I do miss him and now feel so vulnerable to the fragility of life itself.
And it was so pointless and preventable that it pisses me off that it happened at all.
He went to argue with someone he's had a long-standing feud with. I vaguely remember him recounting tales of why the two families (much like the famed Hatfields and McCoys) didn't get along.
But that was back in western NY state and altho he makes frequent trips between FL and NY to get car parts to sell on ebay, I thought the feud was all in the past.
Apparently it wasn't.
Ted went to the guy's house and fought with him in the driveway. When the guy ran into his house, Ted followed full of rage. The man ran to his bedroom and locked the door behind him. Ted, unarmed but angry, stood outside the door yelling at him to come out and banging on the door.
The man in the bedroom had a shotgun.
One blast through the door and Ted, who only had words as a weapon, lay dying on the floor.
The man who shot him calmly called 911 after bystanders to the incident tried unsuccessfully to administer CPR, and reported that he needed the cops to come because he had just killed a man.
And with that, Ted's laughter, wise-ass comments, eagerness to lend you a hand, and gentle friendship was extinguished forever.
I just can't picture him as the "aggressor" in a confrontational situation, but everyone has lost their temper before. Now I wish I had paid more attention to the stories of why they had a beef to settle. Then maybe I could see why Ted had become so angry and chased the guy right into his home.
In NY state, you can shoot to kill if you are in fear for your life. The grand jury decided that is just what this guy did and that he had every right to. Never mind the long standing feud, or the fact that Ted was unarmed. He made a poor judgment call to visit this guy... and paid for it with his life. My guess is that no matter what the problem was, Ted wouldn't have thought it worth losing his life over. Nor taking one.
Can you picture a hippy all laid back and grinning with his long hair, beard, faded, ripped t-shirt, holey jeans and tennis shoes held together by duct tape doing such a thing? I can't.
Death is a slap in the face. Death is ugly. Death is unfair. And death keeps stealing my friends.
I feel like it's circling me.
The worst part about all of this??
The indignity that I can't find a single obituary or eulogy to Ted. The newspaper story just has him as the victim of an incident. It didn't even humanize him. It was all about the other guy.
Now that I've read that and seen the outcome of a story about a person I knew pretty well, it makes me wonder about our whole justice system. True, I wasn't there and Ted could have been menacing and maybe scared the other person bad enough to use deadly force...
Or maybe the guy set him up, running right to his gun and figuring he'd end it once and for all. A trap that he knew he'd get out of by playing the self defense card. Finally winning the feud once and for all.
But the fact that he's gone and life goes on and it seems just like he never existed... that creeps me out and pisses me off. Something ought to have changed because of his having been here, and there should be some kind of hole -- other than the one in my psyche -- that is left by his absence.
Not one line in the local paper.
Just a For Sale sign in front of his house.
So, that's why I'm writing this. Something needs to be out there somewhere to say goodbye to Ted.
We loved you (sorta, ya big lug) and will miss you.
We'll miss you showing up in God knows what kind of new clunker you got for a song so you can rev it up in the driveway and ask the old man what he thinks that noise might be.
I'll miss looking casually over to the back door and jumping out of my skin because you freaked me out by standing unannounced on my back patio.
I'll miss the way you kept trying to talk me into helping you with your real estate ventures, and trying to get me to make that website for your car parts.
I'll miss how you knew it all, or thought you did.
I'll miss how you told such wacked out stories that we never believed you once you had some Jack Daniels in you.
Guess maybe we should have paid more attention.
I'll remember your wave as you left on your trip to NY. "See ya!" you yelled.
In heaven, Ted.