I'm on an email list for an MS group spearheaded by my neurologist at Shands Jacksonville, and today I got an email with a link to a local news story about the clinical trial.
It was interesting to see another patient who's going through the same thing as I am and even better to see that he's receiving great results.
Here's a link to the story. I tried to embed the video but I'm no geek and kept getting errors. At any rate, my neuro (who's also my hero) is the doc in the video.
Click here for the video and story.
Friday, December 28, 2007
Monday, December 24, 2007
Fingolimod Christmas
Twas the night before Christmas
and all through the place
not a muscle was twitching
not the ones on my face
The numbness was gone
From my old achy calves
And I didn't take any baclofen,
not even halves.
I in my jammies and my
boyfriend in tow
had just settled in to watch
our favorite show.
When what to my wondering ears
should I hear
But my neuro's voice chiming into
my brain loud and clear.
"No Copaxone, no Beta, no Avonex now,
No Rebif or Tysabri for you, holy cow!
You'll make it on FTY720, you'll see...
You're nigh seven months being relapse free.
As dry leaves before a wild hurricane fly,
My pills swirled up, up into the sky.
Only to rain down around me in piles
Guarding my body from MS all the while.
Okay, so I'm making that part up,
it's true,
But I just can't believe this stuff
won't be approved.
Without one small twitch
of a side affect showing
I share with you on Christmas Eve
My spirits a-glowing.
If an oral medicine helps
slow the MS beast,
Then upon Fingolimod soon
we'll all feast.
To the top of my soap box,
to the top of the wall,
Now stay right behind me
and cushion my fall.
As I come back down dizzy
and legs all tuckered out...
I yell "Merry Christmas!"
and go back inside to drink a cup of hot chocolate, ponder why I haven't gotten the packages wrapped and why I have sat here at the computer so long writing some stupid poem that doesn't even follow the original correctly and makes no sense...
And now you can wonder why you bothered to read this.
Merry Christmas!!
Monday, December 17, 2007
Passing the four month mark
Yesterday marked the fourth month since I spent the day getting Randomized in this clinical trial of Fingolimod. That's one third of the way to completion and I'm already feeling wistful about the possibility that perhaps it will not win FDA approval for some stupid, unthinkable reason.
In the past Copaxone was my pacifier. Knowing I was taking my shot and doing all I could to ward off the MS boogie man. But the boogie man figured out that he was impervious to my Copaxone sword and he raised his ugly head repeatedly. Then I had to spit out my Copaxone pacifier (figuratively speaking) and reach for the bigger gun with heretofore unknown powers: FTY720.
Since brandishing this new shiny weapon the MS boogie man seems to be left scratching his head and laying down for a nap with seemingly one eye open just in case I put the weapon down and he sees a angle of attack left open.
I want this drug to be the Cloak of Invisibility or Invincibility for me and all who shall one day come to take it. I know there are lots and lots of MSers out there who have endured this disease longer than my single digit battle (9 years) and have lived through times where the only answer to the question of "What can be done?" was "nothing." Those people have my undying admiration... to have made it thus far and lived to tell the tale is a feat that I cannot imagine.
It's strange when you have a chronic condition from which there is no respite. You can't help but wonder what is in your future. Even though I have no immediate outward signs of disability, I think about what might become of me quite often.
The other day, my kitten hurt her paw. She put it somewhere she shouldn't have and ended up in pain. I don't know quite what happened, but she spent half the day limping. Other than the limp, she was the exact same kitten she's always been.
That got me thinking... how fortunate animals and small children are. They don't have the capability of pondering their predicament. They don't spend their time dwelling on "will this get worse?", or "what will I do if it does?". No, they seem to adjust beautifully to their new reality and move on.
I want to be like that. I want to move ahead, never look back, and face whatever becomes of me with an attitude of "I can handle this!" It would be a true blessing if I could.
I hang onto the positive notion that these drugs in clinical trials are going to work miracles for us all.
Have a wonderful holiday season....
I'll see you next year.
In the past Copaxone was my pacifier. Knowing I was taking my shot and doing all I could to ward off the MS boogie man. But the boogie man figured out that he was impervious to my Copaxone sword and he raised his ugly head repeatedly. Then I had to spit out my Copaxone pacifier (figuratively speaking) and reach for the bigger gun with heretofore unknown powers: FTY720.
Since brandishing this new shiny weapon the MS boogie man seems to be left scratching his head and laying down for a nap with seemingly one eye open just in case I put the weapon down and he sees a angle of attack left open.
I want this drug to be the Cloak of Invisibility or Invincibility for me and all who shall one day come to take it. I know there are lots and lots of MSers out there who have endured this disease longer than my single digit battle (9 years) and have lived through times where the only answer to the question of "What can be done?" was "nothing." Those people have my undying admiration... to have made it thus far and lived to tell the tale is a feat that I cannot imagine.
It's strange when you have a chronic condition from which there is no respite. You can't help but wonder what is in your future. Even though I have no immediate outward signs of disability, I think about what might become of me quite often.
The other day, my kitten hurt her paw. She put it somewhere she shouldn't have and ended up in pain. I don't know quite what happened, but she spent half the day limping. Other than the limp, she was the exact same kitten she's always been.
That got me thinking... how fortunate animals and small children are. They don't have the capability of pondering their predicament. They don't spend their time dwelling on "will this get worse?", or "what will I do if it does?". No, they seem to adjust beautifully to their new reality and move on.
I want to be like that. I want to move ahead, never look back, and face whatever becomes of me with an attitude of "I can handle this!" It would be a true blessing if I could.
I hang onto the positive notion that these drugs in clinical trials are going to work miracles for us all.
Have a wonderful holiday season....
I'll see you next year.
Sunday, December 16, 2007
Friday, November 23, 2007
Thanksgiving wish
I know I'm a day late with a Thanksgiving message, but I was doing what I was supposed to yesterday -- enjoying family. I hope everyone had all they wanted to eat and that they were able to spend time with the ones who matter most in their lives. I did.
This year there are many things that I am thankful for. This clinical trial is very high on that list. I remember when I received my MS newsletter that had an article about the "upcoming trial" in their research section.
I read the article and it stated that FTY-720 would be pitted against a currently approved MS therapy. I was soooo hoping it was Copaxone that they were testing against. During that same month I got a flyer announcing that we would have a guest speaker at our support group meeting. The guest speaker would be none other than my brand new neurologist whom I had yet to meet.
I had lost my previous neurologist who had been with me since diagnosis after he had a stroke 2 years previously. When I learned that the man who would soon become my new doctor was going to be guest speaker, I felt I was destined to go. I took the newletter with the info about the clinical trial with me.
During his speech he got around to discussing his excitement over all the new drugs and treatments in the pipeline. He took the very same newsletter out of his briefcase and passed it around for all to see -- with the section about the FTY-720 trials highlighted. I raised my hand and asked what drug they were testing it against and the answer was the biggest letdown I had felt in a long time. "Avonex", he said.
I didn't ever want to take an interferon. I had heard horror stories about the side effects. Who wants to spend 3 days a week having horrible flu-like symptoms, not to mention the suicidal warnings about it? Speaking strictly from a position of one who has no experience with interferons and is terrified of any new drug, I thought "No thanks, I'll pass."
During that time I was walking with a cane and in the throws of an unrelenting relapse. I was miserable. I had to call the MS clinic and beg them to get me set up for a local IV infusion of high dose steroids to calm the flare because I just couldn't take the symptoms any longer and they didn't seem to be getting better.
A couple weeks later I saw the neurologist finally. He's a very busy man and seemed rushed. In his no-nonsense way, he noted that I was in the middle of a relapse and asked me how I thought the Copaxone was working for me. I had to admit that I guessed it wasn't. We discussed switching me to a different disease modifying drug. I burst into tears and said I didn't want to switch to one of the only alternatives which are all interferons. So, he suggested the trial. He said the beauty of it was that I had a 2/3 chance of getting the FTY-720 instead of the Avonex, but that either way I would be on SOME kind of drug that would surely work better than the Copaxone had been.
After hemming and hawing and meeting with the recruitment nurse, I finally signed on. That first day (Randomization Day) where I got the initial dose of the medicine was one of the scariest days of my life. I was so sure that, with my luck, I would get the Avonex and be miserable.
Now, 3 months into treatment and 6 months since the start of my last flare, I can honestly say that I thank my lucky stars that everything fell into place for me like this.
I'm not a church-going, bible-thumping kind of gal, but I do believe in God and that He listens. I look back on that time, floating in a sea of terror without a neurologist to throw me a life line, and I remember praying. I don't think the chain of events: getting the newsletter, having my new neuro speak at the MS meeting, or being invited to join in this study (for which my neuro happens to be lead investigator) was anything short of divine intervention.
I think He knew I couldn't take any more... and he threw me a life raft in the form of a little brown capsule called Fingolimod. Have I mentioned how thankful I am?
My Thanksgiving wish is that FTY-720 gets approved and all people with MS can have the choice that's been given to me....with the kind of results I have had.
Happy Thanksgiving to you.
This year there are many things that I am thankful for. This clinical trial is very high on that list. I remember when I received my MS newsletter that had an article about the "upcoming trial" in their research section.
I read the article and it stated that FTY-720 would be pitted against a currently approved MS therapy. I was soooo hoping it was Copaxone that they were testing against. During that same month I got a flyer announcing that we would have a guest speaker at our support group meeting. The guest speaker would be none other than my brand new neurologist whom I had yet to meet.
I had lost my previous neurologist who had been with me since diagnosis after he had a stroke 2 years previously. When I learned that the man who would soon become my new doctor was going to be guest speaker, I felt I was destined to go. I took the newletter with the info about the clinical trial with me.
During his speech he got around to discussing his excitement over all the new drugs and treatments in the pipeline. He took the very same newsletter out of his briefcase and passed it around for all to see -- with the section about the FTY-720 trials highlighted. I raised my hand and asked what drug they were testing it against and the answer was the biggest letdown I had felt in a long time. "Avonex", he said.
I didn't ever want to take an interferon. I had heard horror stories about the side effects. Who wants to spend 3 days a week having horrible flu-like symptoms, not to mention the suicidal warnings about it? Speaking strictly from a position of one who has no experience with interferons and is terrified of any new drug, I thought "No thanks, I'll pass."
During that time I was walking with a cane and in the throws of an unrelenting relapse. I was miserable. I had to call the MS clinic and beg them to get me set up for a local IV infusion of high dose steroids to calm the flare because I just couldn't take the symptoms any longer and they didn't seem to be getting better.
A couple weeks later I saw the neurologist finally. He's a very busy man and seemed rushed. In his no-nonsense way, he noted that I was in the middle of a relapse and asked me how I thought the Copaxone was working for me. I had to admit that I guessed it wasn't. We discussed switching me to a different disease modifying drug. I burst into tears and said I didn't want to switch to one of the only alternatives which are all interferons. So, he suggested the trial. He said the beauty of it was that I had a 2/3 chance of getting the FTY-720 instead of the Avonex, but that either way I would be on SOME kind of drug that would surely work better than the Copaxone had been.
After hemming and hawing and meeting with the recruitment nurse, I finally signed on. That first day (Randomization Day) where I got the initial dose of the medicine was one of the scariest days of my life. I was so sure that, with my luck, I would get the Avonex and be miserable.
Now, 3 months into treatment and 6 months since the start of my last flare, I can honestly say that I thank my lucky stars that everything fell into place for me like this.
I'm not a church-going, bible-thumping kind of gal, but I do believe in God and that He listens. I look back on that time, floating in a sea of terror without a neurologist to throw me a life line, and I remember praying. I don't think the chain of events: getting the newsletter, having my new neuro speak at the MS meeting, or being invited to join in this study (for which my neuro happens to be lead investigator) was anything short of divine intervention.
I think He knew I couldn't take any more... and he threw me a life raft in the form of a little brown capsule called Fingolimod. Have I mentioned how thankful I am?
My Thanksgiving wish is that FTY-720 gets approved and all people with MS can have the choice that's been given to me....with the kind of results I have had.
Happy Thanksgiving to you.
Wednesday, November 14, 2007
Tag, you're it!
I can't believe it's been very nearly (in six more days) three months since starting the clinical trial. Everything I was so worried about before I first started seems a fading dream now. I can barely remember what it was I was fretting over. Side effects, mainly, no doubt. I hate drugs and won't even take a Tylenol for a headache unless it gets incapacitating. Did I mention I'm a hypochondriac? It is especially pronounced when taking new meds...I read the insert and find that I am having every possible side effect known to man, and coming up with a few of my own.
I look back on where I was, in the middle of a flare-up, four months ago, and I see I have come a long way. I was having a terrible time physically. Using my cane to waddle about on tired, rubbery, numb legs. But I think the main debilitating symptom was my state of mind. It's like my brain short-circuited and I was in a constant state of panic. I ended up more than once (actually 3 times) at the ER having what I was sure was a heart attack in 2 cases and an adverse event to medication on the 3rd....only to find out I was hyperventilating and having a full blown panic attack.
The doctor wanted to start me on an antidepressant (the one that's got the commercial of the little blue bouncing cartoon pill) but I was too stressed out to take it. I kept my Xanax handy like a life ring on a sinking boat.
But then I started this trial and after the fear of the unknown was conquered, I have settled into a comfortable routine. I have regained my sanity (or what I know as sanity -- if anyone were to try my brain on for size they'd probably beg to differ about what sanity means). And something amazing started to happen. My body slowly started to cooperate.
I was reading a post on MSWorld.org (a fantastic group of MSers who have come together to share experiences, knowledge, and camaraderie) questioning why MSers can't hop. I read it and thought "what?! I can hop!" so I got out of my chair and tried it. To my amazement, my feet would not come off the floor no matter how much I tried to make my voice sound like Captain Kirk giving the order! "Jump!" I shouted. But my legs yelled back "I'm givin' 'er all I've got, Captain! She's not going to jump."
Well, that ticked me off to no end. I mean, I can understand the inability to be a cyclist or a marathon runner, but a little hop?? Come on! It's not that hard, even babies can do it. So that's when it began.
I forced myself to keep trying. At least once a day (always when nobody was around)I would stand up, bend at the knees, and will myself to spring high into the air. I never actually got my entire feet off the floor, just the heels would come up a little and want to catapult me forward. Having nothing better to strive for in my life at the time, I just kept at it. This went on for a week or so and I finally got both feet to come off the ground. I was giddy with excitement and wanted to show someone. I took my 9-year-old outside and said "Stand back and watch this!" When he saw me hopping he screeched and squealed and got all giddy with me. He said "Mom!! You can hop!!" and that was the best feeling in the world.
I didn't stop there, tho. I figured if I could force myself to hop even tho I had apparently forgotten how temporarily, then maybe it would work with running.
I have tried over the past several years, to run. It's hard to explain what it feels like to have forgotten how. I didn't think it was really that I physically could NOT run, but when I tried there was this hesitancy. I'd lift one leg and try to push off with the one in back like I remembered doing all those times as a kid, but...nothing. Three gigantic Frankenstein-like clumsy steps was all I could manage.
One month later, after trying day in and day out, I again summons my son to the back yard. I felt almost like I was his age again judging by how excited I was over something so silly....
I said "Come over to this tree and stand right here." I drew a line in the sand with my toe. "Don't cross that line, okay?" He just nodded and looked confused.
"I'm going to stand behind that line with you and when I say 'GO!' we're going to race to the fence over there."
Now the fence is fifty feet away and my son said "oh, su-u-u-u-re, Mom" like he was placating a crazy person. But in another 3 seconds I had counted down and shouted "GO!" and I was leaving him in my dust.
He was dumbfounded for just long enough for me to get a head start. Then he sprang into motion and quickly caught up, jogging alongside easily as I huffed and puffed and forced my feet to plod along with all my might at what felt like it should surely be superhuman speed.
We raced again 2 more times, each time he beat me easily. Then it was time to go back in and rest. I felt like I had just done the MS150 or something. He wasn't even out of breath. He gave me a big hug and said "Mom!! You RAN! and I'm so proud of you!"
Next time we went outside he tapped me on the shoulder and took off running shouting "Tag! You're it!" I just bet he's wanted to do that with me his whole life. It made me smile and take off after him. I never did catch him, but maybe if I keep practicing while he's at school I can surprise him again.
I don't know what it is. Maybe it's the Fingolimod, maybe it's God cutting me some slack, maybe it's just the change in attitude. Whatever it is, I feel better every day.
I thought I would share that story because so much about this disease is depressing and leaves you forlorn. A story of accomplishment can be uplifting and the positive energy can be contagious. Try doing something you thought you no longer could. You might just surprise yourself.
I look back on where I was, in the middle of a flare-up, four months ago, and I see I have come a long way. I was having a terrible time physically. Using my cane to waddle about on tired, rubbery, numb legs. But I think the main debilitating symptom was my state of mind. It's like my brain short-circuited and I was in a constant state of panic. I ended up more than once (actually 3 times) at the ER having what I was sure was a heart attack in 2 cases and an adverse event to medication on the 3rd....only to find out I was hyperventilating and having a full blown panic attack.
The doctor wanted to start me on an antidepressant (the one that's got the commercial of the little blue bouncing cartoon pill) but I was too stressed out to take it. I kept my Xanax handy like a life ring on a sinking boat.
But then I started this trial and after the fear of the unknown was conquered, I have settled into a comfortable routine. I have regained my sanity (or what I know as sanity -- if anyone were to try my brain on for size they'd probably beg to differ about what sanity means). And something amazing started to happen. My body slowly started to cooperate.
I was reading a post on MSWorld.org (a fantastic group of MSers who have come together to share experiences, knowledge, and camaraderie) questioning why MSers can't hop. I read it and thought "what?! I can hop!" so I got out of my chair and tried it. To my amazement, my feet would not come off the floor no matter how much I tried to make my voice sound like Captain Kirk giving the order! "Jump!" I shouted. But my legs yelled back "I'm givin' 'er all I've got, Captain! She's not going to jump."
Well, that ticked me off to no end. I mean, I can understand the inability to be a cyclist or a marathon runner, but a little hop?? Come on! It's not that hard, even babies can do it. So that's when it began.
I forced myself to keep trying. At least once a day (always when nobody was around)I would stand up, bend at the knees, and will myself to spring high into the air. I never actually got my entire feet off the floor, just the heels would come up a little and want to catapult me forward. Having nothing better to strive for in my life at the time, I just kept at it. This went on for a week or so and I finally got both feet to come off the ground. I was giddy with excitement and wanted to show someone. I took my 9-year-old outside and said "Stand back and watch this!" When he saw me hopping he screeched and squealed and got all giddy with me. He said "Mom!! You can hop!!" and that was the best feeling in the world.
I didn't stop there, tho. I figured if I could force myself to hop even tho I had apparently forgotten how temporarily, then maybe it would work with running.
I have tried over the past several years, to run. It's hard to explain what it feels like to have forgotten how. I didn't think it was really that I physically could NOT run, but when I tried there was this hesitancy. I'd lift one leg and try to push off with the one in back like I remembered doing all those times as a kid, but...nothing. Three gigantic Frankenstein-like clumsy steps was all I could manage.
One month later, after trying day in and day out, I again summons my son to the back yard. I felt almost like I was his age again judging by how excited I was over something so silly....
I said "Come over to this tree and stand right here." I drew a line in the sand with my toe. "Don't cross that line, okay?" He just nodded and looked confused.
"I'm going to stand behind that line with you and when I say 'GO!' we're going to race to the fence over there."
Now the fence is fifty feet away and my son said "oh, su-u-u-u-re, Mom" like he was placating a crazy person. But in another 3 seconds I had counted down and shouted "GO!" and I was leaving him in my dust.
He was dumbfounded for just long enough for me to get a head start. Then he sprang into motion and quickly caught up, jogging alongside easily as I huffed and puffed and forced my feet to plod along with all my might at what felt like it should surely be superhuman speed.
We raced again 2 more times, each time he beat me easily. Then it was time to go back in and rest. I felt like I had just done the MS150 or something. He wasn't even out of breath. He gave me a big hug and said "Mom!! You RAN! and I'm so proud of you!"
Next time we went outside he tapped me on the shoulder and took off running shouting "Tag! You're it!" I just bet he's wanted to do that with me his whole life. It made me smile and take off after him. I never did catch him, but maybe if I keep practicing while he's at school I can surprise him again.
I don't know what it is. Maybe it's the Fingolimod, maybe it's God cutting me some slack, maybe it's just the change in attitude. Whatever it is, I feel better every day.
I thought I would share that story because so much about this disease is depressing and leaves you forlorn. A story of accomplishment can be uplifting and the positive energy can be contagious. Try doing something you thought you no longer could. You might just surprise yourself.
Sunday, October 28, 2007
Update on the clinical trial...
I know I don't write as frequently as I used to when the trial was all new to me, but I'll try to pop in now and then and update those of you who have been loyally following along.
The 20th was the two month mark and I have to say I have been feeling great. The ONLY possible side effect I have experience happened to me yesterday at the grocery store. I was in the meat department and suddenly felt like my heart was pounding. True, I had walked all over the store up to that point and I'm not as young as I used to be, so my heart rate probably was up a little.
But I felt dizzy and a little nauseated. I put my head down to make the swimming feeling go away. When I looked back up the whole grocery store seemed filled with white haze. I blinked several times and it finally went away.
Now, I'm no doctor and don't even play one on TV, but I'm guessing this may have something to do with the medication. At any rate, come tomorrow morning I will be calling my study nurse to let her know so they can document it.
I even still feel like my heart is beating too fast today but can't decide if that's just my brain telling me to freak out or if my heart really is beating faster. I almost took a Xanax just to see if maybe it was anxiety messing with me, but decided against it.
It's not like I can go to my local ER and say "um, my heart's beating funny and I've been taking these. Don't bother looking them up in your PDR because it won't be there." That would surely send the local ER doctors into a panic of their own.
I guess when you offer yourself up on a platter to Science you have to be prepared for Science to poke you a little.
Hopefully it's nothing and I can keep taking my little brown pills. I'm on month FIVE with no relapses!! For the first time in 2 years I made it past month three.
The 20th was the two month mark and I have to say I have been feeling great. The ONLY possible side effect I have experience happened to me yesterday at the grocery store. I was in the meat department and suddenly felt like my heart was pounding. True, I had walked all over the store up to that point and I'm not as young as I used to be, so my heart rate probably was up a little.
But I felt dizzy and a little nauseated. I put my head down to make the swimming feeling go away. When I looked back up the whole grocery store seemed filled with white haze. I blinked several times and it finally went away.
Now, I'm no doctor and don't even play one on TV, but I'm guessing this may have something to do with the medication. At any rate, come tomorrow morning I will be calling my study nurse to let her know so they can document it.
I even still feel like my heart is beating too fast today but can't decide if that's just my brain telling me to freak out or if my heart really is beating faster. I almost took a Xanax just to see if maybe it was anxiety messing with me, but decided against it.
It's not like I can go to my local ER and say "um, my heart's beating funny and I've been taking these. Don't bother looking them up in your PDR because it won't be there." That would surely send the local ER doctors into a panic of their own.
I guess when you offer yourself up on a platter to Science you have to be prepared for Science to poke you a little.
Hopefully it's nothing and I can keep taking my little brown pills. I'm on month FIVE with no relapses!! For the first time in 2 years I made it past month three.
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