Hair's Lookin' At You, Kid

So I've been gone for a couple weeks. Not posting, I mean. But most of the people who even read this drivel were at Christmas dinner anyhow. You know who you are.

Now I'm back. I have, in all honesty, been trying to think of something to blather on about and I've decided I've found it. I had one of those Eureka! moments and I wasn't even vacuuming at the time.

I visited an MS message board where they were asking about others on Copaxone suffering from hair loss. If you have been a member of any MS forum for any length of time, you would have noticed the ebb and flow of the tide that washes certain topics into the forum and then back out again. Always being brought up by someone who isn't aware of the pull of the moon on these very questions.

So the topic opens with one person, whose hair is falling out, being suspicious of her medication (Copaxone) being the culprit. I remember back when I was on it, I also thought it was responsible and I read and reread the package insert, but nary a mention of that as an adverse event was to be found.

The topic continued to grow, with other MSers chiming in about how they, too, suffer from the hair on their head being less than the hair on their floor. Not everyone was on Copaxone, however. Some were on Rebif, others on Avonex, and even others that had never been on any MS disease modifying drug.

I read all these posts and one thing struck me as a common thread among us. Um, we all have MS!! (I swear Einstein was on some branch of my family tree!)

For my own personal battle with hair loss (documented by plumber receipts) I look back on it and can say, without a doubt, that it didn't matter if I was on medication, off medication or switched to different medication. The one steady factor that remained was my hair filling the brush -- and the drain -- at an alarming rate.

I could never commit a homicide (and sometimes this is the one thing that stops me) because there's no way to not leave my DNA behind. My hair would be everywhere. Heck, they wouldn't need to send it off for DNA analysis and waste all that taxpayers' money... they could just follow the trail back to my head.

So I had to find other hobbies.

The really amazing thing is not what my full length robe would look like if I had saved all that hair and knitted one, but the fact that my head is still covered with a full, luxurious mane. I bet, if you could zoom in on just one hair sprouting forth from my scalp anew, you could watch that sucker grow, kind of like a Chia Pet.

After going through several vacuums which would break and crap out, I had decided that appliances are no longer made to last and gave up. We removed most of the carpet in the house and that's when I was amazed to discover that the floor now had a new carpet after just a short time. And it was a long brown shag. No, wait, that's my hair.

Why, if it's so prevalent in the MS community for us to be losing our hair, (but it's a fact independent of our drug use), isn't anyone studying this to find the root (heh heh) cause?

Maybe it's a simple thing like a vitamin deficiency that, once addressed, would not only cure our hair loss but also our MS. Wouldn't that be amazing?! Of course that's a reach. But something is causing the hair loss. And something causes MS (but they don't know what). Maybe that's why I was never very good at science. If they don't know the cause of MS and they don't know the cause of hair loss, and I have both, then they must be caused by the same thing. I tend to reach conclusions in an unscientific way that never got me an A in class.

And wouldn't it then be funny in a cruel sort of way, if the folks who don't *think* they have MS but do have thinning hair, read this and started to worry?

So, as I sit here idly running my fingers through my hair (and then collecting the pile that came out to throw away) I wonder how to wrap this up. I think a list is in order...

List of tips to manage hair loss:

• If you don't want to pay the plumber every 3 months to come unstop your drain, brush your hair BEFORE you shower.
• Wear a hair net when cooking.
• If it's long enough, keep it in a pony tail or braid. The ones that come loose have no escape, and you will leave less of a trail (especially useful if you're a homicidal maniac and don't want to get caught).
• Quit trying to find the answer to why it's falling out. The stress of worrying about it can make your hair fall out.
• When all else fails, blog about it. It will flesh out a post nicely. Kinda like that essay you had no desire to write but, nonetheless, had to be at least 1000 words.

The phone call

I got a phone call yesterday that scared the wits out of me.

It was my clinical trial coordinator calling in reference to Tuesday's visit.

Like my mom, she takes forever to get to the point.

She starts out by saying "we got all your labwork back from your visit the other day..." and I'm thinking I'm about to find out something terrible. That maybe my liver enzymes were too high and I was going to be pulled from the trial. GET TO THE POINT! I wanted to scream.

Then she said "but something was wrong with your hemoglobin."

I'm enough of a hypochondriac that I know that means "blood".

I sit down with a "whump" as the air goes out of me and I collapse on the couch. I know I must have been stark white.

"Something's WRONG with my blood??" I ask.

"Yes, it was clotted and they couldn't perform the tests on it. It will have to be redrawn," she said.

"Whew!" was all I could say. "No big deal! Heh. When do you want me there?" I ask.

"Whenever you can make it up this way. Perhaps you need to come up to go Christmas shopping?" she said, trying to make the 4 hour round trip for a thimble full of blood sound appealing.

Little did she know that we are so freaking broke this Christmas that I guess I should bring my son with me for the trip so he knows that the gas money used to provide his *view* on the way is all he's getting from me this year.

I'm going back Monday and all I can say is Loreen better be back at work. She's the only one who can stick me and get blood the first try.

I knew I should have held out for making Novartis pay my gas money.

My first report card!

I woke up today and checked my email because my name is Jeri and I'm an internetaholic. For once there was a Google alert about FTY720 that wasn't from my own stupid blog.

I tore open the envelope (not really, but it sounds more dramatic then "I clicked the little line of text furiously") and found the first report from the Phase III clinical trials (that's me they're talking about).

Here's the whole story (click here).

I read it with this odd sense of pride mixed with curiosity. Like I was going to see my name mentioned or something. Or "1 patient experience this. And this, and this, and oh yeah, this."

"Her data was deemed contaminated by the fact that she is a scientifically proven hypochondriac so anything that spews forth from her facial orifice can only be taken with a grain of sodium."

Basel, December 12, 2008 - Initial results from the one-year Phase III TRANSFORMS study show the investigational oral compound FTY720 (fingolimod) has superior efficacy to a current standard of care for patients with relapsing-remitting multiple sclerosis (MS). Patients on oral FTY720 experienced significantly fewer relapses than those treated with the injectable medicine interferon beta-1a (Avonex®*)[1].

The study, the first one-year head-to-head Phase III trial against a standard of care in MS, met its primary endpoint for both doses of FTY720.

The annualized relapse rate at one year for patients given FTY720 0.5 mg was 0.16, representing a 52% reduction compared to a relapse rate of 0.33 for interferon beta-1a (p<0.001). The FTY720 1.25 mg dose also showed a significant reduction in relapses with a rate of 0.20 representing a 38% reduction against interferon beta-1a (p<0.001). No statistically significant difference was seen between the two FTY720 doses[1].

Comprehensive analyses of the TRANSFORMS study data are ongoing, and detailed results are planned to be presented at a leading scientific congress in 2009. Regulatory submissions remain on track to be completed in the US and EU at the end of 2009.

They didn't mention me at all. Go figure. They referred to us all as a group. No, more a statistical number. After all we have given of ourselves over the past year. I feel so cheap. Like I was just another notch on the ol' test tube.

Of course I'm kidding. I'm so excited I'm approaching giddiness.

So, I'm no rocket surgeon, so those percentages are a little confusing to me. I understand the part about Avonex having a 33% reduction in relapses. That's pretty straight forward. So, if I had 3 attacks a year I could expect to only have 2 while on Avonex, right?

The part I don't understand is the "52%" reduction in relapses that Fingolimod has over Avonex. It would seem to me that number is a percentage of Avonex's number. It's one of those math problems I always got wrong in school, so bear with me.

If Avonex users had 33% less attacks than someone who was on no treatment, and people who were on Fingolimod had 52% less attacks as compared to Avonex, then really the efficacy percentage for Fingolimod is what? 49%? I have no clue what that data told me. All I know is that it sounded good, right? It's good news?

But I'm bound and determined to understand this, so let's go back to school and figure it out....

If a train carrying 3 relapses is headed toward a tunnel going through a forest where a tree fell when nobody was around at a speed of 25 mph and Jane has a bottle of Fingolimod, how many relapses would still be on the train when it reaches the tunnel, IF nobody has yet claimed to have heard the tree fall?

Oh well, forget it. I thought I was getting someplace with all this, but I guess I'd just better be happy to know it *sounded* like good news. Fingolimod had a big number and Avonex had a smaller number. Big number good. I think.

Is it any wonder at ALL that, when my 10 year old came home with compound fractions to multiply, we ended up having to Google it? I will never forget, from now until the day I die, that it's numerator times numerator and denominator times denominator. I think.

Since Avonex is one of the current standards of treatment for MS, and many, many people take it hoping to lessen the severity of their disease, this is actually GREAT news about FTY720!!

Looking at the data report of the adverse events, I can now see why they were making such a big TaDoo over my little black moles I'd had all my life. 7 cases of skin cancer. That's nothing to sneeze at.

And I finally have clarification about the one poor fellow who ended up in a coma after the viral encephalitis. He must have died. It's rather sobering to realize that clinical trials can sometimes go terribly wrong.

That's the whole reason for us lab rats to volunteer. We offer up our bodies to be subjected to all the unknowns so that the FDA can say "Nope. Not safe for human consumption." and the masses are protected from something that might have hurt them.

I am doing it for a way less altruistic reason...I wanted something to slow this monster down for ME. If that ends up helping the rest of you, then I'm thrilled. But believe me, I didn't lie awake at night before entering the trial, tossing and turning because I wasn't helping blaze a trail to help all of MSkind. Nope, I was tossing and turning trying to get comfy when my spasticity and neuropathy were driving me nuts. I did it for me.

I'm just so happy that maybe a lot of other people will eventually be able to enjoy the same level of benefits I have from this stuff. From what the press release says, it's on track for submission to the FDA in 2009, so really people, it's not far off.

It really ISN'T the old "in the next 5 years." spiel we've all heard for the last 10. There really is a pill coming...and soon! Just hang in there.

Visit Number 15

Gosh, I'm sorry I've become such a slacker about blogging. I hope I haven't lost my *knack* whatever that was.

I had visit number 15 on Tuesday and everything's still A-OK. AND...I've lost 4 lbs since my last visit which was only last week. yay! Removing your cell phone and not wearing a jacket really does help you lose weight!

I had the eye exam first and, since it is a teaching hospital, the doc had some students helping out. The first one was a lanky, shy young man who sat in on the contrast test. That's the one where you start out reading an eye chart that has black letters on a white background from 10 feet away, and then the contrast progressively lessens until you are reading glossy spots on dull white background. If the light isn't shining off it just right it's darn near impossible.

I mentioned this and she readjusted the chart so it wasn't reflecting the light at me and said "oh! we can't have any advantages or the test won't be an accurate representation." I have such a big mouth. The good thing is that by the end of the test I darn near have all the lines memorized (you do it with both eyes and then each eye separately). My luck is that I'm probably getting all the same ones wrong over and over because of it.

Then, I usually get the drops all and once and am left to *soak* for 10 or 20 min. This time was a little different. I got the work out with "how many fingers do you see" in my peripheral vision and then the color blind eye chart. I mentioned to this new student testing me that the tests assume I can both count and read. She just smiled at me nervously. I think they don't teach them how to handle smart-assed patients. Well, I think that's an important part of their training so I set about to make sure she learned something on Tuesday.

She put the numbing drops and the fluorescing yellow stuff in my eyes and then announced "I'm going to check your pressure." She didn't mention that the pressure she was really testing was to see how high my blood pressure could go before my eyes popped out of my head.

She apparently was new to the eyeball pressure test and when I was expecting the glowing purple ring to kiss my eye and back off, she had other plans. It made contact (which I couldn't feel on the surface) and then stayed there for a very long time. Then she'd back off and fiddle with the tip of the thing that goes against my eye trying to adjust it or something. I pulled my head back from the contraption you're supposed to keep your chin and forehead pressed against and saw her flicking her finger over the end of it repeatedly.

Without a shred of humor I asked if she planned on poking me in the eye again with that thing now that she mauled it. Apparently, I'm a stand-up comic who missed her calling because this girl actually laughed. When she realized I was serious, she got a Kleenex to wipe the tip off because any good doctor knows that a Kleenex is all you need to sterilize something and get all the cooties (that's a medical term) off it.

I sighed and presented my eyeball for another round of poke-her-in-the-eye. I actually could feel the additional pressure of it pushing against my eye. I mentioned to her that one time, years ago, I ended up on the floor of my eye doctor having smelling salts wafted under my nose to revive me from passing out when I was about to have the pressure test done. I think that made her nervous. She kept saying "You're doing fine. You're doing fine."

I told her "No, I'm doing excellent considering you AREN'T doing fine." By the time she moved to my left eye, she had it down. That took a whole second. I think I scared the poor girl into remembering something she read in her textbook or something.

After she was done, she put the dilation drops in my eyes and handed me a tissue, asking if there was anything she could get me. "A cold pack and an eye patch would be nice." She laughed and it was okay this time because that part was a joke....sort of.

The first student, the shy guy, came in and said he wanted to shine a light in my eyes and have a look. I said "sure."

I told him I wished I could do that. He said "what's that?"

I said "I wish I could look inside an eyeball. It must be cool to see, like a big empty ball that's all pink with veins and gunk."

It was like I had found the key to unlock this kid's personality. He started expounding on just how cool it was. You could tell he was going to make a terrific doctor just by how passionate he was about the eyeball.

We discussed the optic nerve and I was telling him that I had read in the last year or so about how it was considered to be the predictor (or maybe it was the gauge, I forget) of the severity of an MS patient's disease progress. The nerve apparently thins as the disease progresses. Don't ask me for the details because I have cognitive issues that go along with my MS and therefore all *facts* that enter my brain go through a process of being reformed into unrecognizable shapes before re-solidifying as something now carved in stone that has heretofore never been heard of. So, forgive me if I got the facts wrong about that optic nerve statement.

The student was fascinated and I'm sure he's going to get something wrong on his next test from having had that conversation with me.

The doctor came in and the rest of the test went smoothly. I was told again that I have dry eyes and to be using the tear drops. I keep forgetting that when my eyes feel sore and scratchy that it's because they are dry.

I have learned that other Fingo Heads (from our secret society meeting group with the special knock) also have dry eyes. At least one other person mentioned it. So now I'm wondering if it's a side effect. Fingolimod sucks the moisture out of your eyeballs. Hmmm Well, if that's all it does on the bad side (besides force me to eat dessert every night and slack off on exercising thus gaining weight) then I am okay with that.

Now, remind me that I have a whole 'nother post to write about the EDSS test. I hope my procrastination doesn't trump my memory so I don't put it off so long I forget the funny parts.

Back soon...I promise.

The Hiatus Ends

I can't believe I have neglected to a) write anything or b) read anything in the blogosphere. That's gotta come to a screeching halt. I vow to write more often if for no other reason than it keeps my hands too busy to stuff food into my face. I have to lose at least 10 pounds (preferably 20) in order to fit into my jeans without the undesirable "muffin top" effect.

I'm wearing my "fat pants" lately and they are getting way too tight. I remember, at the start of this clinical trial 15 months ago, I purchased 2 new pairs of pants and they were too big. I hate trying things on in the store, but I also hate taking stuff back. I must have known this day size was coming... those 2 pairs of pants are all that stands between me and wearing my bathrobe 24/7.

I asked about the possibility of weight gain being a side effect of Fingolimod once and my trial nurse sort of laughed at me. She thinks it's more a side effect of my quitting smoking and not quitting putting my hand to my face. Maybe a carrot stick instead of a heaping spoonful of pumpkin pie with Cool Whip might help.

But the pie was on sale. I checked the carrot sticks, honest, but they're still full price. Pie and Cool Whip were BOTH marked down.

I never could understand, back when I was a smoker, how people couldn't realize they were gaining weight and just DO something about it before it got out of hand. I had heard horror stories of how people quit smoking only to balloon up. And I would think to myself "well, duh! Step away from the fork!"

But I never knew how good stuff tasted when I was a smoker. It was like I had a nicotine blanket on my tongue that kept me from reveling in the bursts of flavor, the incredible richness, the soft, subtle hints of citrus...and that was just my chewable vitamin.

I'm a total slave to flavor now. Nicotine no longer rules my life...Dove Chocolate does.

But how do you go cold turkey on food? (mmmmm cold turkey. be right back.)

Anyhow, as I was saying, how can you quit food? You HAVE to eat, otherwise you die. It's not at all like quitting smoking. When I did that, I just put them down, curled up in an achey miserable ball for 3 days and emerged from my self-induced nicotine withdrawals as a person who will forever be a smoker deep inside, but who will never take another drag as long as I am living. I have quit smoking before and started back up again before...now I know that the key to staying a non-smoker is to practice the "non" part more than the "smoker" part.

With cigarettes I didn't have to wander the aisles of the tobacco store choosing from less satisfying brands that were better choices for me. With food, I struggle with ever single item that I pick off the shelf. I debate silently in my head (because I don't have a Blue Tooth headset so people would think I was crazy if I argued with myself out loud) about if this item is a) a healthy choice b) a nutritional vs. comfort choice c) worth the money I'm blowing on it...etc. (I could go through a whole alphabet of choices I argue with myself but you get my point).

I've never in my life experienced guilt associated with food...until now. When I get up at 3 am and can't get back to sleep and find myself standing in front of the fridge I wonder if the rest of the family can here me and knows what I'm up to.

And it's not even like I'm that much overweight. I spent my teenage years being painfully thin, never hitting 100 lbs. until I had my oldest boy at 21. Then I stayed between 100 and 110 for the next 20something years.

When I had my second boy at 38 I went through a period of time when I had trouble losing the "baby fat" and when I asked my GYN about how hard it was to shed the extra pounds, his only response was to give me a wry smile and say "you aren't 21 any more." Gee thanks, I'm fat AND I'm old. And what do I owe you for pointing that out?

But now I've hit a new record for me. No longer having the crutch of nicotine to quiet hunger pangs, I give in to them instead. Without the possibility of pregnancy to explain away the extra pounds, I'm now hovering at 130. When I went to the doctor last week and stepped on the scale (admittedly, fully clothed with some apparently super heavy sneakers on) that was when I was faced with the new number with which I now wrestle.

And it's not just about the pants vs the pumpkin pie. Oh, that it were that simple.

It's about self-image vs everything I eat. It's about seeing a 10 lb sack of potatoes and visualizing 2 of them hanging around my waist. It's about my knees not enjoying the new me. 20 pounds can tire a person out more.

So, here I sit at nearly 6am, in my bathrobe because that's acceptable at this time of day, wondering when it will be alright to eat breakfast and swearing that this is going to be the day I put down the fork and liberate myself from the prison of my refrigerator, and swear off eating as a hobby and only do it for necessity.

But it's wrong to let food go to waist waste, and there's 3/4 of a pie in there that nobody's going to eat if I don't.

To all the overweight people out there, please accept my humble apologies as a formerly model-thin woman. I now KNOW what it means to struggle with food. And it's NOT an easy thing to get control of.

If anyone has any secrets for miracle weight loss (other than all those nice people whose emails end up in my spam folder for some reason) please, by all means, do share. Of course, if you DID have a secret and you shared it, I'm sure you'd make millions, so that means nobody has any miracles or I'd find it on the shelf at Walgreens.

Hey! All this random typing has kept me from eating for over half an hour. Maybe there's something to this?

I googled this:


I'll drink slightly less than half a Starbuck's Latte to that!

Sorry for all the whiny ramblings after such a long hiatus, but I do tend to blog what's on my mind and now that I got that off my chest, I can get on with the more important posts... like sharing pictures from our Cub Scout trip to the Alligator Farm in St. Augustine, FL.

I've been meaning to get to that for 2 weeks now, sorry.

Oh, and I've not had an MS attack in nearly 20 MONTHS!!! December 4 will be 20 months. I'm so freaking happy I'm doing the Snoopy dance.

Nice to talk about MS as an afterthought. :-)

See Tracy?

I told you it was "branno".

A big warm welcome to the funny lady over at Living Life With Sarcasm, Kids, and MS because MS without sarcasm is like a day without sunshine.

Just another checkup

Wow! I can't believe how the last 2 weeks have just flown by. I don't even know what I've been doing lately. Heck, I have such issues with short term memory loss that I can forget what movie I'm watching when the show goes to commercial. Kinda scary.

I neglected to mention this at my appointment yesterday because, well, I FORGOT.

It was a 2 hour drive to Jacksonville only to have blood drawn, pee in a cup, and have my vitals taken. Then a 2 hour return trip. I was told it was to be the shortest of all my visits. Next month I'll have the dreaded eye exam and the PFT along with the EDSS and EKG. And, in keeping with the theme of all that, I think I'll take some alphabet soup with me to have for lunch that day.

Anyway, at the checkup I found out that I'd lost 2 pounds (Squeeeee!!!) right after she noticed the scale wasn't set right and cranked the knob back 2 lbs. (I'm claiming the weight loss regardless).

I also found out that my HR was 72 and my BP was 104/68. I left there feeling pretty good about myself -- like I passed some kind of test with great marks even tho the scores were beyond my control.

What made me feel even more like a winner might have been the fact that I was awarded a *prize*. The nurse came in and presented me with a black sling style backpack with the TRANSFORMS logo on it. (transforms is the acronym for the particular trial I'm in.)

I found the logo quite cute as, at first, I thought the "O" had the man in the moon on it. Upon closer inspection I could see it was a person in profile and a hand tossing a pill into their open mouth. Novartis seems to be really banking on the attraction of this med being in pill form. I guess it's not too hard to imagine that a bunch of people sentenced to stick themselves with needles the rest of their lives might dream of one day taking a pill instead.

Anyway, inside the pack was a water bottle with the logo on it and a pair of headphones.



The headphones were an enigma (better than being an enema I suppose) due to not having anything to listen to. I didn't want to question it, tho, because after all it was a gift.

But, my smart-assedness got the better of me and I couldn't resist.

"Oh nurse?" I yelled down the hall.

"yes?" she looked back quizzically.

"The iPod fell out of my bag you gave me."

After having undergone a year of my smart-assedness, she knew right away I was joking.

"Actually, they aren't giving away iPods with those bags."

"I know, I was just joking."

"They're giving DVD players, but they haven't arrived yet."

Now it was my turn to wonder if she was joking. A quick scan of her facial expression coupled with my past experience of her use of humor told me that I was indeed going to be getting a DVD player.

"Cool! You know I was only joking about the iPod. I never expected they'd give out DVD players!"

"Yep. They should be coming any day now. We'll have one for you on your next appointment."

So, what I at first thought was cool started to upset me. I mean, if they can go giving a couple thousand people DVD players for being guinea pigs, it can only mean one of two things. They are about to tell us we are all going to die from some heretofore unknown irreversible side effect, or they are going to charge out the nose for Fingolimod when it hits the market.

Maybe they'll have to call the pill "Mykidscollegefund" or "InLeiuOfMortgageThisMonth" or something fancy like that.

I did say that it would have been better to give these out on Randomization Day so that we'd have something to do during that 6 hr. observation stay.

She said "actually, there is a trial that's still recruiting, so some participants ARE getting these for Randomization Day."

She couldn't have given me any better news. By telling me they are still recruiting, she basically just told me that I'm going to be getting my meds for free for a while.

I don't have to start paying until the trials are all over and the FDA approves it.

By that time, maybe I can find someone to buy the DVD player so I can get a day's worth of meds. I better keep it New-In-Box.