Thursday, June 19, 2008

Put your feet in the stirrups and join me on my wild ride

I debated whether or not to post this as it contains some very private details that I don't know if I want to share with everyone on the planet and just shoot it out there into cyberspace never to return. They say you can't unring a bell. Then I thought long and hard about what this blog means to me and the reason for starting it. It was to document my experience in this trial and put *everything* down. The good, the bad, the ugly. The only thing is, I have built up quite a following of readers and many of them are in this clinical trial or contemplating getting in and I now feel an obligation to those readers to provided all the details. So, this leaves me to share with the world a little known fact that I maybe wasn't ready to share, but it's pertinent to the story....

I have had Herpes for nearly 3 decades. There, I said it. So please don't judge me, just realize it is a virus and, as we all know, has been playing a huge roll in the latest (ugly) news about Fingolimod. It's also why I have had a lot of trouble just believing that everything's copesetic and going to be just fine.

Which brings me to my latest news. I worried myself right into an outbreak. Stress does that with Herpes. I discovered it upon waking yesterday morning and you want to talk about a hypochondriac in a panic. I was so freaked out I was trying to recall where I last saw my Xanax bottle that I quit using nearly a year ago. (Nearly means the exp. date hasn't been reached yet, right??) And then, once I found it, I started freaking out about the drug combo with this new *angle* and the UTI etc. so I ended up not taking it but instead just ride out the shakes and the hyperventilating and the feelings of impending doom.

I had told my trial coordinator on Visit 9 that I thought this Fingolimod was working against the Herpes, too, because I hadn't had a single outbreak since starting the trial. She said it was probably because the Fingo had calmed my whole being down and my mind was in a happy place and together mind and body were in sync (I had no clue a boy band was in my body). Before that I was having an attack whenever I had an MS attack -- especially one for which I was receiving steroids.

So, at this point I am feeling stressed but thinking that perhaps the other, less fortunate patients who didn't fair well and made history last week didn't react to the virus swiftly enough or something. I was going to be proactive and get this thing tackled head on. After all, the study nurse said that if I have an outbreak there are things we can do, including start an antiviral therapy.

Having had this stuff for nearly 30 years I had it long before there were "antiviral" medications. And until the latest slew of TV ads about them I didn't think there was any way to fight it except slap a little Blistex on for pain and just ride it out. The virus has certainly calmed itself down and worked out a routine in my body, so up to this point we kind of had a truce or understanding. I conceded that it was here to stay, and it, consequently, decided not to make any huge dramatic flareups but to emerge ho-hum, hang out for several days and then go back into hiding.

So, when I awoke to my day of panic yesterday, and then tossing the Xanax aside, I glanced at the clock. It's only 7 am and the Research Dept. is not yet open. I get the trial nurses phone number (who am I kidding? Ya'll know it's programmed into my cell phone on speed dial, right?) and leave a frantic message.

Centuries go by and a new Ice Age comes.

When she calls, I tell her the news and she spends the next 10 min. trying to calm me down and reassures me that this can be dealt with and everything will be fine. She DIDN'T say "lots of our patients have Herpes outbreaks and it's no big deal, they all do just fine". The only 2 people I have heard about didn't end up *just fine*.

Her strategy was to have me call my primary care doc to see if he could get me in to document that it was indeed an outbreak. We ended the call so that I could get on the horn with the PCP and see if they'd fit me in.

Nope, not gonna happen. He's out of town through Friday.

I call her back. She has meanwhile spoken to the head investigator, my neuro, who is saying I need to be seen by a GYN instead since this whole thing deals with the nether regions. She asks me if I have one. A GYN.

Funny thing about that. Mine retired a couple years ago and I have been so preoccupied by all the MS stuff in my life that I have neglected to care for the other important stuff. And seeing a GYN is more than just routine for me because I had a hysterectomy 9 years ago -- 3 months before my MS diagnosis to be exact. I had cervical cancer.

A new doc has taken over the practice from my retired one, fortunately, and I got on the phone to see if their office would squeeze me in. The study nurse, since talking to the neuro, had taken on a different tone, and while she was still pleasant and reassuring, she did say that if I spoke to the new doc and couldn't get in, to give the number to her and she would call and explain the urgency to them. (HUH??? URGENCY??? I am the only one allowed to use that word and it's because I'M the HYPOCHONDRIAC! Medical personnel who dare to utter the word "urgency" scare me straight to the death which I so fear.)

I call and they have an opening that day (yesterday). When I get there, the next issue is who is going to pay. I have Medicaid but only recently got it and the Medicaid office decided to assign me a PCP whom I have never met at a clinic here in town that I have never been to. I called the Medicaid office and had that changed to my PCP I have been with for 10 years. Only catch is it won't take effect until July 1. *sigh* I tell them to call the trial coordinator (also know as the study nurse in these stories as it takes less typing to call her that.) because they told me Novartis is going to pay for the visit and related testing.

Right now paying for it is the least of my concerns as long as they will see me.

I get in there and finally meet the doc. A very nice and gentle man. He spent over an hour with me and had patients lined up waiting. He was even apologetic at the end of the meeting that he had to cut it off due to others waiting. You don't see many docs like that nowadays...or maybe they are all like that and it's why I have to wait forever -- they just don't spend that time with ME usually.

We went over several things. I explained how Fingo works to him and showed him the bottle. I said "it sequesters the T-cells in the lymph glands to keep them from doing their MS feast on my myelin". Then he said "so, it's an immunosupressant?" and I agreed.

He said that while the Herpes was an issue that needed to be dealt with swiftly in light of the recent news I told him about, he was actually more concerned with the HPV I most certainly have. Another virus who's made my body it's humble abode and is thought to be the culprit in my cervical cancer. He tells me that HPV proliferates in immune compromised individuals and wants to start seeing me every 3 months while on this study drug. He says HPV resides in my tissues even though their favorite target -- my cervix -- has been removed. He said it still lives in me and can attack what remains of my female parts. Now, because I'm on Fingolimod, it's especially imperative that we keep it monitored.

Hoo boy. I hadn't thought of worrying about that.

Then on to the Herpes. He couldn't see it, but did a culture or whatever you call scraping me with a stick. OUCH! And then we discussed treatment. He said he was in favor of keeping me on a constant once a day treatment due to the fact that I was on the study drug, but that he was calling the study nurse to go over it all with her before the treatment was decided.

While he was doing the pelvic exam he was mashing down on my right side, grabbing my ovary which is still there and asking "does this hurt? Because it's quite enlarged and feels like it may have cysts on it. Let's get an ultrasound of it and see what's going on." Oh my GOD! What next??!!

I'll tell ya what next! --> He left to go call the study nurse and create a plan of action. He was gone for quite some time and I was wishing there was a drinking glass I could press against the wall so I could better make out the words being said as all I could hear was a muffled voice. Dang! Guess I'll have to wait.

He came back in and said "Here's what we are going to do, but I want to explain something to you. We decided to put you on a 5 day course of 5 pills a day (wow!) of Zovirax. It's an antiviral used to treat outbreaks. We aren't going to put you on a constant treatment at this point, but rather just treat this outbreak."

I say "bring it on!" and he says "well, there is a catch. See, this medicine is known to interact with some other drugs such as several chemos and other immunosupressants, but because it's never been studied with Fingolimod, we don't know how you will react or if there could be any serious drug interactions."

Could this be any MORE of a soap opera??!! I tell you, I should break this off into separate stories each with their own cliff hangers and wait until the fall to let you know what happened in the end.

My reply was "I'm already a guinea pig that has been joined by a couple thousand other guinea pigs testing this drug. I guess I could take a giant step forward from that group and be the only one with a hand raised saying 'I'll be a guinea pig's guinea pig and see what happens.'"

At first, truth be told, before I said okay, I said "Should I just get out of this trial and off the drug? Is this all too great a risk?"

I have to give the doc credit. He'd never met me before and had all this dumped in his lap only a short time before, with his brain still processing it all. He responded by sitting down, putting a hand on my knee and asking "How has it helped your MS to be in this trial?" The nurse by his side silently offered me a tissue as the tears sprang forth.

"I can't tell you all the ways my life has improved! I am almost a regular human again -- or so I thought before I walked in that door! There's no way I want to quit, it's just that all these complicated issues scare the crap out of me."

He said "As well they should, but you are doing the right thing by dealing with them head on. I say, if your MS has improved that much then it's all worth the risks. We just have to form a team and everyone stay in communication on this. As long as you are closely monitored, everything will be alright."

I warned him right up front that I am a professional hypochondriac, so he wouldn't tell me what adverse events to watch for with the drug combo. Rats! Me and my big mouth!

His office lady scheduled a follow up for me next Tuesday and wrote me an order for the ultrasound (I keep forgetting the Bonus Prize in all this -- a lumpy ovary.)

I dropped off the Rx and get home to find out the imaging place that's supposed to do my ultrasound today can't do it because Medicaid wants an authorization from my PCP on record. Remember I said the change I made to the correct PCP won't be effective until July 1? Well, they want some doc I have never seen to okay the order for the ultrasound. When I explain the problem they tell me of another imaging place in town that can do it without the prior auth. and I call them. I get an appointment for July 27th. I call the GYN's office to let them known and she says "that's unacceptable. Doc wants your results when you come next Tuesday." Wow. The seriousness of all this stuff is starting to sink in. Can't wait another week?? Oh my GOD! A hypochondriac's worst fears are starting to come to life....but I'll be okay.

So that ends the story thus far. You know as much as I know at this point.

I got up half way through this story and took my very first pill of the 5 I have to take today and it seems like I never missed a beat recounting the story, right? Well, the magical thing about writing is that you can take time to get up from the chair, make a half a peanut butter sandwich and wash it down with a bottle of water, search the house from top to bottom for that damn bottle of pills you JUST got, dig through last night's trash fearing you threw them away with the KFC garbage (because after news like that who can cook?!) and then find them right where you saw them first but mistook them for your Doxycycline. I wash the garbage from my hands, feel my head spin with the thrill of anticipation, and wash down the first pill. Came back to write for a while and only got up once to have an urgent bout of the runs. Was it the nerves, or medicine? Only my hairdresser knows for sure.

So, that concludes this exciting episode...stay tuned for next week's "See that thing on your untrasound image?" episode.

All you people following along who are on, or want to be on, the Fingolimod...hang in there. Even though it all sounds scary, I feel like everything really will be alright in the end. It's a blessing in disguise that I had this little Herpes outbreak. I would have never known about the HPV angle or the "cysts" on my ovary. Someone's watching over me. I think it's my Dad looking down and wrapping his arms around me from heaven. When I went to KFC I pulled into the parking lot wishing I had the camera for I saw the most beautiful rainbow I'd ever seen in 47 years of being in this skin. As I drove home it was ahead of me all the way, and when I got to my street, I kid you not, that darn rainbow ended not at a pot of gold, but on my house! Someone's watching over me.


  1. Wow!! Hang on in there ms guinea pig. You are bravely blazing a path which others may someday tread. It sounds like your trial/neuro team is watching out for you, even insuring that other professionals join your team. I agree - someone is watching out for you.

  2. Jeri, I can't imagine how distressing this entire situation must be for you and your family. You are an inspiration with your candor, and the way that despite all that you are going through, somehow, you still retain your sense of humor.

    Please know that there are so many of us who are thinking of you. David and I will be keeping you, and all those involved in our prayers.

  3. Even in the seriousness of the situation, you keep your humor intact! Bravo...

    Zovirax...took it for my shingles on my arm this past year. Good news is, you are now protected from getting ANY virus, like the flu (briefly)...bad news? Well, reread your own post. Sucks, kiddo...sorry.

    Linda D. in Seattle


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