oops, i better catch everyone up. (i tend to get carried away- when i was working, i'd start talking "agency speak" and throwing around acronyms and advertising words like they were popcorn kernels while everyone looked at me blankly.) natalizumab, aka tysabri is the new kid on the block of MS treatments. like the existing (4), it is also a disease-modifying monotherapy treatment, but instead of a self-injection, it is given monthly by an iv transfusion. but that's not the only differentiator. it beat their pants off. data from the 2-year trials, resulted in 42% reduction in disability progression and 67% reduction in relapse rate. that is HUGE! (Note: You can find more information on the nitty gritty towards the end of this posting.)
allergic reactions associated with tysabri have been generally mild (only 7%), such as hives, dizziness, chills, low blood pressure, nausea. for some reason, i always fall in that 7%. of anything! and those of you that have ever been nauseous before know what i'm talking about. it's the WORST! unfortunately, nausea has plagued me since the 1st infusion. honestly, i'd rather vomit for a straight hour than feel like i'm about to lose it at any moment for a week straight. (i've had other side effects too, but somehow dizziness, itching and chest pain seem to pale in comparison.)
but with the drug being fairly new, and with the percentage of people with side effects being so low, my DC neurologist was hesitant to give me any medication- i never did understand that reasoning. the first infusion they said "well, wait and see if it goes away." (that was a blast, let me tell ya) the second infusion, the nurse wrote a script for reglan, but told me to "only use it if i had to" and that the side effects were "worse than the original complaint." (hmmm, this was a quandary)
so going into the 3rd infusion this morning, i was ready for a fight. i had decided i was going to stand my ground and DEMAND medication for the nausea. but i didn't get the chance! the oncologist and his nurse didn't even blink, and quickly researched the right med to pump into my iv. i was momentarily stunned- doctors' offices aren't supposed to be nice. what the hell! (they gave me aloxi, and it should stay in my system for 5 days.) btw ML- the oncologist had his medical degree from jefferson!
the place was jumpin' and apparently i've been spoiled with private rooms the past few months. all in all, the pre/post observation plus medication time takes about 3 hours, so i had a couple roommates that came and went during that time. one had zero manners and triggered one of my pet peeves, a term i call "gutter english." give me a break- we'd been up since 6am, had to drive the 1+ hr/back, sit through a late consult and quite honestly, i don't LOVE getting poison pumped into my body for hours at a time. a little peace & quiet shouldn't be too much to ask. but i was treated to a chocolate Arby's milkshake on the ride home so i clearly got over it.
when the drug switch was going down, i was told by my DC/Georgetown neurologist (Dr. Wallin) to expect a full 4-6 months of treatment before any results- if there were any at all. to be honest, i didn't hear that end disclaimer very much, and as magic # 4 comes over the horizon i find myself more and more hyper focused on my condition. i keep telling everyone else (and myself) that i don't expect to wake up one morning, throw my legs over the bed, and be cured... but... there's that little part of me that does. ms attacks come on so suddenly- it's really hard to make people understand how quickly it can be. for example, i can tell you the exact date, the exact time, the exact place, that the shooting and stabbing pain in my legs and feet began. it was just the opposite of that little hope inside of me wishes for.
it was saturday morning, april 23rd, a week before eleanor and daniel's wedding. elle had gone home for last minute wedding preparations, and daniel and i had wound up having an impromptu bachelor party for ourselves. as was a usual weekend habit, i spent the night in their guest room (kate's old "love hut") and beau the labradoodle burst in with the energy of 6 straight espresso shots. i received a super wet love lick right on the face. i heard daniel rummaging around, so i tried to hold my head together (the shots the night before had been let loose in my brain apparently) as i jumped out of bed. but the jump didn't go so well- the pain was so intense that i crumpled to the floor. it was that quick. and from that day on, it just got worse. that's why it's a tucked away fantasy of mine that as quickly as that horrible experience set in, maybe it could just as quickly leave?
the decision to go on tysabri was a no-brainer for me, but it took my family and a few friends, a bit more convincing. just as quickly as news of the medication's success spread through the MS medical community, there was equally as bad news that jerked the drug from the market- 3 deaths. clearly, it's a pretty hard core medication- and by hard core, i mean there's a fatal side effect involved. the never-ending paperwork itself practically screamed the risk in every paragraph- RISK OF PML!!! i had to initialize every few sentences that i was aware of the RISK OF PML!!! a few times i felt like i was updating my will and signing away my power of attorney due to the RISK OF PML!!! (PML is a viral infection of the brain by taking advantage of a suppressed immune system- infections result in severe disability or death.)
i know what you're wondering. if there are (4) other drugs that can take care of my MS, why risk it with this one?
the real dirt on the trials
i believe that all MS drugs are a crapshoot. on average, they reduce attacks by approx. 1/3 in a lifetime- but here's the catch. no one can predict how many you're going to have! you could have 40, you could have 4, you could have 67. and those remaining 2/3 are still devastating, with the capacity to leave you with temporary or permanent side effects.
unfortunately, 3 of the 1869 participating tysabri patients did develop PML and die, resulting in roughly 1 in 1000 chance of contracting the fatal condition. but the trials were only done for 2 years- and they're still going through all of the tiniest details and micro analyzing the studies. the pharmaceutical company is SUPER vigilant- your doctor has to recommend the aggressive treatment, there is endless paperwork to complete, and the entire medical staff has to be trained and educated on the drug.
the ideal candidate
when i was first diagnosed in '04, i was young, scared and uneducated. i didn't understand that i could still choose my lifestyle over my treatments. the doc shoved a starter pack in my hands, i glanced at the brochure, i winced as the nurse showed me how to use the injection needle, and that was it. i'm not saying i made a bad choice, or that the doctor led me down a wrong path, not at all. but if i knew then, what i know now, things might have been a lot different for me. i know that you can't make up for lost time, but i can take a few things into my own hands- this is one of them.
and i have my youth & health working in my favor. you think i'm joking, right? no, i'm completely serious! despite my neurological condition, cognitive symptoms (i hesitate to say damage- it's hopefully not permanent), and physical challenges, i'm considered healthy. (trust me- with the exclusion of death itself, the side effects can't be worse than what i already endure.) i can't believe i'm saying this- but my single status has paid off! i don't have a husband, children, a house, a job, to be responsible for right now. to put it bluntly- i can be aggressive and selfish right now.
the bottom line
all in all, i know what this disease will end up doing to me. MS is chronic and progressive disease, and in my case, active. i know that i'm going to get worse as i get older, that the damages my own body has done to my nervous system are going to add up. MS has done and could do drastic things to me, and i want to beat it to the punch.
by the way, all this medical jargon can be confusing, and that keeping up with all of my sob stories and physical woes is hard to explain, so i've developed a cheat sheet. check it out when you have a few.
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