Today's the day. Week 144's injection on the clinical drug trial I'm on. This concludes the weekly intermuscular injection portion of this adventure. From here on out, I'm just injecting myself once a month in the stomach, subcutaneously. And I'll know what it is I'm on. No more placebo! (I was never on *just* placebo, I just didn't know which of the drugs was active, which placebo).
Even those who didn't start early enough to finish the full 144 weeks will transfer the the extension by February. In other words, this is the last lap for this drug as far as generating data before the real work to get it onto the market begins (FDA approval, marketing, etc.). Still years off, likely, but very exciting to feel a part of helping an entire new modality be available.
Those 144 weeks have taken me from newly (and quickly/unexpectedly) diagnosed and my first attempts to grapple with a new reality, to today where MS is really just a background process. Sure, it has jack-in-the-box possibilities, but I deal so much better with that uncertainty now.
It has taken me from a newlywed to a happy, stable, can't-call-this-new-anymore wife. And I love it.
It has taken me from working a minimum wage job in the glamourous world of fish and chips to training full-time in an area that will make me a highly skilled part of the modern workforce.
It has taken me from the first few months alone in my bed spending hours a day looking into this disease to someone who is really only in her apartment to eat dinner and sleep and read great books on weekends.
So, today is that final study diary entry. That final 30mm needle. That final loading of the injector.
The last (almost) three years has been quite a ride. This, I won't lie, feels like it has the importance of a graduation. I finished it. That sometimes painful period of growth is over. I remember when it seemed so far off, but I finished it! I feel like throwing my cap in the air, saying schmalzy things to the people I love, looking back and thinking "Oh, the places I'll go!"
We had a tongue-in-cheek celebratory dinner and a relaxed evening watching truly terrible films (a favourite of ours - the worse, the better!). It will be so nice to not even think about treatment as often. I've not managed to have quite as much time in between as Kyle, but a month without having to think about it suits me fine!
@Joiedecour RE: getting on the study
The hospital I was being tested at when I was still classified as CIS is a teaching hospital, so they do academic studies as well. The academic studies nurse asked if I would be interested in being on a vitamin D study (the short version: do Vitamin D levels correlate to CIS-to-MS conversion). It was just a blood sample, so I signed the informed consent and happily participated. In fact, I loved talking to them about it.
When I came back with the relapse that confirmed me as MS, the clinical trials nurse approached me if I would be interested. They run several drug trials for MS for different companies there. I decided on the one I'd be most comfortable with (I was not interested in something still in early trials without much safety information, or if the possibility of being only on placebo was there) and we began the official screening process.
This took four weeks because you can not have methylprednisolone (Solu-Medrol) in your system for a specific amount of time, you must be otherwise in good health (lots of blood drawn!), and in the case of the one I'm on you can't have been on any MS treatment previously. This is to help keep the data as clear as possible. If you were on something for years and switch, the waters are a little muddied as to which one ultimately effected your disease course. I do not believe this is always the case, but it was something I was able to offer that a lot of patients couldn't. I am the first participant on this specific study at my hospital (or 'site' in trial-speak).
It's involved monthly clinic appointments with quarterly EDSS testing: physical exam, distance and speed of walking, the always-fun PASAT test (sadly, I'm not kidding. I love that one!), vision testing with the frustrating Sloan Letter Chart, things that feel like children's games (the Nine Hole Peg Test and the Symbol Digit Modalities Test). There are regular pregnancy tests (Taken very seriously. You must be practicing birth control for the duration. You sign up for that.) and liver function tests and about five MRIs at various points over the 144 weeks.
This may sound like a lot of hassle, but you'd be surprised how streamlined it all feels after you've done it for a bit. And I've gotten so much in exchange. When I decided to participate, three things were in my head:
1. I was taking a gamble - a gamble that what I might be trying might be more effective than CRABs drugs then on offer (this was pre-orals!). I wanted to be aggressive, while still safe, in my treatment from the start.
2. My diagnosis was sudden, surprising, and very disorienting. To have the opportunity of touching base with a specialised nurse and an MS specialist on such a regular basis in these first years of a lifetime remaining with this disease was not something to pass up. My questions and concerns have to wait for four weeks max, not a year, not six months. In fact, the nurse will usually answer my emails in a couple of hours. This really helped with that initial shock and also helped put me in contact with other services.
When I was depressed about three months in, I was given regular appointments with the psychiatric clinic at the hospital, which led to a CBT-based 6-week group course at the day clinic which lead to the full-time training I'm receiving now in computer programming and game design at a special college that is set up specifically for people with extra challenges, be they mental, physical or both. And having been to mainstream university, I can vouch for the coursework being every bit as difficult, it's just that a lot more resources are available to students to help them succeed.
3. This one means the most to me. When I was first diagnosed, I had the luxury of being weighed down with countless slick pamphlets, DVDs, promotional kits for several first-line drugs. I had the luxury of being overwhelmed by choice rather than being overwhelmed by the notion that nothing could be done for RRMS. And it was so recently not the case. So very recently you were told what you had and that was that, bar perhaps the occasional steroid. I do it because that luxury only exists because thousands of people did what I was contemplating doing, and did it with far more potential risk, far more unknowns. But they did it. And we all benefit.
I know we all dream of a cure, but living in an era of progress, both in treatments and the overall body of knowledge, buoys me daily. And I'm so thankful to those unknown thousands. I want that 30 year-old newlywed in 2030 to be overwhelmed with even more options, whether or not she ever spares a thought for the little I've done.
First off, a big thank you for participating in the drug trial! My husband was diagnosed with RRMS 3 yrs ago. His aunt was diagnosed 25+ yrs ago, and I can wholeheartedly say the treatment options have come a long way! We thank people every day willing to do what they can to try and progress the possibilities for positive outcomes. I say "we" as I have Lupus and IC. I know you say what you've done is a "little thing"...but from small things do big things grow.
Thank you so much! It means a lot that you've taken the time to respond. And thank you for making it through that incredibly long screed of mine! (Shocking how long it looks once published to the site. I swear it didn't feel that huge when I wrote it!)
D'oh! Kyle, like ships that pass in the night, I didn't catch your update in time to include it just now. Thanks for the song! I consider you another among the vanguard in your choice of treatment. Perhaps not an official trial (do correct if I'm wrong), but very important for us all, nonetheless. So this just descends into a mutual admiration society.
The trials are such a commitment and I know we all appreciate those of you who do this selflessly. Thanks so much.
When I was dx'd, the doctor asked me about trials and of course I said yes, what I can do to help. But then I was immediately told I was too old to participate in any of the dmd trials- I was 54 at the age of my diagnosis.Most trials want people in the ideal age range of 20-50.
I've done a number of MRI studies (gray matter imaging) and am currently in an extended-release baclofen study. It feels good to do something to help but it's not been with the big gun drugs.
My aunt lived with MS for about 60 years - she was never given the opportunity for these drugs because they weren't available. Like you, I am grateful to all the people who are willing to try something different, even though there are risks, so that all of us will benefit.
My husband has been in a COPD trial for over two years now - the paperwork said it was a lifetime enrollment, he's in it until he drops out or he dies. We hope this is a long commitment. He appreciates the easy access to the nurse and the regular monitoring of his condition. I'm seeing the MS nurse every 30 days for the baclofen trial, too. TMedical access is a huge benefit for trial participants.
So why have I gone on and on about this, too? I encourage each of you to consider the options if you are asked about a trial - it's not for everyone ,but for most it is one way to find a positive in this mess of living with M S.
Immesceo, congratulations on a job well done. Graduations are always wonderful - reaching goals isn't always easy.
Thank you, Laura! And thank you for all the many, MANY things you do, here, in tests and trials, as an amazing real-world advocate for all of us. And thank you to your husband too! COPD effected a much beloved grandmother of mine, and I certainly hope to see amazing strides in that area of health too.
Agreed; if a patient is curious, it can pay to inquire about trials. I don't fundraise, directly, but all charities and causes can use old-fashioned time and effort too. And trials tend to be of mutual benefit.
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