Hey reader land, I had a chat with Mel about this and figured I’d update everyone on
what the procedure that I’m going to Wistah is all about, what it entails, why I’m doing it, and a little bit of brutal honesty to boot. (To boot is one of the funniest phrases I think!)
We have long heard of the miracle of “stem cells”, right? I mean, they are supposed to cure everything, Parkinsons, Alzheimers, etc. The controversy of stem cells of course is the immoral practice of embryonic stem cells, so we Catholics always blanch a bit when stem cells are brought up. Good news, reader land, adults have them too. In fact, I’m going to be donating my own stem cells for growth and injection. Moral win!
The study could last about 2-3 years, depending on the number of participants to complete, but my own involvement will be only about a year. Over that year there are 14-15 visits to UMass. The test is 50% chance of placebo, and it’s double blind, meaning that neither the Doc or I will know if I get the drug. The drug efficacy lasts about 8 weeks, so there are 3 separate injections, 8 weeks apart.
Visit one is informed consent to the trial, then the Neuro/Physical exam and blood tests
(4 times…). When I hear back from the blood test, then we go back for more eligibility visits. Visit 4 will be confirmation of eligibility. Then if that’s a GO, then the actual hard work begins. Visit 5 is scheduled for early morning, and they harvest bone marrow from my hip. It is outpatient so I’ll have a sore hip, but I’ll have ibuprofen and alcohol to help me out. No worse than slamming into the ground in soccer or anything. I THINK they’ll sedate me for the harvest
Visits 6, 9, and 11: Transplantation visits, where the stem cells are transplanted back into the patient via a lumbar puncture (spinal tap).
These visits require over-night hospital stays of at least 24 hours. So we will be enjoying more of the hospitality of Wustah and Boston on those days. Any suggestions?
Visits 7, 8, 10: Follow-up visits, requires lumbar punctures, but the participant goes home the same day. So no big deal. 11 and 14 are follows ups and testing end. At any point, if my safety is at risk in the trial, they will pull me from it. I don’t know what that MEANS but it’s reassuring.
Ok, so what does this drug DO?
Here are explanations of the phase 2 results. NurOwn creates neuro-protective elements to sooth the irritated neurons. Basically, these results mean that patients’ symptoms were halted or they achieved a positive improvement on their ALSFRS-R score. This effect was even more pronounced in the subgroup-analysis that excluded patients with slow disease progression. (This might be a bad thing for me, as I have slower progression.). So, if you get the drug, the progression might HALT! WHOA! Only a huge deal!
But (and there is always a butt) – 50% placebo. No guarantee that the drug would be provided after the trial. The FDA takes too long to approve new drugs for terminal patients. I can’t be on Radicava. And the small but unavoidable facts that this isn’t a cure and ALS is terminal
Ok, so why do it?
Because (to be brutally honest), I’m going to die anyway. There is no cure, but there are new drugs being developed thanks to people like you, doing the pepper challenge, doing the walk for ALS, Augies Quest, ALS TDI, Gleason Foundation, etc. And there have to be ALS patients to test these drugs to if they work. And this drug has the most upside of any trial out there.
So, why not do it?
I might not get the direct benefit of this drug, and that’s ok – I’m helping the next Joe down the road in his fight against ALS. Instead of selfishly waiting for the end of my own life, I should be trying to help others. God wants us to help others. By offering up myself as a test subject of some mad science scheme, I might be a direct contributor to curing ALS. And, I dunno about you, an uncredited, unsung role in curing a disease that hits so many is ok in my book. At this point, I can’t do something huge and physical to raise awareness, but I can do this! So I’m going to.
I hope this is a good explanation for you all. “If you have any thoughts, comment down below! Don’t forget to subscribe!”
*This post has a higher number of drawn butts in it than your average blog post.