I can’t believe it’s been nearly a month since I last updated the blog. It’s not that I haven’t been writing or otherwise active, it’s just that I’ve been so focused on the book, I hate to take any time away from it. I’ll get into more details shortly, but I want to share this:
Today, I’m writing this from chair 10 at the infusion center. As the title says, after today, I’ll have only two infusions left. This is number 37! As to what happens next, I don’t know yet. The reason for that is this: The initial course of treatment for Leqembi is supposed to be 39 infusions. One every two weeks for a year and a half. After that (and forgive me, this has all been said, but bears repeating) Leqembi suggests a maintenance dose - once per month. All well and good. Except for this: I’ve been hearing stories of people having complete remission of Amyloid after the first course. If that’s the case, then why would you stay on a medicine dedicated to removing those plaques? My good neurologist told me that the competing drug, which operates in much the same way, did a trial that showed that there was no real benefit to the maintenance dose. So I’ve been thinking about all the research being done that supports other factors being part of the cause of the disease like inflammation, Tau proteins and more. And because it can take a decade or more for plaques to build up, it has seemed to me to be logical to try new therapies and clinical experimentation. (I’m doing one now for inflammation, which can be done concurrently with Leqembi.) All good, right? But only if there is no plaque left after the first round of treatment. So. Every single person I’ve spoken to who has completed their Leqembi treatment phase one has had a PET scan to see what the status of the plaques in their brain is. Right? It’s only logical. Why would a patient, doctor, drug company or insurance company not want to know this crucial information?
OK, so the reason for the rehash of this previously vented spleen is this: As we know from a much earlier post, Wendy was involved in a rear-ending hit and run accident (over a year ago). Despite being told by her insurance company that she was fine, she’s not. And in the past 6 months or so, she’s started to get cervicogenic headaches, which are debilitating migraines caused by the neck trauma (and remember she had spinal surgery just below the neck about two months before the accident). As a last ditch effort, she made an appointment with a neurologist (the same neuro who diagnosed her spinal tumor and my Alzheimer’s). I’ve had lots bad to say about him in this blog, but never once have I maligned his diagnostic curiosity or prowess. He is exactly the right guy to see in this case. <cue eerie foreshadowing music> But he is not the guy when you want to try novel treatments! Or if you want to see what’s happened in your brain in the last year and a half apparently.
While Wendy was in with the doctor, I had a moment to chat with his office manager - and asked him two questions: The first was if they thought I’d be a candidate for the Leqembi home based subcutaneous shot that has recently been approved by the FDA. The answer was probably not, because of insurance hoops (despite it being more cost effective. It’s odd, isn’t it, that an insurance company would put roadblocks in place for a less expensive treatment). The second question was whether they had put in for my PET scan yet. I have an appointment with the doctor scheduled after Infusion 39, so I had been, naturally, assuming that sometime between the last infusion and the appointment I’d have a PET scan, and my schedule is filling up, so I wanted to get it in the books. I was told that they do not do PET scans after completion of treatment. That’s all. (Now, I’m going to put my fair hat on, and say that I did not have this conversation with the doctor, only the guy who’s responsible for all the scheduling and insurance communication, so there’s a (slim) chance he was misinformed. And because of that (slim) chance, I wrote a message to the doctor via the portal 5 days ago. I’ve heard nothing yet.) Now, because I’m Alz Fired Up! I have other resources. I’ll be getting a PET scan as part of the clinical trial I’m doing, and they’ve said that they might be able to share that data with my good neurologist (I won’t even bother with the other guy, because he’s not interested), who will then help me make informed decisions about my freaking life. If that doesn’t work, the good guy said he’d put in for a PET, but that would force me, if I still had plaques, to continue my treatment elsewhere because he can’t write a script for me locally. (He did seem to think that he’d be able to get me the sub-q shot though) So, I’m confident that I’ll get the data that I need - but I’m going to have to work for it, which is so completely not appropriate that I’ve been living in a mildly outraged state since finding out. I also might have to make important decisions before I have all the data I need.
Now, one of the things I’ve been doing recently is speaking as a person who is living with Alzheimer’s at conferences and community events. I’ve got two coming up, one of which is the previously mentioned (and rescheduled due to a massive snowstorm) talk in Pennsylvania in partnership with the Alzheimer’s Association. Here’s the article about that. Thanks again to Masonic Villages of Elizabethtown for working with us. Also coming up is a web symposium that you can all sign up for if you like.
The National Alzheimer’s Buddies is an organization that pairs college students up with dementia patients for weekly visits. This helps them with the feelings of isolation and loneliness and increases activity and socialization. Good stuff. They’re having their annual symposium and have asked me to be on a panel to talk about the stigma of the disease. Here is the link to sign up. It could be fun.
It’s also looking like I’ll be heading out to Indiana soon to speak to a group of students about the needs of people presenting with Dementia. (One of those needs is the for accurate and timely information.) The Kinney College folks are great, and this, which is a student led initiative, is a great opportunity for me, and for them as well. This educational model seems like something I’d really like to pursue more.
I met, online, a guy named Sam who, much like me, has decided to get out in front of his disease. He does it by performing a play which he wrote. He’s also written a book. We had a great conversation. He can be found at his website here.
Finally, later today, I start my journey with Dementia Minds, who (among other things) put together small groups to share the lived experience. I’m curious to see how this works out.
As for the book, I’ve broken the 50,000 word barrier. I am getting to the point where I need to really look at the placement of what I’ve written. There could be a lot of editing ahead, but it’s going to turn out really well in the end! I’m really excited for you all to see it. I’m thinking of doing some readings - maybe even starting at Kinney College. I’ve got a chapter devoted to the health care industry that might be appropriate.
And that’s all for now. Thanks for reading,
Sean
Is there a way I can reach out to you privately? My husband is currently starting a trial and I had some questions
Your are a marvel