The new plan is the old plan
This is a quick update to let y’all know how my doctor’s appointment went, yesterday.
My doctor confirmed everything we already knew from the preliminary lab results. I’m stable-ish and still making some small positive progress. Which doesn’t sound that bad, but it’s really not great.
As I’ve mentioned a bajillion times, the side-effects from Cometriq really suck. And now we know it’s not working that well. So maybe it’s time to try a different drug? At one point (months ago) I remember my doctor saying there were about 5 other options if the Cometriq didn’t work or stopped working. Yesterday, we discussed these other possible therapies with my doctor. But here’s the thing, these other drugs will very likely have even-more-super-worser-side-effects… The truth is, there are no great options.
My doctor basically confirmed my suspicion. Even though I feel awful on Cometriq, this is probably as good as it gets. Unless new therapies are developed, it only gets worse from here.
And because of the Covid lockdown, many labs are not even working on new options. With all that is going on, this is not a great time to start a new clinical trial. My hopes of future therapies are dwindling with each day of lockdown.
3 More Months
So the plan is to keep on Cometriq for another 3 months and see if I can handle it. And see if it keeps working. And then we will reassess again. I’m going to increase my dose back to 100mg because I might at least make better progress. I’ve also been given the OK to take a 4 or 5-day break from the med every six weeks or so. This will hopefully give me respite from accumulative side-effects.
Answers to your Questions
Thank you to everyone whose been asking questions! I plan to do another post in the next week or so to answer those questions. If anyone else has questions, please feel free to send them my way or leave a comment.
3 thoughts on “I was right”
Praying for you and your family Matt.
Glad to hear you’re not worsening, even though things are kind of at a stand still. I think about you quite a bit, and love reading/watching your periodic updates.
What’s been your best/most effective coping mechanism or self care?
I’ll miss having you perform this summer at the Barbara Bush library, although it would have be a virtual performance were you able to do so, thus I wouldn’t see you anyway…. Dang ‘Rona…
We’re gearing up for 100% virtual SRP, as I’m sure your other librarian friends have mentioned to you. I’ll be returning to the branch next week, but God knows when we’ll actually open back up for the public. Things change weekly here in Harris County; it’s a hell of a toboggan ride!
I just watched your last video; Anubis is so freakin’ CUTE! His name is perfect, as is his adorable little face! I’m glad you’ve got him; animals are the best therapists.
I hope you get through the next few months with minimal issues, and that your reasses yields positive progress!
Ok, I’ve rambled enough! Praying and sending positive vibes to you and yours!
Hi, Amanda! Thanks for the update on the library happenings. I hadn’t heard about the virtual performances. I’m glad you’ve found a way to keep the SRP going despite the crazy toboggan ride. ;P I guess I picked a good time to retire.
To answer your question – I’ve found a few helpful coping strategies. Humor is a big one. Making jokes and confronting life’s challenges with a little humor makes it all a bit more tolerable. Being in a crazy situation opens up the door for all kinds of jokes and funny moments that wouldn’t have happened otherwise. Might as well enjoy them. Also, video games have been helpful. 🙂 I play minecraft (which I never thought I would care about!). I like it because it is simple and slow-paced and allows me to explore and be creative without being limited by my health and energy level. Lastly, I’d say just taking things one day at a time. It’s an age-old tactic, but man it really helps. Today might suck, but tomorrow might not. I feel a lot of anxiety when I try to imagine feeling this way for days, months or even years. Bleh.. I don’t think I’ll ever feel “better” but I know I can handle today. And that’s all I need to think about.
Thanks for saying hello. I miss my library friends!
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