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.