March 2019 update
Lots to update here:
Minimal Residual Disease (MRD) result came back at 43ppm. That’s an increase over the 24ppm that I had for my two prior measurements over the past year.
Doc says he’s not concerned, and regularly sees fluctuation in both directions in patients both on and off of treatment. (so it’s possible that I could go back down)
It’s important to weigh this in context. 43 parts per million isn’t a lot. Of course being a math nerd I calculated how long it would take me to relapse at the current growth rate, and I came up with 5–8 years. (which is above average) This napkin math is pretty usless though given all of the variables that I didn’t (and don’t know how to) consider.
Doc says that he has several patients in my situation, and nobody has relapsed yet. That’s a positive way to think about it. The negative way, of course, is that it’s impossible that I’m cured (which was already an extremely low probability)
Plan is (and always has been) to continue on just Revlimid maintenance 21 days on, 7 days off until progression. Progression (forgive me if I’m not exact here) is a measurable M-Spike of 0.5 g/dL and some other stuff that I don’t remember. I haven’t had a measurable M-Spike since before June 2017.
I have inquired about a clinical trial that tests a vaccine + Rev maintenance vs Rev maintenance. It’s a double-blind trial, so I wouldn’t know if I got the vaccine. Since my plan is Rev maintenance anyway, it can’t hurt (and I believe participating in trials is something we all should do as patients).
I see the doctor again in June, and will likely do another bone marrow biopsy in August.
Some other news:
I’m feeling really great. I can tell my immune system is rebuilding and my slightly blurry vision has improved being off of the Dexamethasone.
Doc said I can get my port removed! I’ll go in for a quick 30 minute procedure to do that on March 26. I lovingly refer to the port as my “third nipple,” because it protrudes from my chest just a bit. This will enable me to do two things: 1) accept a pool party invitation should I ever get one, and 2) allow me to get back into weightlifting. (I can’t do the “Clean” or front squat movements because the bar would risk hitting the part where the tube goes into my jugular vein). Of course, this means that I’ll do my labs the old fashioned way trough the vein now, but that’s a small price to pay. Should I ever need IV treatment again, I’ll likely have to get a port re-installed.
I just got back from China and Macau. Cool places that I have never been to. Jetlagged AF, but I’m pretty happy that my immune system held up. I was around a lot of sick kids and at one point had a mucus-y cough spray me (from an adult). Thank you purell. Off to Montreal in April, and likely KC and London in May. Possibly Japan in October. It’s so nice to be able to travel again.
Last note, our family is complete. We got a third Bulldog in February. His name is Pickle. You can stalk them all here.
