First order of business—I want to give my heart felt thank you to Taylor Swift for putting out a new (and I think her very best) album! I was having trouble w continued blog title content. Thank you, T Swift! 😘
Second—I began a medication taper to come off Venetoclax mid-December 2022. It took about 6 weeks total. This was my easiest experience yet weaning off a leukemia drug, thankfully. A few minor bothersome things, but no major issues. Dr. Burger wanted me to come off the meds no matter what at the 2 year mark, since in the trials, this is when patients tend to begin showing resistance. We want to keep this medication in our arsenal for the future.
He wanted me completely free of CLL meds for 2 weeks, then have a bone marrow biopsy (BMB) completed and a PET scan. The BMB is to show if there are any lingering cancer cells in my bone marrow. And the PET scan is to show if any active lymph nodes w CLL cells are present.
If you’ve been w me along this almost 7 year journey, you know my first experience w a BMB was awful. It was not completed at MD Anderson. So naturally, I had a lot of fear and anxiety leading up to this procedure. I cannot explain the night and day difference between my experience at West Clinic in Memphis vs. my experience at MD Anderson. It was SO MUCH BETTER and well done. Still, it’s not a pleasant procedure, and I’m fine not doing that again for a while, or ever again.
For the PET scan you are given an IV injection and told to not be on your phone—to relax for one hour to let the solution injected go and “find” any active cancer cells. Then after one hour, the actual scan is exactly like a CT scan. That was my first experience w nuclear medicine!
I completed all of the above in Houston January 17, with my dear friend, Beth (pictured), who was an incredible Uber driver (😂), hostess, nurse and friend. I am so grateful she was w me. Jack was at home holding the fort down w Jackson—being his blood sugar ninja—and managing all things household, dog and school related everything. Beth and I got to have a great time, between appts, w some incredible meals and even got in a little shopping. I am grateful for friends who are family—who show up, take time away from their own jobs, families and life, for the not-so-fun stuff I needed help with! Forever thankful for my tribe.
Dr. Burger called me on January 31 to let me know the results of all testing. When I answered he asked, “have you seen your test results?” and I said, “I have; they look good to me (?). But I have been waiting to hear it from you. I didn’t want to get too excited.” He said, “it’s not only good news, it’s really good news. No detectable cancer cells in your marrow or scans. You have reached uMRD (undetectable minimal residual disease status)!”
OMGGGGGGG!
He reiterated that it’s a good thing we came off the meds now, because I would eventually become resistant. So we still have it if/when I do need it again. This means I *should* get several years off meds. I’m having a hard time wrapping my mind around that. I haven’t been treatment free , minus one short 15 month hiatus, in almost 7 years.
Lastly: the plan—I do blood work in Memphis in 6 months; I will see him in 1 year (I’ve never gone that long not visiting Houston!) And of course he said, “if you begin to see nodes coming back or not feeling well, you know how to reach us.”
I’m really happy for this WIN and for my second favorite word after “cure”, REMISSION 🙌🏼
My CLL is not cured. There is no cure, yet. But for now I’m CLL med FREE w ZERO active cancer in my body. So as T Swift says, “you’re on your own, kid.” And I’d *really* like to stay on my own (read: no treatment!) for a while 🫶🏼
