Alright! I went to Houston for a follow up August 9. I was supposed to go in May, but I had covid—again, and I had to re-schedule. Dr. Burger spends all summer in Germany. So August was the first available appointment.
He is testing the level of disease in my blood (MRD status - minimal residual disease). I won’t have results for a few days. All other labs look great. If it’s 0.00 in the blood, he wants me to have a PET scan (to see if there are any active nodes from head to toe) and repeat bone marrow biopsy 😫 (bc it takes longer for leukemia cells to get out of the marrow vs out of the blood). Both tests would be done in Houston. He won’t take me off the meds without those baselines to see how much is in my body/how affective the meds are. So if blood work is > zero, continue meds to the 2 year mark (January) and likely take me off either way then bc resistance can build after two years (per trials so far). He would still do tests then anyway to have the data on how it worked for me. He expects 2-3 years of no meds after this, but mine tends to be aggressive so no way to know…
So if my bloodwork is 0.00 and the marrow is still reading positive for leukemia cells, then I would stay on meds for another 6 months.
I have decided, regardless of this week’s bloodwork, to continue on the meds until January. Let’s complete a full 2 years. I do NOT want any more bone marrow biopsies than I have to have. In fact, I want not one ever again—if I’m being honest. Imagine a drill—a screw gun—going into your hip bone. I’m a strong girl. But this one is too much. TOO MUCH.
Thank you for staying the course on my slow and steady, yet a little scary, marathon of CLL.
Getting off all meds would complete my wildest dreams. Even for a moment. I have not been off of CLL meds in over 6 years.
🤍🤍🤍
