A Perfect Score
I have a perfect score! How cool is that? Did I get a 100% on a math test? No, it’s unlikely that’s ever happened in my life. Did I bowl 12 strikes in a row for a 300? Not a chance. I’m lucky if I break 100.
Last month Cameron, my chemo nurse, handed me my monthly lab paperwork. She said congrats! All of your labs are perfect! I was in shock. I looked closer thinking there must be some mistake. But she was right, not one single bold number followed by an H or L. Not one abnormal result on my complete blood count (CBC) or metabolic panel. I felt like dancing around the chemo clinic, thrilled beyond words. I joked with Cameron that I needed to frame these results.
So why was I so excited? Before you think that I'm certifiably nuts, let me explain. It's probably been close to four years since I've seen results like this. Back to a time before I was diagnosed with polycythemia vera (PV), a rare blood cancer and breast cancer, both in 2016.
Abnormal blood levels led to my polycythemia vera diagnosis
Most blood cancer patients, including those with PV, monitor their blood levels closely watching for any trends. Good results can mean the cancer is in remission, bad results can possibly signal a re-occurrence or disease progression.
Abnormal lab results were what led to my diagnosis of PV. My primary care provider noticed my blood counts were elevated; particularly my platelets, red (RBC) and white blood counts (WBC). My platelet level at that time was upwards of a million (normal range is 150,000 – 450,000 per microliter of blood) so he referred me to a hematologist.
Multiple tests, including a positive Janus kinase (JAK2) test result, confirmed that I had a chronic blood cancer called polycythemia vera. I learned that a JAK2 gene malfunction causes my bone marrow to overproduce red blood cells, which causes elevated hematocrit, platelets, WBC, and RBC. This can make the blood thick, cause a multitude of symptoms, and increase the risk of stroke, blood clots, and heart attacks. PV can also progress into cancers that are more serious like myelofibrosis or chronic myeloid leukemia.
During my first visit with the hematologist, she recommended I follow up in a couple of months to reevaluate. Unfortunately, before I had a chance to see her again, I was diagnosed with breast cancer. I started chemo shortly after. Interestingly enough, the breast cancer chemo brought my platelets and other blood counts down to normal. However, the chemo caused the elevation in other lab levels like creatinine and bilirubin.
Continuing to monitor my blood levels
After completing the chemo, within a matter of months, most of the blood levels popped back to a dangerous range. I used to dread my monthly labs because improving them was something I couldn't control.
It wasn’t until I started a JAK2 inhibitor a year later that my platelets and other blood levels started a downward path towards normal. However, my results still weren’t perfect, While some levels would go down, others like my liver enzymes would increase. It was like I was on this perpetual seesaw that never balanced out.
Ideally, I would like to be in a hematological remission state without medication. However, I'm not sure if that will ever happen. I don’t know if this perfect score was a fluke or a trend. I guess I’ll have to wait until next month to see. For now, though, I think I’ll stop by Hobby Lobby and pick me up a frame.
Have you used CAR T therapy as a treatment for blood cancer?