Does W&W really need labs?

[Katiedee1625]

I've been on W&W for five years. I started off with just yearly visits, but now am going for labs every six months (doctor visit yearly) since some numbers have been trending in the wrong direction for two years. However, my doctor says it's really not about the numbers, but more about symptoms. Since I am doing very well with no symptoms of drenching night sweats or nose bleeds, I'm wondering why bother going for lab work at all if I'm feeling well? It may be only twice a year, but it's still taking the time to go, wait, and then "see ya in a year." What would be the harm in just not going unless I'm having symptoms? I've known people with really abnormal labs who are still not getting treatment. I already cancelled my 6 month lab. If I'm still doing great by November (which I know I will), I may cancel the visit too.

[goldstream]

Hi, I was on W&W for 12 years and routinely did my labs and visits. Yes, it was a pain but it did allow me to understand my body better. The disease was progressing very slowly. My oncologist was signalling treatment in 2020 even though my levels weren’t bad - at the time I couldn’t understand why. In Feb this year I still was feeling great; went skiing for 5 days; no problem. In the space of the next 2 months my levels changed dramatically, I caught pneumonia (non/COVID) and was very sick, went though the prep (CT scan, bone marrow biopsy, PET Scan) and started Ibrutinib. The key learning is you don’t want to wait until you are sick. Start treatment prior to that, which means routinely monitoring your levels. That is my advice based on my experience. Hope that helps.

[nuji in reply to goldstream]

Hi Goldstream, what were your blood counts like before started treatment? Thanx

[goldstream in reply to nuji]

Lymphocytes = 100 (or 100K for some), but 60, 3 months prior; Hemoglobin = 96; platelets =95; Gamma Globulin dropped to 4.4 (immune-suppressed). In short, the pace of the disease changed quickly after 12 years of W&W. Remember, it is not exactly the same for each person. For most, it happens sooner and for a few later.