Bloodwork, (sun) burning and babies #NoTanForDan

Since my last post, I’ve started noticing more side effects from the Alectinib. I’ve been getting lab work done on my blood more frequently. My creatinine levels were elevated (~1.6 vs normal levels of 1.2), which can be indicative of impaired renal function. I tried drinking more water, but that didn’t seem to work well enough. As a result, my Alectinib dose was temporarily reduced to half of the initial dosage when I started on this treatment. This slightly concerned me as I wondered how this would impact the efficacy of the treatment on such a low dose, but I was hopeful my kidney levels would normalize.

I also started to notice compounding side effects since I began the treatment. Fatigue has started setting in earlier and earlier in the day and my sensitivity to sun has increased significantly. Like I said in one of my other posts, if these are the worst side effects I will take it. I’ll just need to get a extra afternoon dose of caffeine and be religious about applying sunscreen.

I went back to Charlottesville today for my quarterly visit with Dr. Hall this past week and it seems the minor adjustments are working. My creatinine levels seemed to be back down to normal and we’re increasing my Alectinib dosage!

In addition to checking my scans and labwork, Dr. Hall takes care to answer my (and Varisara’s) many questions. He almost always has answers for any question we throw his way, but when he doesn’t know he will always try to find out for next time I visit. At a prior visit, we had a question he needed to research further: What is the guidance around having a child on Alectinib?

Avery is just over 19 months now and I can’t believe how quickly she is growing! The older she gets, the more frequently Varisara and I are asked “When are you having another?” I never know how to respond. Typically, procreation is not recommended for patients on standard cancer treatments (such as chemotherapy or radiation), but I was hopeful the answer would be different with Alectinib since the my treatment is targeted towards the genetic mutation. Dr. Hall followed up with his colleagues on the topic and found there is not enough data available related to the impacts of this treatment on a fetus. Ultimately, the decision is ours to make, but given the potential risk, we want to wait until there is more conclusive data. For now, Avery is the miracle baby were so fortunately blessed with before any of this chaos entered our lives and I cherish every moment I get to spend with her.

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