After my first week back on Tagrisso, I anxiously got blood tests to see how my liver was doing. The good news was that almost all of the liver enzymes were within normal limits or close, and the tumour markers continue to decline...Yay! Unfortunately, my neutrophils, hemoglobin and, especially, platelets were dropping to dangerous territory. The platelet drop was concerning enough that a repeat CBC was needed to make sure it wasn't going to lead to serious complications. Two days later, my oncologist called to tell us that my platelets had now dropped to 5!!! The normal range for platelets is 150-400! In fact, I had been dealing with a bloody nose for about 7h by then. I was taken off Tagrisso again :( and I was to go straight to the ER for a platelet transfusion since a risk for internal and/or cerebral hemorrhaging was high. How do I keep getting into these dangerous situations? In the ER, I got 2 doses (bags) of platelets and a rhino rocket (i.e. nose plug). A huge thank you to the 10 donors for your platelets. Yes, it takes 5 people to make one dose of platelets. Please consider donating blood if you can as there is a huge shortage. In fact, we waited an extra 3h for my second bag because it had to be sourced from another hospital. I was sent home but I was asked to return Sunday to remove the rhino rocket.
Sunday evening, we returned to the hospital to get the rocket removed. Unfortunately, my nose continued to bleed so another CBC was done. Now, my platelets were 4 (from 37 after the transfusion!) after only 2 days, but my hemoglobin and neutrophils had improved. The ER doc was perplexed as to what was going on. After consulting with on-call oncology, another 2 bags of platelets were transfused. Another CBC was done. This time, the platelet count only improved to 11 (it should have been closer to 40). Something is eating up my platelets!!! A hematologist was consulted and 2 more bags of platelets were transfused. That's 6 bags now total, or 30 people I owe my life to. Thank you so much for donating your blood!!!
And now we wait. My oncologist and a hematologist have been consulted. I will eventually be transferred and admitted to the hospital connected to my cancer centre for better care. In the meantime, more tests are being done to try to find out what is destroying my platelets so rapidly.
Word of advice to other EGFR+ lung cancer patients: DO NOT try nivolumab unless it's absolutely necessary. I truly believe it messed up my immune system and causing my body to attack itself. I have also read over and over that it's ineffective for EGFR+ people. Please be careful with immunotherapy.
I wish I had better news to share but it looks like more challenges have come my way. What doesn't kill you can only make you stronger, right? Let's hope it makes me stronger... And that the food and sleeping at the other hospital is better. I would also like to get off this ridiculous roller coaster ride...
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