As of yesterday morning, another round of chemo meds is in the books. Thankfully, the treatments after the first night were a lot less eventful.
The last post was on Tuesday, the morning after his first chemo treatment. He had a bad allergic reaction to the drug Etoposide and was somewhere between very difficult and unable to exhale until the drug was stopped. Staff had not seen that particular reaction before, but all sorts of allergic reactions can happen with any drug. The procedure for that drug was tweaked to add pre-medication of Benadryl and Methylprednisolone and he didn’t experience an adverse reaction in further treatments. The Methylprednisolone does strongly impact some counts. It pushed Glucose up as high as 175 (typical range 65 to 99) and, now off that, it’s already down to 102.
We only got blood labs on Friday and the ANC was all the way up to 3,528. If you’ve been following along, that’s more than double the highest ANC he’s had (1,488) and way above the level of what would typically be considered immunocompromised (anything below 1,500). But this is not the robust immune system that number may suggest.
First of all, his white blood cells were composed of 98% Neutrophils and 2% Lymphocytes. A more typical “good” composition would be something like 60% Neutrophils, 30% Lymphocytes, and 10% various other types, as Neutrophils are not the only important component of a healthy immune system. This count of Neutrophils is deceiving because the Methylprednisolone makes more of them circulate in the bloodstream (as opposed to being stuck to the wall of blood vessels), signals bone marrow to release them into the bloodstream earlier than usual, and extends their life just a bit. Most critically, it impairs the Neutrophils’ ability to move to the tissues to do their job of fighting infections. So, while there’s a whole bunch of them in a blood draw, they’re actually less able to do what they’re made for. In short, Methylprednisolone is an immunosuppressant. It just happens to push what is typically a primary indicator of a healthy immune system (ANC) through the roof. We’ll get daily blood counts starting tomorrow morning and I expect this ANC to tank posthaste (a few friends gave me a hard time for using posthaste in a past post so using it again 😺).
Friday’s labs also had hemoglobin down from 11.5 to 9.8 and platelets down from 424 to 282. It wouldn’t surprise me to see necessary red blood cell and platelet transfusions shortly. From what we’ve heard, this and the next phase often have the longest count recovery periods and we expect a minimum of 4 to 6 weeks with more transfusions than in Phase 2. Of course it would be great if it were quicker, but we’re mostly just focused on avoiding infections, fever, and deepening remission.
Speaking of remission, I noted in the last post that we were waiting on the latest MRD (Measurable Residual Disease) test results. Maybe I should have led with this, but they were good; he’s still in remission. “Remission” in this case is for less than 5 cells out of 10,000 detected as abnormal (suspicious of being leukemia cells). When he first went into remission, the test detected 1 in 10,000 as abnormal.
This time around, the test did not detect any abnormal cells. This does not mean there aren’t any because the test isn’t perfect. Regardless, “bad” would be detected cells above 5 in 10k while “okay” would be similar to last time at 1 in 10k. None detected is “good”. We’re not going to get too high about it just because it doesn’t guarantee zero nor would zero guarantee remission, but we are very thankful for the result.
From here we settle in and watch the counts hit zero and wait. So far this phase, his energy and appetite have been mostly okay even during chemo. We can’t really compare it to Phase 1 since he was dealing with so many leukemia cells throughout the first 10-15 days. Phase 2 went well save day 2 where he was mostly down for the count. He hasn’t had a down for the count day yet this time. He is starting to get a bit of nausea from time to time, but that happened last round too coming off chemo.
That’s about it for now. Since that first scare with the Etoposide, Noah stayed awake each time that was going in the IV. Since that didn’t finish until after 11pm each night, his sleep hours are a little messed up. We’re trying to gradually bring that back earlier, but I’m sleeping in the room tonight and still hear him moving around so going to sign off. We love you all and over and out.