I have the SLL variant, so my labs were never that off. Abs. Lymphocytes had been at 5.2 and neutrophils had started to drop (though had remained within normal ranges) before I started treatment. Doctor finally recommended Acalabrutinib because of my bulky lymph nodes.
I noticed the biggest change with the size of lymph nodes during the first two weeks after starting treatment. My entire neck decreased in size as the swelling went down. Abs, lymphocytes jumped to 7.9, which I guess was due to the medication doing what it was supposed to do.
I haven’t noticed much change with the size of my lymph nodes since. It’s been six weeks. Many nodes persist, though they are definitely a bit smaller now. I just had my labs done today (CBC/CMP) and was surprised to see that my results were now all all within normal ranges. Nothing was flagged, and everything looks perfectly normal. Abs. Lymphocytes at 3.
Does this mean that the medication isn’t really working? I was expecting the blood results to get much worse before getting better (been reading about this here)?! I am bit concerned as I can still feel my lymph nodes. Anyone with SLL that has had a similar experience?
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Tofa80
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I don't see any reason for you to suspect that acalabrutinib isn't working for you. In fact, it looks to be working fabulously for you. You note that your reason to start was your bulky lymph nodes, not bone marrow infiltration. I suspect it's my mention of falling blood counts before improvement you are referring too, but it's not an inevitable occurrence. Acalabrutinib works slowly. Patience!
IMO this sounds like you are getting fabulous results; I think things moving *slowly* in the right direction stresses our bodies much less than if things move abruptly. Less strain on kidneys eliminating dead cells, etc. You are probably losing mass in internal lymph nodes, it might be a while (if ever in rare cases) until the external ones decrease some more. Congrats on having smooth sailing so far! Remember that blood tests are a "snapshot" in time and it's entirely possible for your body to push cells out of nodes, have a temporary blood level rise, the cells get attacked/killed/eliminated, without this being captured by a blood test.
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