Hello group - So grateful for all the posts and stories that have helped along this journey so far. We’ve never posted but have learned much from the wealth of information!
My husband was diagnosed with CLL in 2011 after WBC count didn’t return to normal range following a brief intestinal infection. He has been on watch & wait for CLL since.
In the meantime, successfully treated for HepC in 2018 (also discovered in routine testing w/o ever having symptoms). Then in the summer of 2020 was diagnosed with Oropharyngeal Squamous Cell Cancer, treated with 33 doses of radiation and three rounds of cisplatin and continues to have No Evidence of Disease at six-month follow ups.
His WBC counts had dropped from the cisplatin, but started climbing back up since then, and in June were in the mid 20’s range. They never had been higher than 27K this whole time so no one was too alarmed, though the count had doubled in 9 months.
Then in mid-July an axillary lymph node suddenly swelled so much it was visible at the edge of his chest. A couple more swelled noticeably within a week. He had already been extremely fatigued for the past couple of months, and was experiencing bone pain in his legs and feet.
We immediately saw the medical oncologist who had treated him for the OPSCC (she treats CLL in another facility and was going to monitor it for him since his hematologist had just retired). She ran LDH which came back at 323, ordered a CT and referred to Hematologist. The CT indicated “concern for Richter’s” so a PET scan was completed. Several nodes with SUVmax >5 and a few >10 prompted biopsy. No Richter’s! But because of additional risk factors it’s time to start treatment. (Platelets & Hemoglobin both ok)
Factors: age 71, unmutated IGHV, NOTCH1 (33%), BRAF, FGFR, MDM2, ETV6, ZAP70+, Trisomy 12, Beta2-microglobulin 5.3, ALC 20, Rai stage II. (TP53 not an issue; negative for 17p deletion.)
He has some minor cardiac blockage; is treated for moderate high blood pressure; has Rx for hypothyroidism as result of radiation to neck; and has been on regular dose of OxyCodone for years because of severe spinal degenerative disc disease.
Treatment recommendations are either Acalabrutinib 2x day or Venetoclax+Obinutuzumab.
We are aware with Acalabrutinib we’d also be seeing cardiac oncologist for monitoring; know about the bleeding risks (we are pretty active outdoors and always run a slightly higher risk of cuts and bruises), and of course skin cancer - especially since we live in Colorado. And we know with V+O there would be much more medical center time upfront, including some overnight stays and possible very uncomfortable days from neutropenia, for example. We are on the fence, weighing pros and cons about both.
He can see the benefits of “powering through” for a definitive time period with a decent possibility of CR, rather than the indefinite return to W&W and continuing risk of progression or transformation. But on the other side, going with Acalabrutinib means we continue to have a pretty normal routine right away, even with a few more visits to the medical center throughout the year.
I guess at this point we would most like to hear if any of his combined factors ring any bells with this community as to why one treatment might outweigh the other. Thank you so much for reading all of this! 🙏🏼
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