Vidaza + Venclexta: GO!

Today is day 1 of 7 Vidaza (round two) and the first of daily Venclexta. When I was under the care of St. Luke's doctors, this regimen would have started mid-January. But Froedtert waits for counts to recover before hitting you again, so today is my start.

And counts DID recover:
White blood cells: 2.8 (highest since 12/5, which was day 7 of the 7+3 chemo)
Absolute neutrophils: 1.61 (highest since 12/5)
Hemoglobin: 8.8 (woot!)
Platelets: 59K (down, but still well above the transfusion threshold of 10K)

15 minutes for pre-meds, 10 minute Vidaza infusion and
TWO HOURS of fluids to protect my kidneys from the Venclexta

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It's been over two months since this wild ride started. Nine weeks, actually. I missed my favorite parts of winter (Black Friday shopping, extended family Christmas, fat tire biking on the trails in the snow), but I have also been so fortunate to not be hospitalized for some big holidays (Thanksgiving, Christmas, New Year's and my 50th Birthday). I am especially feeling fortunate to have had the last "extra" 10 days to allow my counts to build up before being hit again. And January is almost over without any polar vortexes (vortices?). Here's hoping February is as kind.

I didn't get to fill everyone in on the voriconazole/hallucination report. Luckily, I didn't get any bad/scary hallucinations, but I didn't get any fun ones either. I do have light flashes in my peripheral vision for about two hours after I take the med (take it twice a day), but I think either those are fading or I'm getting used to them. Either way, I have felt completely safe driving, as any impact on my vision has been minimal. Again, I'm thankful for the little things.

Another thing I'm feeling grateful for is the extra energy to actually be productive while I'm stuck home. I have, for years, said that I just wanted like a week to be off of work but staying home to work on organizing the attics, my closets, the basement, and to toss all the crap that accumulates the longer you live in one place. This is not how I'd recommend getting that week to organize, but I've been trying to take advantage of it. And Greg will be making many trips to Goodwill!

I was pleasantly surprised that my appetite has come back. Starting in early November (before I was diagnosed, but when I was already showing symptoms), I had to really work to make myself eat anything. It was very strange, as I'm a person who plans almost everything around meals (whether cooking them or going out). From my highest to lowest point, I lost 28 pounds. But the hardest part was knowing that I had to keep eating to be strong to fight this. Instead, I was gagging down whatever high protein, high calorie foods I could. And nothing tasted good, which made me sad. I have since re-gained four pounds, probably due to the fact that I have to be super careful with eating fresh fruits and vegetables. I can't eat a lot of raw foods (too great of a risk for food poisoning) and so I'm defaulting to very carb-heavy meals. What I wouldn't give for a giant salad...

And I have so loved catching up with friends--whether they are giving time to drive me to appointments, walking with me, visiting, sending cards, texting or calling or messaging, I've loved all the re-connections.

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I was able to see the cytogenetics from my latest bone marrow biopsy and compare them to my first ones. I have never seen an abnormal karyotype before, so I'm not sure of the accuracy of my interpretation (if any of you have experience with this, I'd love to hear your thoughts, but I won't post my karyotypes on this blog. :)).  As Dr. Atallah had said, from the sample of 17 cells, 13 of them were normal (ie: 46,XX). However, 4 were still "messed up," although some of the original mutations were not present in those four cells. For example, in November, all 20 cells had "unidentifiable chromosomes present" while in January only four cells had unidentifiable chromosomes. In November, chromosome 17 (which houses the very-important p53) was missing. But in January it was not missing. I don't know if that was just luck of the four cells examined, or if it really does mean that the p53 mutation was successfully targeted by the round of Vidaza. Chromosome 18 is still messed up/missing parts, and that's where BCL2 is located, so adding Venclexta (which targets BCL2) is good. (At least that's how I'm justifying it to myself!)

And so while I was sad to start double chemo today (and I'm already feeling the tiredness and headache and general icky feeling, which will build), my brain knows that it is needed and it is the best thing I can do to keep moving forward toward a possible cure. So bring it on, Vidaza + Venclexta. I welcome your destructive powers!