Tuesday, January 7, 2020

I have a new doctor--and a healthy heart!

Since my last post, I had a repeat (post-idarubacin) echocardiogram at St. Luke's and got the results:
My heart functions are in the normal range (LEF: 58%; GLF -19%). This means that I don't need to take any additional meds (like blood pressure or cholesterol) at this time, and won't need a repeat echo for a year.  Phew! One less thing to worry about. I'm so glad, however, that St. Luke's is proactive about monitoring for heart damage with cancer treatments.

Today I finally got to meet Dr. Atallah, who is the Froedtert oncologist taking over my care. He is just as genuine and down-to-earth as everyone described him. Greg and I both liked him. For the most part, my regimen will (likely) stay the same, but with a few modifications.

To review, when the St. Luke's team considered my 14 day bone marrow biopsy and neither my cellularity nor my blast percentage were under 5%, and they had my genetic sequencing results, they decided to switch chemo regimens to one that was more likely to work with my "complicated" leukemia. So I had the round of Vidaza (targeted at the chromosome 17 deletion), and was due to have a second round starting next week. At the same time, as soon as it became available, I was to add in the oral chemo Venclexta (targeted at BCL-2).

While I'd likely still be in the same place now, Dr. Atallah feels that one bone marrow biopsy is not sufficient to determine if I am on my way to remission. He says that there are two potential causes for my low blood counts--the leukemia or the treatment. The only way to be sure which it is is to look at the bone marrow, so he has scheduled a bone marrow biopsy for Tuesday (day 27 of the Vidaza). If (by some miracle) that biopsy shows that the bone marrow is empty (which is what we were wishing for back in December when I was waiting and waiting and waiting...), then we just wait and let my body recover the blood counts. But if the biopsy shows there's still cellularity and blasts, then we go on to the second round of Vidaza, adding Venetoclax on the same first day (likely on January 16).

Essentially, all I have to lose is another bone marrow biopsy, and I may potentially have a lot to gain. Again, given the complexity of my disease, I don't know the likelihood of this happening, but if anyone wants something to wish/vibe/pray for, it would be empty bone marrow at Tuesday's biopsy! :)

The other thing that Dr. Atallah did is change my anti-fungal. I've been taking fluconazole and it is the worst possibly shaped pill--it's actually a trapezoid--and it's dry and bitter and every morning I gag on it.


He is changing me to voriconazole, which he described as a "better anti-fungal." When I expressed my joy at being able to get rid of the trapezoid, he slowed me down and explained that I might not like the side effects of voriconazole. It can case liver disease, but it also has about a 30% chance of visual changes, including hallucinations. When I looked a little panicky, he said they weren't major hallucinations--just things like seeing spiders on the wall when they're not there or seeing flowers move in a painting. Eek!

After the reaction to platelets last Thursday, I've been super nervous about needing blood products. But both at Saturday's lab and today my counts remained above the cut-off:

Hemoglobin:   7.2 Thursday, 7.3 Saturday, 7.5 today!
Platelets:         7K Thursday, 27K Saturday, 26K today
WBC:              0.8 Thursday, 0.8 Saturday, 0.4 today (which panicked me, but Dr. Atallah said there's not much of a difference between 0.4 and 0.8--both are pretty close to zero.)

And now that I've met Dr. Atallah and have a (revised) plan, maybe my nerves will settle down some. I really should find a hobby (LOL!).

1 comment:

  1. Whew! Good ECHO results! I'm glad you feel comfortable with the new doc and it sounds like you feel things are moving forward again! Nice to have a plan in place ��

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