I got my stuff back from Dr. Dugan today. Actually - I only saw Dr. Dugan for about 45 seconds, but his practicioner pulled all my numbers for me.
In short - I'm not sure what is going on. I'm considered to be in Hematologic remission, but the results of my PCR-ABL test don't really tell me anything. It essentially says that I am positive for the chromosome 9-22 transversal (which I already knew), and negative for PML 15-17 chromosome fusion. I guess its good that I don't have any other chromosomes flipping around, but I was expecting some sort of number.
Dr. Dugan said that the numbers become important in the next three months then again at a year. My concern is I think I got the wrong test so in three months they're going to realize that we should have gotten a different one. I also learned the Dr. Dugan is actually a prostate specialist and Dr. Bhatia is their hemo guru. I'm tempted to get a 2nd opinion at this point - I feel like I'm the one doing all the leg work/research and most of the time I don't even get my questions answered.
To top things off, my Bilirubin levels are really elevated. I have been told for years that they're higher than normal, but they seemed really high (and rising) during this last test. I'm supposed to get a call from Novartis in the next day or two to talk with them about this and the glaucoma as potential side effects. For $3,000 per month, I would expect to be less of a guniea pig.
I'm probably coming across as angry - which I'm not. Just frustrated that I seem to be the only one who even reads my blood counts and data.
Grrrrrr...
About Me
- Aaron Kohn
- Father of two amazing kiddos (Eli, 4 and Maris, 2). Married to Kristin for more than 5 years and loving every minute of it. Also have 2 dogs, lots of fish, some amphibians and more. Diagnosed with Chronic Myelogenous Leukemia at age 34. Currently living with cancer and loving life.
2 comments:
If you're urged, get a second opinion. That's one thing we learned with Alison's diagnosis... no doctor knows all, and your care is basically in your hands. We wished she would have gotten second opinions in the beginning. Then she wouldn't be where she is right now. So if your gut says to, do it.
Just my two cents. :)
Something that I observed through school and working with patients; you are your best advocate, you know your body! You'll make the right decision. Yard work looks awesome! AmyP
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