I am very frustrated with my current situation and am hoping to get recommendations from other CML-ers in and around New York City. I am being seen now at Beth Israel and, while I like my doctor (and think he is knowledgeable), the disorganization on the part of the Cancer Center in which he practices is really getting to me. I have read that many of you get to have a blood draw and then go in to meet with the onc once the results are back. They will not do that at my CC, because no one trusts the nursing staff to do things right without close supervision. But the current set-up doesn't ensure that things are done right either. Twice, I have had to come back for redraws due to the right vials not being filled. (I now know which vials are for which tests and check them myself.) It is also difficult to get anyone to call me back. I have been trying since Monday morning to come in for a stat CBC to check whether I'm anemic. I started Sprycel relatively recently and my gums are white; my sister, who is a doctor, said I need to get it checked right away. No one will call me back. I am not the kind of patient who calls all the time (or really ever), so when I do think something is wrong I'm generally experiencing something fairly extreme. They are late getting me my PCR results from my last visit; I mentioned that as well when I called and no call back.
I am not in a position to travel out of the city for care given my significant work and childcare responsibilities. Those of you who see doctors in NYC and are happy with your care, could you let me know whom you see? Also, could you indicate whether you get the blood draw in advance of your appointment with the onc? This seems much more efficient to me and I'd like to see someone who does this.
Many thanks for your input!