Have had CML since July 2011. Loved my first doc - from NYOH, he got me through the initial months of my war with CML. Unfortunately, he retired in 2012 - I went to another 'younger - so he wouldn't retire' doctor at an NYOH office closer to where I work. Unfortunately, I don't feel like I am getting the same level of care I got from my first Hematologist. He is 'extremely doubtful' any of the pain I have is related to my daily 100mg of Sprycel, and this year he has moved me to 6 month appointments. To top that off, I recently discovered that he did not feel a 3 month blood work was necessary until I pushed for it. When I called for the results - he has someone on staff call me back and say 'everything still looks good'. Don't know any of my specific counts - need to call back again and ask for specifics if I want that. I just feel I need to try for another connection. I am going to take another posts suggestion of going to the city (either Boston or NYC) at least for a 2nd opinion - but I am not sure I will be able to always do a 3 hour drive each way for my appointments - I would be going to all appointments on my own. Was wondering if anyone could recommend anyone in the Albany, NY area? Appreciate any feedback.
Anyone know of good CML doc in upstate NY?
Posted 28 March 2014 - 01:23 PM
Sorry I don't know anyone there but if you come to city I can recommend two. One who won't lower your dose and one who might, although after me he might be reluctant to do that
Best of luck
Posted 28 March 2014 - 01:51 PM
That's really interesting. My oncologist just said the same thing to me earlier this week. He said that many doctors "recommend" doing the PCR every 6 months. I had never heard of this previously. Maybe it's based on response level? I am CCyR but it took me a while to get here. So I'd prefer to stay on the 3-month cycle for now at least. In any case I always get copies of the blood work.
Posted 28 March 2014 - 02:10 PM
Thanks - I'll let you know if I look to NYC instead of Boston.
Posted 28 March 2014 - 02:13 PM
SO glad you have heard about the 6 months... have to admit I was a bit taken aback. I see him in June - going to ask about it then. I too prefer the 3 month checks, seems like so many on this blog have seen changes that are sometimes unexplained that I would rather stay on top of it. I used to get copies of my blood work with my original hematologist and when I first started with this new doc - but lately no. I just need to articulate exactly what I want better.
Posted 30 March 2014 - 07:41 PM
The guidelines say between three and six months. I've been having six monthly tests since being CCyR.
Not sure how the blood test requests work in the States, but in Aus I am able to get a copy sent to my GP, who then forwards it all onto me. I like to know what is going on before I see the Specialist.
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