Yesterday I had my 2nd opinion at Thomas Jefferson. The fellow I didn't care for (made me feel like I was wasting their time coming in since my counts were under control and only had CML since October) but the main doctor was WONDERFUL! Really sat me down and made me feel extremely comfortable with my diagnosis and treatment. My husband and I asked probably 15 questions and she answered all of them candidly. Here are some examples:
- Are we sure its CML without a BMB at diagnosis? ANSWER: Yes, based on the BCR/ABL test and the elevated CBCs with the specifics under the WBC, yes. It would have been nice to have a baseline BMB to see if there were any other mutations or anything crazy, but it's OK that it didn't happen.
- I asked about the timing of having another PCR done. I haven't had one since dx in October. She said she ordered another one when they took my 6 viles of blood (YEAH), but it's ok. Since I'll have my first BMB at 6 months (end of April), it's fine.
- She agreed with my onc that they would expect me to be in MMR at 6 months based on my counts since diagnosis. If not, we may need to discuss changing treatment because there is no reason I shouldn't be in MMR with the counts as they are.
- My mom's doc (an oncologist) questioned why no one talked to me about a BMT since I was young (will be 37 in May). This doctor said she loves doing BMT because it's the only cure. She said unless the meds start not working, no BMT (which is what I hoped she say). She did do the test for specifics for transplant in case I need to go down that route and asked about family for potential donor information - but she does not expect me to need it.
- I asked about potentially being taken off the tasigna at some point. She said - maybe - but not for many, many years. The chance of relapse after remission within the first few years is high. She said maybe in 10-20 years I could be taken off. Hopefully by then, there will be some more research as to how / who can be taken off.
So all in all - great experience. I wish this doctor was at my cancer center. I really, really liked her - from her knowledge and personality. She knew of the doctors in my practice - which also made me feel a little better since she said they are good. She said they are there if we need her...so I'll stick with who I have knowing I have someone else to bounce things off.
I'm really glad I did this.
