Friday, June 3, 2011

My New Oncologist for Chronic Myelogenous Leukemia

My appointment for my new doctor is quickly approaching. To my delight, I was asked to send my complete medical records to him as well as fill out a very comprehensive questionnaire. The questionnaire not only asked me about my current illness, symptoms and past, but the past medical history of my family. Normal things you would think, right? Normal, but not previously asked in such depth. It was very comprehensive and left room for my questions as well. I was instructed to bring the questionnaire with me to my appointment.

The first thing that delighted me was that UCLA was only 15.2 miles from my home; yes, it was down the 405, but it still only took me 25 minutes to get there; even with traffic. The second pleasing thing was that even though it is large medical facility, the hematology department is smaller and feels much more intimate. I did not feel as though I was in a cattle call for blood work. There are actually two waiting areas.; one for patients that are sick, not cancer sick, but cold and flu sick; and another for cancer sick patients; that are well.

My appointment was very early in the morning so the doctor was on time. He asked me for my questionnaire and we went over it thoroughly. He answered every one of my questions in a way that I understood and then told me his plan of action. His first concern was the discrepancy of my initial diagnosis; there are two different areas in my initial report, one stating that I was presented in blast crisis, the other stating I was not. It is my understanding from Dr. Paquette that it is crucial to know which stage I was diagnosed in; therefore I will be getting my actual bone marrow biopsy slides sent to him ASAP for him to personally review.

Second matter of attention is the lack of a very important blood test that was also, never done. The test is called PCR and it is used to assess the BCR-ABL; or current disease burden. It would have been nice if this test had previously been done as it would have given us a base line or where I was and where I am today, regarding my current disease. My current blood work for the day was 4,000 white cells, 3,870 red cells and platelets are 192,000. The PCR will take several weeks to get the results.

Dr. Paquette discussed the goals of my treatment in depth and set various landmarks in terms of those goals. The current goal is to normalize the peripheral blood counts within 3 months’ time with a chromosome response in the bone marrow, with a reduction of the Philadelphia chromosome to 35% or less by 6 months’ time.  He made it very clear that it is his goal to achieve the greatest depth of response, in the quickest way; as long as the side effects from the meds are tolerable and manageable. This is most important factor in achieving a favorable, long term outcome. Being that we do not have a prior PCR, we really will not know how I have been responding to my current treatment. We will use this PCR to track my BCR-ABL from here on out.

Regarding the dosage of my medication I was pleasantly pleased that Dr. Paquette does have patients on varying doses of Sprycel. He prescribes the Sprycel according to the patients’ needs. Imagine that! There is no reason to think that I will have to be on this high dosage for my entire life. Hopefully someday I will be in remission and on a therapeutic dose.

I left my appointment feeling very confident that I had finally found a doctor that spoke my language. I now have a plan and goals; both short term and long. I have an email address in which to contact him and a very clear picture of what is going on with my body and blood and what we need to do to rectify the current situation.  It seems as though my persistence has definitely paid off.

On a side note, Dr. Paquette in no way tried to persuade or pry me away from my current doctor.  He was very professional and even stated that he held my previous doctor in high esteem. I am sure that she is a fabulous doctor and perfect for many patients, but everyone has different needs. Not to mention the fact that my new doctor takes at least, half as much travel time. My suggestion to you is to search for whatever it is that you need to feel safe and comfortable; it is your body and your job to take care of it from the inside out. It is now my job to inform my previous doctor that I have decided to make a change. Ugh!

1 comment:

  1. Changing Dr.'s would 'feel' like a hard thing to do Michele, but... Worst case, your old Dr. is offended and that doesn't matter, she isn't your Dr. anymore. I would assume she would be quite understand, I doubt you are the first to seek life saving 2nd opinions - and ending up liking the 2nd Dr. better... Go with "your gut" and - YAY for the convenience! I am thrilled you've found someone that will TALK TO YOU, and -- LISTEN to your questions without answering "hmm Good question" and then heading for a PDR to look it up! Good for you! Request the change, and forget about anyone else's feelings about it.. Happy dance that you found the Dr. you have now! Love you my Belle! Always, Julia

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Bricks for the Brave!!