Hello Friends -
It has been awhile since I have been on the boards. But I am needing support and assistance in my decision making processes and recommendations.
First the facts: From Missouri - my doctor is with the University of Missouri - DX in June 2009. Started gleevec 400 mg in July 2009 (after stabilizing my blood counts). By October 2009 showed Major Molecular Response - under .1 with my pcr results. For next one year stayed at .03, .05. .04 in my PCR results.
I have been very satisfied with my care since dx - especially with the fellow that was part of my healthcare team. (he left in july 2010)
In January 2010 I took an internship (late masters degree, I am single and 47 - one daughter who lives in DC) in Indonesia - I was on a career track for international humanitarian relief work prior to dx and have continued that track.
In February 2010 my platelet counts plummeted and my dosage of gleevec was cut to 200mg per day (from 400)
In July 2010 - my cbc counts started being high (12,000 - 20,000) during my regular blood checks. In october 2010 my pcr was slightly elevated at .05. Dr. thought the risk of platelet dropping was greater than the advancement of leukemia - still at MMR - so hold steady (despite my questions that maybe we shoudl be more aggressive).
December 2010 - WBC is hovering in the 20k - 25k mark (I was 410k at dx). My PCR is .145 - elevated significantly from the past 14 months.
Doctor is increasing my dosage of gleevec to 300 mg. (we will monitor the platelet count with weekly blood draws and another pcr in 4 weeks).
I am wanting to maintain my role/life/job in Indonesia - up until now my doctor has been very supportive of this choice. At this point the new fellow is supportive (we will establish a baseline pcr in australia or singapore and make collaborative tx connection with hematologist/oncologist in singapore or australia). At this point I am going back to indo - i feel as though sitting around waiting on blood draws in america will be more damaging to my mental state and i can wait for blood draws by being actively engaged in a life/job i love from indonesia. I can be home in 24 hours if something isn't working - and i have access to labs and good communication systems.
1. Has anyone else seen an increase in PCR? Did you stay on gleevec (increased dosage) or change to another drug? (Dr. is worried about resistance)
2. I need referrals of experts/researchers in Singapore or Australia (both easily accessible from my location in Indonesia). do you know anyone? I have not been able to figure out if gleevec is available in singapore, does anyone know? That will effect my decision regarding whether to collaborate in my healthcare in Singapore or Melbourne. I have a friend who is the director of the NIH cancer genome center in DC and he has recommended National Hospital in Singapore - says they are state of the art research center and very progressive.
3. I am wanting to change my primary oncologist to someone on one of the coasts - that is more experienced with international movement and travel - will be more comfortable with international healtcare management team and international travel/lifestyle. I have left a message with Dr. Druker (he is supposedly accepting new patients).....I can go anywhere for my healthcare. So....if you could go anywhere for healthcare who would you choose and why?
Those are my most immediate questions.....I am sure your answers and input will generate more questions. I look forward to hearing from each of you.....