Sorry for the wall of text. But hi guys here's a quick summary of my journey so far. So I was diagnosed with CML on April 2011. My WBC was up to 600k. I was admitted to UCSD Medical Center and began Gleevec and had good response which brought my WBC down to normal levels. I was uninsured at the time and since I didn't live in that county, I had to continue getting treatment at my county and go to Riverside County Medical Center. For the rest of the year, I was on and off and had to change dosage of Gleevec because they worried about my platelets. I stopped Gleevec April 2012, my WBC was 4.9 and PL was 62k.
The following month, May 2012 I was switched to Tasigna. Started at 400mg every 12 hours but was lowered to 200mg every 12 hours because of low platelets. I had to stop and start Tasigna because they were worried about the platelets once again. My WBC was 5.2 and PL was 37k on September 2012. I was finally approved for Medi-Cal and maybe because of that my oncologist suggested bone marrow transplant as an option and referred me to City Of Hope.
So many things was happening at the time so I didn't get a chance to even go to City Of Hope and through out the year 2013 I was medically unsupervised. My spouse enlisted in the Navy and for the majority of 2013 we were at Florida for training. I still had boxes of Tasigna which I self administered but not a consistent basis, I took a pill here I took a pill there, through out the time we were at Florida. We didn't know how long we were going to be there since we could have been stationed anywhere at any time so my train of thought at the time was once we get stationed at a permanent place, that's when we'll get stability and I'll see an oncologist.
Finally in February of 2014 we were stable back in California and I began seeing an oncologist at Bob Wilson Naval Hospital. As expected my WBC was back up to 205k so I began Tasigna at 200mg every 12 hours. By the time of my 3rd "cancerversary" April 2014, my WBC was at 6.6 and PL at 76. August my PL went really low at 46 so I had to stop Tasigna. Went back on a few months later and by the end of the year December 2014 WBC was in normal range but that PL was low at 59k.
I had a bone marrow biopsy done on March 2015 and FISH was 44% PCR peripheral blood 9.31% and PCR bone marrow 60%. Since my oncologist was active Navy, he had deployment for a few months so I had to see a different oncologist but same clinic. So me and the new oncologist discussed prior treatment and prior facilities where I was seen. I brought up UCSD Medical Center since the oncologists there were CML specialists and one of the oncologist I remembered at the time is also a BMT specialist. So he referred me back to UCSD Medical Center to see that BMT specialist to see if that's a viable option.
That conversation was back in April 2015 and through out this time, my spouse and I were expecting our first child. My son was born at the end of May 2015. Like four months after, just last week October 7th I finally had a consultation with the BMT specialist at UCSD MC. I think he kinda remembered me from when I was first diagnosed and first admitted there. He was one of many who was there. We went over my medical history and brought up that I have 5 siblings that may be possible donors. I had my blood drawn for CBC and I believe HLA testing and my next appointment will be next month. I spoke with the BMT coordinator and gave my siblings information so they could send out the test kits.
Now just this week October 14th, my oncologist from the Naval Hospital was back so I had an appointment with him. My WBC is 5.7 and PL is 92. We had a serious conversation about how I was not responding well with the two TKI drugs, Gleevec and Tasigna, and maybe the best option is bone marrow transplant. I'm ready to take whatever steps that needs to be taken but I still have hope that taking another drug may be a better working option especially since we have a 4 month old now.
So I'm continuing to take Tasigna, and since he's back he'll monitor my progress. I have an appointment with him next week at the Naval Hospital and at the same week I have labs at UCSD MC. I'll talk to him again on what other drugs are there. Since UCSD MC has CML specialists I feel more comfortable going there even though the oncologist I'm seeing is known to be a BMT specialist, Dr. Ball.
I really feel that I just need to be on a different drug. I just turned 35. I'm in good shape with optimal weight and BMI. I have Tricare Prime medical insurance now. The only medical issue I have is CML. I just don't want to burden my siblings even they'll do anything to help and the process of BMT is going to be very difficult especially when we have a 4 month old and my spouse is active Navy. And I know BMT is considered to be one of the last options. Is this really my only option?
So I'm just wondering if there are any comments about my situation? Also I asked my oncologist about this but he said taking both 200mg of Tasigna at the same time to meet the daily 400mg is fine. I know the normal dosage is 400mg every 12 hours. But since my dosage is modified, should I be taking them 12 hours apart as well? Or taking both 200mg capsules at the same time is sufficient? Are there new effective drugs? Any suggestions on other CML specialists in the San Diego area or in California? Maybe I should get back on Gleevec. Sorry for the wall of text. Thank you for taking time to read.