On Friday June 3rd it seemed like I had been here before. It was sort of erie because here we were almost two years after the fact and meetings with my medical team showed virtually the same outcome as the first ones we had before. After having my “research visit” tests we saw Dr Kadia. I along with Janine and Sarah just like the first times we met him in July 2014, had very frank discussions about my condition and prognosis. Following our meeting with Dr. K we had an evaluation and meeting with Dr. Jones and his Stem Cell transplant team who we had also first seen in July 2014. The similarity of these two meetings was disappointingly familiar. Disappointment because for so long my treatment had been so successful. Being in remission for over 20 months gave us a since of hope that the "Miracle Drug" I had been taking would be a permanent solution to keeping my condition in check in the future. Now that doesn't seem to be my fate. Rather, much of my condition has reverted back to the levels it had been nearly two years ago.
We know my condition is getting more difficult to treat with conventional as well as nonconventional therapies. The transplant route is becoming more and more necessary for my long term survival. So for now my doctors are trying to get me prepared for this procedure by getting me healthy enough to withstand this very hard road to navigate.
During May my dosage level of the AG-221 was reduced by one half down to a 50mg tablet per day to see if my downward trending blood counts would be improved. After a little over a week of no improvement I was instructed to suspend taking the drug completely. More blood tests and another bone marrow biopsy showed no marked improvement. However, the IDH2 mutation that had been driving my illness and that was not showing during my lengthy period of remission was again evident in my new tests. Thus my doctors now believe the AG-221 medication needed to be restarted at the 100mg level in hopes it can again suppress the IDH2 mutation. This is what I did about a week ago. We go back to MDA for more testing and evaluation on Friday June 17. Preliminary blood testing on June 10th showed negligible change.
We have much to be thankful for. Such a long period of remission was never expected but it enabled us to get moved and to better prepare for whatever comes next. Everything is pointing to the stem cell (bone marrow) transplant as that next step. I have very mixed feelings about doing this. On the one hand it is the only possible cure for my condition but the success rates vary from as low as 30% to about 60% depending on how well you are when the procedure is done. Much younger and healthier people have a higher success rate but ones like me are more in the 50 to 60% range at best. The other thing that gives me cause for concern is the extreme expense involved both financially and physically.
If we do this I will be hospitalized for a minimum of 30 days followed by another 70 days of outpatient convalescence in an apartment or hotel within a short distance of MDA, not our home in Conroe. We know first hand how difficult such extended stays away from home, tied to the Medical Center, can be. Now we face an even longer period. The physical expense is far more concerning to me and our family. We will be completely uprooted once again. I know Janine will be ok with this but I wonder is it fair for her to keep sacrificing this way. Also, others in the family will be affected to a lessor but important way. Sarah and her family, because of our close proximity, will be making many more trips to the Medical Center district to check on us, visit and to attend doctor appointments. Also they will be asked to check on things at our house while we are away. I know she will do this without hesitation but I don’t want to put more of a burden on her and her family.
I’m not sure I can survive the whole process and ever get back to a healthy quality of life. Not that I'm giving up but our options are more difficult to consider. So we keep plugging along, trying whatever seems best and following each new step forward. Sorta like we started over 2 years ago. Deja Vu.
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