We traveled to MDA on Thursday and spent the night at the MDA Rotary House to be close to my clinics for the Friday blood tests and appointment with Dr. Kadia. I was also able to meet Lori Griffin, our Stem Cell Transplant Coordinator, that Friday morning after my blood draw. She and I have talked on the phone several times but we wanted to put a face with a voice. She is a delightful person and was so accommodating to us. Her latest news was that the potential donor had requested a different sample collection site than the original one in their enrollment on the registry. This puts a further delay in getting the transplant done anytime soon according to Lori. Unfortunately, they can't tell us how long or when we can proceed.
Doctors Kadia and Jones (transplant Dr) have collaborated on a different plan. Neither one of them want me to do another round of the chemo that was in my current trial because it left me with such a hard recovery and the next round could jeopardize my having the stem cell transplant any time soon. Since the above donor delay will likely delay things anyway, it seemed a good time to try to get me approved for the new "study" we noted in a prior post under "Change of Plans". Also, this new approach is appealing since it is not chemotherapy but a medicine aimed at a very specific genetic cell group. Likewise, the side affects appear to be far less than chemo effects me. During our appointment with Dr. Kadia he advised that I was the next person on the wait list to become a part of a new study presented at the 2014 American Association for Cancer Research (AACR) Annual Meeting AACR that showed promise for a new targeted therapy for acute myeloid leukemia (AML) as well as patients with High Risk MDS. The drug, called AG-221 (Agios), is targeted to the isocitrate dehydrogenase- 2 (IDH2)-mutant protein expressed in AML. This is the IDH2 inhibitor believed to be the source factor in the progression of my disease.
If all goes well I should get a slot by sometime next week according to Dr. Kadia. Then we will go back to MDA to begin the preliminary testing in preparation for my treatments. This is now scheduled for next Friday, October 3rd provided I get an open slot by then. We will be having a minimum stay of 28 days. The protocol consists of a daily oral dosage of a pill that can be administered by us where ever we are staying. Unfortunately, that can't be at home in Jackson because we must be blood tested and closely monitored by our MDA team according to the study guidelines.
So it looks like we are seriously looking for an apartment or extended stay housing instead of the expensive daily rate hotels we have been staying in during our shorter stays. We are on the wait lists for a few near the Medical Center that offer assistance to Cancer patients although it's unlikely we can get into one of these on such short notice. Likewise, some of these require a stay of three or more months. Since we may not get to the transplant phase for several months we are once again in the "unknowns" of logistical planing. We are hopeful something can be found to meet our needs.
Needless to say, I am delighted to not be taking another round of chemo right away, yet apprehensive about the new study and whether it will work for me. I guess you can say we have become health care pioneers in this journey. I've often wondered what it would feel like to be a "Guinea pig", so now I will find out.