Sunday, July 31, 2016

Change of Direction

The last six plus weeks have been frustrating physically and emotionally. My latest Bone Marrow Aspiration test showed the major indicator, i.e. the "Blast" count had jumped up to 13% from 5% when it was tested only five weeks before. This along with quite a bit of molecular analysis and cell evaluation confirmed remission was over and I was quickly heading in the wrong direction again. Frequent blood tests throughout this period also revealed downward trending counts to worsening levels. As a result I am getting more and more fatigued, weak and frequently lethargic and am on infection and bruise/bleeding alert and am having other symptoms of this progressive disease, MDS.

Throughout this period my doctor tried several dosage level changes of the AG-221 that had been so successful for such a surprising period. We started out taking 100mg, down to 50mg, to suspension. Then back to 100mg then up to 200mg and finally suspension, again. All of these changes were done over a two month period. Nothing helped. My team concluded through extensive testing that two new mutations in addition to the IDH2 mutation that was being targeted by AG-221 were now present rendering my condition more difficult to successfully treat. 

Therefore, our team concluded I need to be put back on a more traditional IV administered chemotherapy simultaneously with a different series of chemo injections (shots). When this was revealed last Wednesday during our most recent doctor visit/appointment I was required to start the chemo treatments that same day/evening. Pretty much disappointing is an understatement as to how we felt about doing this again after almost two years. So we were required to get a hotel room for 3 nights while my IV treatments were done on an outpatient basis because the medical team wanted us close by the MDA hospital, clinics and ER in case of problems or complications. After four daily infusions lasting over an hour each we were allowed to go back to our Conroe home on Saturday. To make things even worse, Janine, was required to administer the shots in my stomach every 12 hours for 7 days. She does not like doing this at all but does it well with minimal pain to me. By tomorrow, Tuesday, she will finish this first 7 day cycle of sticking it to me. So to recap my new chemo treatment is simultaneous IV and injections. The good news is I am on a "low dosage" chemo which should minimize negative side effects.

Today, Monday, August 1 we traveled back to MDA for the first blood test after the IV part of the treatment was completed. As expected, my major counts got worse. It's the old adage that things get worse before they can get better. On Wednesday we repeat the blood testing right after the end of the injections. It is expected blood transfusions will follow making that a very long day. Then we see my doctor and team on Friday after more blood testing. An assessment will be done and detirmination made if and when more chemo treatments will be necessary.

1 comment:

  1. it is difficult to see the words written because of my eye disease but I take my time and slowly read as I take my time and slowly type a comment , its the least I can do for such a sweet couple as you and Janine are. you and Janine are so very strong to manage to endure the pain you both must have among all of the rides you two must be taking on this emotional rollercoaster. with tears in my eyes I have been reading some of your writings about the journey you and Janine are on, I myself have had many highs and mostly lows during my illnesses, with days of whining and days of crying and days of just wanting to give up on it all. the dr.appts.are hard for me and I get real tired of all of the doctors visits, being poked on, etc., BUT reading this diary changes things for me and I am thankful to you, Robert and Janine for sharing with the whole world. What courage you have to do such a thing. To be so sick, and yet you all take the time to share with us. I will not whine anymore, my pain and suffering doesn't mean so much after reading your day to day routine, Robert, you are a strong willed person and you and janine are so blessed to have each other when I think back, way back, you two have always been special people, and I pray that God has His arms around you all and will keep you two wrapped in His glorious power of healing. He is always in your presence and always will be. Be blessed, Sheryl Collins Humphrey