Many of you have been asking and wondering how I am doing so we thought an update was in order…

Overall, my spirits are high and the Talvey is working.  The side effects are in full effect and, while not life threatening, they are much more than we anticipated.  Most annoying, is the eating away of the skin on my hands and feet and the destruction of my fingernails.  The only one who was elated to see this was Dr. Gaballa.  He said seeing this and the fact that I no longer have any pain is the surest sign the Talvey is working. In fact, he said he’s never seen anyone with such destruction of the skin and nails so early on with Talvey.  He credits that to the fact that I’m younger and stronger than your average MM patient.  I’m grateful the pain is gone and I no longer need any of the pain medications.  Aside from a few other side effects like weight loss, sporadic fever spikes, diarrhea, significant loss of appetite, extreme dry mouth, change of taste and constant fatigue (all due to the Talvey), I’m doing well.  

The GPRC5D protein that Talvey targets on the Myeloma cells is also present in the skin, nails, tongue and the stomach lining, hence the side effects.  This will all reverse once I stop taking it.  

My blood work looks good.  My WBC is higher and in the normal range.  My T-cells are still low but heading in the right direction.  This is mainly because they are out of the bloodstream attacking the MM, etc.  Most notable, is my Myeloma protein level (M-spike) has reduced. For perspective it was 3.2 upon initial diagnosis last May, 0.5 on 4/2 and is now 0.4.   The desired level is ZERO.  

The plan and goal remains Carvikti - the carT systemic immunotherapy treatment that we are trying to get to. We just need my T-cell (absolute lymphocyte) count to get a little higher in order for there to be enough T-cells to collect.   It’s at 0.15 now and they will collect once it reaches 0.3.  After the Talvey dose tomorrow, they will monitor my blood work each week for the next 4 weeks in hopes to see a 0.3 or higher count.  As soon as that level is present, they will collect my T-cells, take them to a lab and genetically engineer them to target the BCMA protein that is present in myeloma cells.  Since I have over a 90% proliferation rate of BCMA present in the myeloma cells in my body, this should be an extremely effective treatment for me, giving me a deep and long remission for years to come - that is the hope.  

For the future, we learned of lots of exciting and new immunotherapy and bi-specific treatments that are emerging and already showing promising results in trials both at MDA and other leading medical institutions worldwide.  This is reassuring to know.  

We hope everyone is doing well. We appreciate so much your thoughts and prayers as we continue moving forward and crushing cancer!

Burton & Susse