Wednesday 10/14/15

First of all Happy Birthday to my Mom!!  We celebrated her 80th birthday yesterday with a small party at casa de Staudt - we will take a rain-check on a true bash but it was so nice celebrating with Mom in person here.

Jim, my Mom and I had a status meeting with Dr. Avigan today (he is my oncologist and an amazing person and physician).  When I was admitted last December he led the multi-person team who worked a miracle beginning the exceptionally difficult process of getting me to remission.  I was again reminded of how fortunate I am to be here telling my story and to keep making forward progress.  I was in BAD shape back in December of 2014.  Dr. Avigan saved my life.

So back to the status meeting...our end goal with my treatment is to get me into a durable remission and get my marrow producing healthy blood cells.  Right now there is no sign of leukemia in my system (YEAH!!).  Yet it won't really be a durable and long lasting remission until my marrow is fully engrafted with the healthy donor stem cells which will enable my marrow to produce sufficient quantities of healthy white blood cells, platelets and red blood cells (eliminating the need for constant transfusions of platelets and red blood cells).  Also, until the donor stem cells become the only cells producing blood in my marrow, there is a risk my original stem cells will again produce leukemia cells.  This is what happened when the leukemia recurred in August.

To decide several aspects of my next phase of treatment, we need some more diagnostics starting with another bone marrow biopsy (yes, another one) done today to see what has changed in my marrow over the last two weeks.  Also we need to monitor this lovely rash I have that is tied to graft vs. host disease (GVH like mine is a good thing I'm told).

Dr. Avigan said any scenario begins with another round of outpatient chemo like the one I received in late August.  The chemo will attack any remaining leukemia cells (while no leukemia was present in the bone marrow biopsy two weeks ago, leukemia is dynamic and sadly could have developed since that biopsy) and provide conditioning needed prior to the infusion. The chemo regimen is scheduled to start this Friday 10/16.  It will consist of a 7 day infusion of Azocytidine along with a pill medication taken at home called Neltrexone.  These are both medications that target leukemia cells and act as immune accelerants.

The chemo will likely be followed by an infusion of the donor cells.   The infusion will again introduce healthy cells from my donor.  It will either be an infusion of T cells (mature white blood cells) called a DLI or a 'boost' of stem cells which engraft to my marrow and produce healthy blood cells.

One interesting tidbit Dr. Avigan shared is he was 'shocked' when the marrow showed no sign of leukemia after just one round of chemo.  He said generally in cases like mine the best he sees is a reduction in the leukemia.  He cautioned leukemia is dynamic and sneaky (okay sneaky is my word) so we may see some leukemia in the biopsy taken today.  If we do we have a plan for that but for now positive thoughts!!

Thanks for checking in and more details once I have the results of the latest biopsy.

Love, Maureen