Hi All. Back from City of Hope (COH) in L.A. last Thurs but only for 24 hrs. Was off again for a desperately needed weekend away (my first & physician approved). Returned home late Sunday night to prep for Monday's SCCA appt....and exhausted since. Sorry for the delay...again.
My City of Hope 2nd opinion was everything I hoped it would be. As expected they did indeed offer their version of a mini/midi Transplant. COH is more concerned with getting Stem Cells back on board again. However, they did indeed agree that a slightly larger dose of DLI would be another appropriate and more "benign" treatment option. Dr Nakamura was highly knowledgeable, well published with numerous hematology/MDS/stem cell transplant/GvHD papers, was soft spoken, and ultimately agreed that I was indeed a rather unusual case with a 7 yr relapse, no stem cell recovery post-chemo, no immune system, and surviving on weekly blood transfusions, yet doing surprisingly well. Hell, Fabulously well !! He likewise presented my case to COH's tumor board/case conference where difficult cases/patients care are discussed. Per his phone call on Monday they too agreed with his consult. And THIS is exactly what I was seeking; after numerous and significant hiccups here, to RE-instill the confidence back in my care at SCCA.
I was also blessed enough to be hosted by a fellow Transplant patient almost 2 years out whom sailed with us on Selah during last years Seattle Leukemia Cup race. Stephen & Erin were lovely and not only offered their home as base while in L.A. but Stephen likewise accompanied me to & participated in my appointment with Dr. Nakamura. This in itself was priceless support, especially from someone who has literally been there done that. Erin, a pharmacist, was likewise instrumental in seeking information about potential drug treatments. I owe both Stephen and Erin many many thanks for opening up both their hearts and their home to me. Along with them I likewise owe many thanks to those that offered to help with mileage to L.A. More specifically to old dear friends Beth & David, bless their souls. Huge bear hugs & kisses to both of these couples.
Moving forward... for the very first time my WBC crested to a single digit: 1.01 (yay !!) and more importantly my neutrophils, so desperately lagging, finally & consistently stayed above the 0.50 level. On Monday they were 0.63 ! Not only the highest they've been, but the largest increase in one shot. Perhaps "something good comes this way"?? Because of this Dr. Laura said they would like to do another DLI at a slightly higher (and more complicated) dose, before any chance of the return of Leukemia blast cells. To ensure my marrow is still in Remission I now have a BMA scheduled with the DLI to follow next Wednesday. This DLI will be a longer procedure after infusing Bruce's thawed Lymphocytes including several hours of close monitoring due to a cryopreservation additive. It is expected that this DLI will give Bruce's cells the boost needed to produce & protect my/his immune system from the return of the cancer...the much sought after "Graft vs Leukemia" effect.
Keep fingers & toes crossed for this needed forward momentum. Here's to DLI #2...
