Welp. Got my blood work back from Penn and as it turns out the more things change the more they stay the same. Described by Dr G. and his NP as “stable” we elected at first to continue on the ACY-1215 (Ricolinostat) trial for another cycle. As long as it was keeping Myeloma at bay – why not? Then my urine tests came back and showed a lot of growth in the protein in the urine. Dr. G. suspects that the protein in the urine is largely Kappa Chain. The thing we were hanging our hats on was that the ACY-1215 would keep the Kappa Chains down and begin to reduce the tumors in my chest to open up my breathing. Since this isn’t the case, we are turning in a different direction.
I started taking a drug called Ibrutinib today which is mostly used for Leukemia patients. Dr. G. said that of the 20 or so patients Penn had on it with Myeloma, just about all received at least a partial response. So that is encouraging.
I don’t have all the numbers up yet but IGg was normal, M Spike was lower from .4 to .3 and the Kappa Chains were high but stable. Not too shabby but not what we were hoping for. We are continuing to work toward entry in the NIH T-Cell therapy trial but unfortunately I don’t have enough Cancer as measured by my M Spike to qualify. You need an M Spike over 1.0. Dr. G. is trying to speak with them about the rising Kappa Chains as a means of entry.
Also, the MMRF – yes the organization that we support with our golf outing, the Pitch Perfect fundraiser, my nephew Eli’s #bradstrong Chargers and dozens of bake sales and trunk shows that our friends have organized, has worked to open a trial with a drug called Selinexor which has had good success with 17p deletion patients like me. I look forward to that opportunity. Dr. G. says he is very optimistic about the drug. Here is the press release:
So while there is a lot to be excited about, the present is filled with stress. I feel as if I am going through drugs like underwear. My breathing is labored to the point where some days it is hard to speak. Yesterday I hosted a lunch for 60 people on Long Island. It was difficult. I couldn’t engage people like I normally do. Some people didn’t even recognize me because of the sixty pound weight loss. People I have known for YEARS! Crazy! Ordinarily, I would have rolled over in bed when the alarm went off but I had a commitment for work. I couldn’t cancel!?! I rallied – as per usual – had a great meeting (not my best but great) and did the best I could. Who knows? Maybe I will get some sympathy trades. It was great to be out and in front of people and being productive – but at what cost? Last night between the coughing and the breathing I didn’t sleep a wink. NOT ONE WINK! Today is better. Breathing is still tough but under control.
Better days are ahead. I just want to be me again. Soon. Soon. Thanks for fighting with me. Its a great day to fight Cancer.