Friday, September 9, 2016

Not the results I wanted...

I had a full week of testing, and am back home. They rushed all the results so we have prelim results much faster than I have ever gotten them back.

Everything looked good except my bone marrow biopsy which showed 5-10% of the marrow is still cancerous. When I started this protocol my bone marrow was 75-80% cancerous, so good improvement but not where we wanted it to be at the end of treatment. I meet the definition of a "Complete Remission (CR) with Minimal Residual Disease (MRD)" versus a Partial Response (PR), which is I am told is good, but I was hoping for a great outcome.

We've agreed with my doctor that I am going to fly back next week for another round of treatment. I will not go out on pass, and will likely be tethered to my floor (or if I am lucky the clinical center). We are all a lot more comfortable given my labs this week that showed my creatinine down to 0.97, and my hemoglobin and platelets back up. Also, knowing that if I stop now I will likely be back in treatment again in 12-18 months makes the decision easier to go ahead with another round to get a longer remission.

We are not really psyched up about me leaving again in a few days, but I am very glad they let me come home for the weekend.  We are comfortable that by actively managing my fluids and activity level, and proactively watching for any signs of HUS, we will keep it at bay (or at least at reversable levels) in this round of treatment.

1 comment:

  1. Beth... it's Maureen Howard. Been keeping up via your blog. Sending you lots of love and healthy energy from Cincinnati. Hi to Chad and the girls. Say hi to Kat from Audrey. Xo