(Reminder once again to never donate money through CaringBridge or purchase a “tribute” - we get none of it, it only goes to the site.)
In my last update I shared that Josh had failed all the standard therapies for colon cancer and was essentially out of options, so our oncologist recommended clinical trials. Finding clinical trials is a crazy process. Grasping at straws, going off vibes because none of it has proven to work, the information is limited, it all feels like a crapshoot.
But we chose one that he was eligible for, and in April Josh started a trial at the Mary Crowley Research Center at Medical City Dallas. After 4 months of experimental chemo infusions, lab draws, echos, CTs, EKGs, 24-hour urine tests, proteinuria, severe hypertension, anemia, iron infusions, and one trip to the ER - he has now been removed from the trial because it wasn’t working. His tumor growth (in his lungs) was more than 20%, which is the threshold for “disease progression.”
Josh is still recovering from the effects of the drug. The hypertension is still not great but getting better. He’s no longer symptomatic from the anemia and iron deficiency. His final echo for the study showed a significant decrease in his ejection fraction, typically an indication of heart failure. So he goes for a follow up echo next Tuesday and hopefully as the drug leaves his system his heart will improve.
Nonetheless, we are at it again. We have asked for consults from Sammons Cancer Center at Baylor, UTSW, MD Anderson, and Mary Crowley again. He is already tentatively enrolled at a trial at Mary Crowley, they had an unexpected opening in a trial that just happens to be a drug specific to his BRAF mutation, which seems promising. He will begin the initial screening process next Friday, but in the meantime if we find something better (not even sure what that means or how we’d even know) we can always switch.
We have an appointment with an oncologist at Sammons tomorrow, to see if there are any trials for him there but also to establish the oncologist at Sammons as his primary oncologist so that going forward (with the exception of trials) he can be treated at Baylor which is where I work and closer to home that his previous oncologist in West Plano. We are also curious to hear if there are any additional treatment options this oncologist may offer that the other didn’t.
We are tired of cancer dictating our lives - financially, logistically, geographically, etc. (Josh still cannot find a job that can accommodate his treatment schedule and medical needs). But we are thankful for the good days we have even though things are never really great. Still holding out for our miracle.
