This past weekend Jessica and I traveled to Houston for our first appointment at MD Anderson Cancer Center. It’s an impressive campus with hundreds and hundreds of patients and staff and they really have their operations in order. The only reason we had to wait for very long was that we arrived early for our appointments. Every test hummed along at the pace suggested by the staff, and the operational efficiency gave us some confidence.
They spent 30 minutes on the intake and questionnaire about my current mental and emotional state. Unfortunately, both the physician’s assistant and the doctor were feeling sick and honestly, they should have rescheduled our appointment. I feel like I was lucky to not catch whatever the doctor had. He spent all of five minutes with us and then he was gone, which was underwhelming to say the least. Jessica and I believe their initial assessment wherein they think my treatment is too aggressive heavily underestimates how much my Crohn’s disease has affected my condition this past month.
My precipitous weight loss down to 48 kg (107 lbs) started before the chemo treatments and the TPN has really saved my bacon. I’m up to 55 kg (122 lbs) now and hoping to get back to 60 kg (132 lbs) over the next month. I seriously doubt that backing off the chemo is going to help me at this time and we have no intention of doing so at this time.
Another is at MD Anderson was they didn’t actually have all the records they needed, which is frustrating because I had called earlier in the week specifically to confirm they DID have all the records they required. So now we are getting our own copies to bring with me to the next appointment, which is a week from today. At least at that point they will be able to compare the CT scan from late November and the PET scan from the end of December with the CT scan taken this past weekend. Normally the comparison happens after the fourth chemo treatment, and I’ll have yet another CT scan at the beginning of March, so we’ll have a lot more data points for comparison at that point and we’ll see how effective the treatment has been so far.
As for MD Anderson, I’m hoping they will be able to start immunotherapy and maybe recommend a trial too. Maybe we’ll have more to report after this next check in.
Really Most Sincerely 