Update after two cycles of trial meds:

So we met with the MO yesterday to go over the results of the first CT scan; unfortunately, the report with tumour measurements was still not in; however, we were told that the largest mass in the lungs looks smaller. I would like to think that this indicates that the trial drug has had some effects. So we press on.

This has been a rather rough two months for John. He had had some postural hypotension before the trial started, but during the trial it became quite significant. My own observations told me that it usually happened on the days when John was off dexamethasone. I made up a spreadsheet showing the twice daily postural BP results and highlighted the days when he wasn't getting dexamethasone. The numbers actually showed that most of the low BP (below 60) occurred during that period. The doctor has now prescribed florinef and how, a month later, the BP seems to have stabilized.

At the same time, after two months, John's stoma still hasn't healed completely. It was leaking and worse, he was getting burned by the stomach fluids. We saw the doctor who performed the magnet procedure yesterday. He will book John in for an endoscopy so that he can go in and put clips to help the opening in the stomach close. A wound nurse who saw John a month ago suggested gluing the stoma but the IR told us yesterday that it was not a viable option as the pressure was coming from the inside, gluing the outside will not help matters at all. I do have to say that even with some leakage, the stoma now measures only 1 to 1 1/2 mm which means it has closed quite well up to a point.

With all the drama, I am happy to report that John still has a positive attitude. He is able to to keep his weight at 182 lbs though he does call me the food police. My therapist told me at my last visit that every moment of happiness makes it worthwhile. I think this is truly insightful as on reflection, it is the many moments of happiness that have helped us cope.