Hi, All - I went down to St. Louis yesterday for my every-6-weeks visit. It was a beautiful day: the temperature was in the 50sand daffodils, forsythia, and star magnolias were blooming - hopefully, it will get that way in Lincoln soon.
No CT scans results this time. They did say that my natural thyroid hormone levels were lower, which is a good thing. The tumors are thyroid material and produce the hormone. (In spite of that, I still have to take thyroid replacement drugs - I don't understand this, but there it is.) They can measure the natural thyroid hormone level and the lower the reading, the less hormone the tumors are putting out. It may be an indication that the tumors are smaller. (This is how I interpret it.)
I've been in the study for a full year now and I've found out a little more about it. There have been a couple deaths in the past year, but most of us are responding well. (That's all the detail they will give.) They still plan to present a paper on it in June and we'll see what happens after that.
They gave me a couple more things to try for the side effects, which were pretty bad this last cycle. I had a nasty virus in the 2 weeks that I was off the drug before starting the last cycle and I think starting from a lower physical level made the side effects worse. I'm feeling pretty good at the start of the current drug cycle so I'm hoping it'll be better this time.
Next trip down is May 14. I think I will have CT scan results this next time.
Thanks for all your prayers and support!
John
No CT scans results this time. They did say that my natural thyroid hormone levels were lower, which is a good thing. The tumors are thyroid material and produce the hormone. (In spite of that, I still have to take thyroid replacement drugs - I don't understand this, but there it is.) They can measure the natural thyroid hormone level and the lower the reading, the less hormone the tumors are putting out. It may be an indication that the tumors are smaller. (This is how I interpret it.)
I've been in the study for a full year now and I've found out a little more about it. There have been a couple deaths in the past year, but most of us are responding well. (That's all the detail they will give.) They still plan to present a paper on it in June and we'll see what happens after that.
They gave me a couple more things to try for the side effects, which were pretty bad this last cycle. I had a nasty virus in the 2 weeks that I was off the drug before starting the last cycle and I think starting from a lower physical level made the side effects worse. I'm feeling pretty good at the start of the current drug cycle so I'm hoping it'll be better this time.
Next trip down is May 14. I think I will have CT scan results this next time.
Thanks for all your prayers and support!
John
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