Measurements

Dr. Goldman's claim that the tumor has grown significantly has bothered me ever since. So, I decided to find all the numbers myself and get to the bottom of this.

I dug up all the MRI reports from Chicago that I could find. Here they are:
(mass is determined by multiplying the three dimensions - subtract the difference from baseline and divide by baseline to determine the % of change)

04/28/04 - 3.4 X 4.5 X 4.2 cm (mass of 64.2)- baseline
01/19/05 - 3.5 X 3.9 X 3.3 cm (mass of 45.1)- 30% decrease
04/20/05 - 3.2 X 3.8 X 3.8 cm (mass of 46.2)- 28% decrease
06/28/05 - 3.4 X 3.8 X 3.8 cm (mass of 49.1)- 24% decrease
11/01/05 - 4.2 X 4.0 X 3.3 cm (mass of 55.4)- 14% decrease
02/20/06 - 3.7 X 4.4 X 1.7 cm (mass of 27.7)- 57% decrease
05/13/06 - 3.4 X 4.3 X 2.5 cm (mass of 36.6)- 43% decrease
08/20/07 - 4.0 X 3.0 X 4.6 cm (mass of 55.2)- 14% decrease
11/17/07 - 4.3 X 3.0 X 5.0 cm (mass of 64.5)- back to baseline
01/11/08 - 4.4 X 3.1 X 5.1 cm (mass of 69.56) - 8% increase

This is my take on it. This shows fluctuation. I don't think the tumor fluctuates like this, I think it is a difference in measurements - probably a different person measuring. It actually makes me understand why they declare "stable" with any change under 25%. If you declared change every time a measurement varied from another, you might drive yourself crazy (if you have not already arrived there). But, I still don't like that practice - that is what allowed James' tumor to return while off treatment for 2 years and all we were ever told was "stable."

I do believe, though, that this implies that for 2 1/2 years the tumor shrank and then for the last year we have slowly lost ground. It probably means we should have considered increasing his dosage a year ago, not two months ago.

I mentioned my problem to Dr. Barbara at the clinic and she spent the entire day tracking down numbers, had Dr. Kahn remeasure the tumor two times, and met with Dr. Burzynski to review them again.

Dr. Barbara called me back to let me know the comparison they have between the two facilities. They have taken the sq. cm. from the Chicago MRIs, making it possible to compare their results with Chicago. Here is what she said, comparing the baseline MRI with the most recent MRI:

In April of 2004, Chicago measured a tumor that was 15.54 sq cm compared to Houston's 15.99 sq cm. Although it is slightly different, it would be considered the same.

In January of 2008, Chicago measured a tumor that was 15.81 sq cm compared to Houston's 13.77 sq cm. Now, this is a significant difference in opinion.

Dr. Barbara questioned Dr. Kahn about the difference in this last measurement. He noted that there is a cyst attached to the tumor. If you were to measure the tumor WITH the cyst, you will get 3.1 cm in that direction - WITHOUT the cyst, you will get 2.7 cm. This would make the actual tumor size 14% smaller, but if you wanted to factor in the cyst it would be 1% bigger - or a stabe tumor.

Okay, so the bottom line......we have a tumor that is anywhere from 1-8% increased (which even in standard treatment would be considered nothing - stable) or 14% decreased. Let's take the mean of it - 7% decrease (which, again, basically means no change).

It is clear that we obviously had a reduction in the tumor around February - May of 2006. I do wish we still had that and didn't lose ground. But, unless the tumor either continued to slowly grow or showed that it simply isn't going to respond to treatment anymore, I don't think we are at a place yet to need to change treatments - the biggest reason being that most other options are only successful in stabilizing a tumor. It seems that we have at least accomplished that with antineoplatons.

Maybe you are saying that this seems like a lot of hullaballu for nothing. But, I had to settle this in my own mind. If someone wanted to claim that they didn't like antineoplastons because it has kept James' tumor the same size, I wouldn't argue with them (although I wouldn't agree). But, to say that his tumor is anywhere from 60-100% increased since starting this treatment simply is not true.

Now......that settled......we will pray for some good results on the next MRI, which I will be calling this week to schedule for the beginning of March. We certainly appreciate everyone's prayers.