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January 19, 2007 (4pm)

By Margot | January 19, 2007

Well, though it sure looked good to us, the official report says it is stable disease in the left femur. There is still uptake. Dr. Willert says it’s impossible to gauge whether or not the lesion is smaller with an MIBG scan. Either there is uptake or there is not. We’ll have to do an MRI (which Sammy hates) and a bone marrow biopsy when his counts recover to see exactly how much disease is left. Then we can decide what to do from here. He’s responding to this treatment- but how many rounds of chemo do we give him? Dr. Willert likes the double MIBG trial which isn’t open at the moment. She’s seen some good results with it but I don’t think anyone thinks it’s “durable.” We are not so sure about it since it also blows through their platelets pretty thoroughly. She did say that we might want to think about three days of chemo from here on out to minimize toxcicity since Sammy bounces back in every time and seemed to do very well on the last round. Neil has some ideas on what we do from here. We’ll of course post after the we get more results in a couple of weeks and I’ll post next week on how Sam’s responding.
 
We finally got the January 2nd VMA/HVA report on Monday of this week. We were thrilled that the numbers were the first normal VMA/HVA we’ve had in months: 3.5 and 4.3 We did another test on Wednesday and already got he results back on that one VMA 6.5 which is good, HVA 10.5 (back up above normal). Dr. Willert said it’s really not that sensitive and that much difference doesn’t reallly matter but normal vs. elevated does bum us out. Ugh. Though it’s not a bad report, it sure took the wind out of my sails.
 
Margot

Topics: Progress Reports | Comments Off on January 19, 2007 (4pm)

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