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Can't Catch a Break

Friday, October 8, 2004 9:21 PM CDT

I told Janet this morning that I was waiting for the other shoe to drop. Dave is still doing okay, he's feeling a little weak in the knees, and did gag once when he was coughing, but still cautiously okay.

The problems: received an email from a doc who specializes in bts. What follows is the text of an email he sent me.

"The thing to watch for is lung function.. get a referral to a pulmonary specialist for a baseline breathing test now, then repeat it frequently to catch the first signs of lung problems.
BCNU infusions are tricky if the nurses don't do it all of the time... it has to be in a glass container - not the plastic bags used for everything else, and protected from the light, and only lasts about 8 hours after they mix it unless it is refrigerated. If you notice they aren't following those rules, tell the doctor. The reason I mention this is I once talked to someone who also said he had no nausea and the bcnu wasn't working and he saw my page on bcnu (http://virtualtrials.com/bcnu2.cfm) and noted that he was getting it in a plastic bag, exposed to the light over a long period of time. He argued with the doctor who said it didn't need to be in glass, and they checked the package insert, and found it to be true. They
then tested it and found the iv bag only had a small % of the bcnu that it should have had.
Al."

Dave is getting the PFT (pulmonary function test) next week and before each new round. The BCNU was in a glass bottle, but I have no idea how long it was mixed and how long it was exposed to light, so the bad news is, the BCNU might have been compromised, and that might be the reason he has no nausea. We will call the doc on Monday and find out about the light exposure and how long it was mixed.

Big thank yous to Dale Smelcer who came and worked on Kenny's window today. Bless you, Dale, and LaDessa for offering him!

Love you all, Shelley

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