Yesterday was a ridiculously long day so we slept in a bit this morning. The long and short of it is: Adrienne will start bendamustine today with another dose tomorrow. This drug is FDA approved but not for Hodgkin's so they're working on the insurance issues this morning. She'll get it every 3-4 weeks for up to 6 cycles or as long as it's working. Dr. O'Connor has several other drugs after this one, so we're happy to still have options.
We found out that all HDAC inhibitors like MGCD can cause this rebound effect. The HDAC inhibitors inhibit cell growth and when you go off, the cells can grow even faster. Adrienne has significant progression even since her CT two weeks ago and her pain was really bad last night. There's a large tumor that extends from the left lung, through the chest wall, and between two ribs. This may have fractured one or more ribs so she'll have an xray today to check. Hopefully the bendamustine will get rid of this quickly without radiation because the radiation would have to include the left lung, which could be dangerous.
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7 comments:
Oh geeze - this is all so complicated! Thank goodness you have Dr O'Connor looking out for you...why does he know this info and others don't? It makes sense since there's been so much progression in the past few weeks since being off of the trial. May relief be quick and the pain recede soon Adrienne. Give the insurance company *ell if they give you a hard time about covering the suggested drugs. Gentle ((HUGS)).
Susan
My fingers are crossed that this drug does some damage... to the hodge :)
Thinking of you.
xoxo
Dr. O always has something tucked up in his sleeve. I remember very vividly back in 02 when I rec'd GND, it too wasn't approved yet for Hodge, but it was what got me in to remission. So maybe this is Adrienne's miracle toxin :). You all are in my thoughts.
Dr O'Connor is a man I'd like to meet and shake his hand. I'm delighted that he has options open for Adrienne and doubly glad that they can start immediately.
Hoping that relief for Adrienne's pain is swift and that she hasn't had any fractures............thinking of you both and continuing to admire your strength...........Vx
So glad to hear that you have options, and are ready for this new drug. I hope that it gets right to work on that tumor.
Karen, Clare's mom
Good Morning, just a quick note before I head to pulmo/rehab to let you know I am thinking of you both. Adrienne, hope that chemo is treating you ok. Maybe even enjoying a few sites in the city.
Sounds like you got a great doc!
I think of you guys all the time! Hopefully this will work!
Sending our love
Kelly C
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