Chapter 8: Three cheers for … 3/27/17

THREE CHEERS for the NorCal CarciNET group (Northern California Carcinoid-NET awareness/support group)! They have some amazing resources online, and I was able to confirm that both Duke and UNC have the g-scan that Don should have done! Hooray! I suspected that the teaching hospitals would have it, but it’s great to have confirmation. It appears that there are only maybe 20-25 places in the country that have this technology and two of them are here in North Carolina. And NC was the first place in the Southeastern US to have them. We learned this weekend that the g-scan program at Moffitt Cancer Center (Tampa, FL) is getting off the ground right now, and it’s likely that there is one (or will soon be one) at LSU in New Orleans (that’s as far as the SE goes; there are several in the northeast and the others are scattered throughout the midwest and west). Of course we will inquire about this when we visit those places in April.

Also, THREE CHEERS for Novartis Universal Co-Pay card! I also discovered this through the NorCal CarciNET group. Novartis is the manufacturer of the monthly shots Don will be getting. This card will allow him to get the shots for a mere $25 co-pay (and Novartis will cover the difference, up to $15,000/year). At this point I have no idea what these things will cost. And thank goodness that we have relatively decent health insurance. (Does decent health insurance exist? That is a topic for another post.) One NET patient online said hers cost $18,000/month, but think that would be the cash payment, I don’t think she pays that out-of-pocket. I know there are numerous support organizations that help cancer patients cover on-going maintenance medications. I’ll unravel that ball of twine soon. But anyway – a $25 co-pay card, even if it only covers a couple of months – sounds good to me.



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