Stability didn't last as long as I'd hoped. I was going for 25-30 years, but obviously not on that particular drug study. The tumor increased a bit in size on my last scan Feb 26. I was promptly removed from the study and the search for Plan C is currently underway.
Dr. F initially suggested a bland embolization. It's invasive and one I'd hoped we'd use as a fallback plan. Dr. F found a couple of drug studies as well. The studies are testing drugs to see if they effectively slow the growth of tumors while controlling the two main side effects of carcinoid syndrome. This time not so much about shrinkage, but control or slowing down the rate of growth. All are good options.
Cousin Julie and I are scheduled to see a Neuroendocrine Specialist in Louisiana today. We made the trip last night after a couple of weeks of mad shuffling to get biopsies, scans and test results to the offices here in Kenner, LA.
I'm not sure what the day will bring, but I'm hopeful and thankful I have options. It's been difficult to get my head around not being stable. "Hopeful" was harder to get to this time. It may be because there doesn't seem to be any interesting drug studies right now that could produce the shrinkage I need without risking growth. The options start being embolizations or other procedures I don't fully understand or haven't researched yet. But that's okay, that's what I'm doing now. "Hopeful" is back. It never actually left, but just needed to move out from under frustration and fear.
I understand there may not be a "silver bullet" out there for me yet, but I'll take a few strategically aimed pezzizles at this point.
I'll keep you posted. smak,
jan
I'm not sure what the day will bring, but I'm hopeful and thankful I have options. It's been difficult to get my head around not being stable. "Hopeful" was harder to get to this time. It may be because there doesn't seem to be any interesting drug studies right now that could produce the shrinkage I need without risking growth. The options start being embolizations or other procedures I don't fully understand or haven't researched yet. But that's okay, that's what I'm doing now. "Hopeful" is back. It never actually left, but just needed to move out from under frustration and fear.
I understand there may not be a "silver bullet" out there for me yet, but I'll take a few strategically aimed pezzizles at this point.
I'll keep you posted. smak,
jan
3 comments:
I've been showing up here regularly but somehow missed this post. Thinking about you and sending positive vibes your way, my friend.
shizzle indeed. hmph!
have been thinking about you and love to see that you have mozes. let me know if you want to hit one of the dog parks for a ziggy/mozes playdate!
Hey just found you on Google. Keep fighting the good fight. Best wishes from Madison Wisconsin
-- Keith
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