Fuckity fuck fuck fuck:
My multiple myeloma is still hanging around. It turns out I was right to be skeptical of the "no report means no M-protein" claim from my doctor yesterday. Today I suddenly received revised test results and this time they did include an M-protein report. It wasn't zero. It was 0.12. As usual lower is still better, but by no means does this indicate a complete remission. The cancer is reduced but far from gone.
So I guess this was just a screwup from the lab combined with a casual brushoff from my doctor. I remain part of the 20% who didn't get a complete response from Carvykti.
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Oh, no. I'm sorry. I can't relate in terms of cancer, but boy, do I get celebrating only to learn it was premature.
Sorry to hear that--at least the number is still dropping.
I hope you ripped your doctor a new one.
Ouch. So sorry to hear that. Please stay strong, and know that your fans are still pulling for you.
That sucks but at least it is down 14% from the previous result.
Sorry to hear this, KD - especially after the previous news. At least it's a small improvement.
Relief has turned to disappointment, but not lack of hope for another increasingly improved number. You have been resilient through this ordeal, so keep on keeping on.
May I add a fuck?
Let’s see what your Light Chain assay shows. You have a history with Dara and that can cause false positives with the M-spike.
" I remain part of the 20% who didn't get a complete response from Carvykti."
I'm going with, "I remain part of the 20% who haven't received their complete response from Carvykti YET. It's getting there, just slower than we thought."
Amen.
I'm sorry about this, Kevin. I don't read charts so good, but this one looks like things are still getting better. I'm hoping that's what's happening. You have every right to be angry, but be careful: I know a guy who got so angry at the time clock at work that he literally punched it. It didn't make him feel better, because it broke several bones in his hand and he was in a cast for two months. I'm not going to do the joke about him asking his doctor if he'd be able to play piano.
I double that Fuckity fuck fuck fuck. The only solution is more cat. It will all be fine, sir.
I too am disappointed and hope for your best. You are a stoic mensch, for certain sure. However, I would like to point out that the laboratory was not incorrect when they said "Undetectable". But they were measuring the wrong thing! It's not their performance that they're supposed to be reporting.......
So they were, indeed, literally correct for FOR THEM, that day, the virus was "Undetectable" within you.
"I remain part of the 20% who didn't get a complete response from Carvykti" - yet! Good luck Kevin. You're the trend line person so another couple of months maybe?
That really sucks. Last month I'd hoped your level this month would be around .07 with a clear trajectory toward 0. .12 is still lower, so I hope it keeps going down, but it's not as good as a trend as I'd hoped, and certainly tough after your doctor's mistake.
(After you posted before, in my mind I thought it over and agreed with you that it didn't seem conceivable that they wouldn't return a negative result on the report. That's just not how they work.)
Hopefully better news next month.
Don't give up. I found some studies online showing that while the median time to full response was 3 months, it ranged from one month up to 18 months. It just might be taking a bit more time for you.
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This
Very sorry for the disappointing news, Kevin. I hope that each succeeding report shows a decrease.
Damn.