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FLOT toxicity
Has anyone experienced severe toxicity from round 1 of FLOT chemo? My husband had 1st round on 1/29 with pump removal in injection on 1/30. Day 5 fatigue started setting in. This was expected. He complained of a sore throat. Day 6 his mouth and lips started swelling. Day 7 we got magic mouth wash. He had not taken in any food since day 6 and by day 9 he had pretty much stopped taking in any liquid as well. We are now day 13 of cycle and day 4 in the hospital. He has severe mucositis affecting his ability to speak, neutropenic fever with positive blood cultures. He is not able to take anything in by mouth. He has complete pancytopenia and had to receive platelets yesterday. PPN was started yesterday for nutrition. He’s been on broad spectrum antibiotics, antivirals, and antifungals. Neither one of expected this. Is this typical? if so, how did you go back day 14 to do it all over again?
They sent off testing yesterday to check for an enzyme deficiency that would make 5FU very toxic including neurotoxicity. Were any of you tested up front for this?
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I've seen this before... but is very rare indeed. In America I don't believe they even bother with these DPYD genetic tests for 5FU toxicity (reduced metabolismof the 5FU causing this toxicity)... but they do seem to routinely test for it in Europe. Strange I know. Very very rare. His chemo regimen will be changed asap!
Gary
He was upgraded to stepdown ICU during last night and is now on high flow O2. Chest CT showed bibasilar opacities believed to be associated with aspiration pneumonia from trying to swallow with the intense mucositis. I am more worried now about getting him home at this point. But, yes, chemo regimen will definitely have to be altered. Appreciate any/all prayers going his way.
Just a quick update for everyone. My husband passed away yesterday from complications of toxicity from 5FU component of FLOT treatment. This was his first chemo treatment (1/29) and he died with multi organ failure and DIC on 02/17.
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2 Reactions@scmaggie, I'm so sorry for your loss. You must be reeling that the treatment that was supposed to help your husband cause mult-organ failure. My heart goes out to you. This is a busy and confusing time. I hope you are surrounded by family and love.
Should you need/want to connect with others, now or in time, please know that there is a support group here for you:
- Loss & Grief support group https://connect.mayoclinic.org/group/loss-grief/
Sending you a gentle embrace.