4 months into this
Hello I was diagnosed with esophageal cancer stage 4 metastasized June 24 2022. Since then I received the fast track to a PEG tube and have completed 5 rounds of chemotherapy over 10 weeks. Sept. 23rd had a normal bowel movement after tube feeding and have had straight liquid bowel movements ever since. Dr stopped chemo until we get this sorted out. My peg tube formula in hospital for last week seemed to start reversing the diarrhea until I got home and started my prescribed formula. And went downhill after 2 days so I had formula changed to what they had in Hospital. I’d like to make my own home brew tube food.I’d love to talk with others on this subject and anything related to gain as much knowledge as possible. The Drs and nurses don’t give much talk time and since I traveled all my life not many friends and only a handful of family close to home to talk with. I am positive and very hopeful we can at least control it and knock a lot of it out but I also accept the fact I could have very little time left. And I’m far from giving up I’ve done a lot in my 52 years and I was just getting started when I retired early at 50. Then WHAM I get slammed with this and very rapidly I’d say. So I’m looking forward to chatting and meeting new peeps in similar situations.
Comments
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Hi Scooter,
So sorry to hear that you are having issues with your feeding formula. Some folks have issues with the standard tube feeding formulas. Many of us have had better luck with more "natural" formulas. You may consider trying a plant based feeding formula like Kate Farms. https://www.katefarms.com/conditions/tube-feeding/
You might also consider reducing the speed at which the pump is delivering formula because that can also cause nausea and diarrhea.
I would also recommend posting your questions in the "Esophageal Cancer" section of Smart Patients, https://www.smartpatients.com/. You will find many Stage 4 EC survivors there going though treatment. That site gets much more traffic than this site and is much more interactive.
I know the feeling about being blindsided after retirement. I retired at 56 and was diagnosed with EC at 61. But that was 12 years ago, so there is life after diagnosis.
Best Regards,
Paul
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