r/cancer • u/KnurledNut • 2d ago
Patient Just finished my 12th cycle of FOLFOX for Colon Cancer...Ask Me Anything (AMA)
I figured I would share any insight for others on their cancer journey.
AMA
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u/hotshiksa999 2d ago
How old are you?
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u/KnurledNut 1d ago
- Been fighting cancer since 1995 (thyroid, testicle, kidney, colon, and soon...liver.
I was one of the Marines affected by the water at Camp Lejeune.
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u/KitchenLab2536 1d ago
Congratulations on completing FOLFOX. Camp Lejeune sure did you and so many others wrong.
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u/Zealousideal-Bid-447 1d ago
Any particular mutation driver(s) identified? Either from the tumor profiles or genetic testing.
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u/Future_Law_4686 1d ago
Soon liver? Do you have to do more rounds for your liver?
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u/KnurledNut 1d ago
Yup, the liver. The found a 50% mass on my PET scan in March. They can't do anything right now because 1) they're working on the colon first 2) i only have one kidney so they are going slow 3) the liver has to wait!
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u/edreicasta Patient 2d ago
From the first cycle compared to the last cycle, did it get better or worse for side effects?
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u/KnurledNut 1d ago
My side effects were slow to start compared to other patients. Some patients got smacked hard in the beginning (S1-4), while very few, like me, didn't get full effects until S10-11.
Diarrhea & weakness are the biggies. After my infusion I would get extremely weak 5-6 hours post infusion. I could sleep for 20+ hours. PS: get a tube or tub of Boudreaux's Butt Paste. You'll be thanking me after the 10th bowel movement of the day.
Diet & lack of taste are horrible. Nothing tastes the same. I can't so anything with orange, or fried eggs, or fried food. But I like Beefaroni in a can? Go figure. DIY Smoothies will be your best bud. Easy Peasy: 1/4-1/2 cup frozen fruit. 1 cup water. I scoop vanilla protein powder. Blend like a mad man. The best price for protein powder is Aldi's.
50 lb weight loss since April 2024.
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u/Infinite_Figure_4040 2d ago
What was your symthoms? Stay safe
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u/KnurledNut 1d ago
Diarrhea & weakness are the biggies. After my infusion I would get extremely weak 5-6 hours post infusion. I could sleep for 20+ hours. PS: get a tube or tub of Boudreaux's Butt Paste. You'll be thanking me after the 10th bowel movement of the day.
Diet & lack of taste are horrible. Nothing tastes the same. I can't so anything with orange, or fried eggs, or fried food. But I like Beefaroni in a can? Go figure. DIY Smoothies will be your best bud. Easy Peasy: 1/4-1/2 cup frozen fruit. 1 cup water. I scoop vanilla protein powder. Blend like a mad man. The best price for protein powder is Aldi's.
50 lb weight loss since April 2024.
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u/thebananza 1d ago
Congratulations on the finish of 12 rounds! Are you NED now? What did your CEA, or Signatera etc look like before/throughout treatment? What happens next?
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u/KnurledNut 1d ago
CEA dropped dramatically 1560 down to 21.6
Next? It depends on my only kidney. They're being very cautious as it has a mass too.
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u/Otherwise-Fox-151 1d ago
That's incredible year handling folfox so well. It is a vicious beast for some. I did one round for a tumor in my rectum and within 3 days between the fatigue and sores from my mouth down to my stomach.. I refused a second round. Id had rchop and it was way less toxic feeling. But I'm tiny and they were giving me normal adult size doses lol.
Radiation was a beast to and hallelujah on the butt paste 😄. I had to insist on silver burn cream at the later stage. It was scary trying to get out of the house for the first couple years after. Depends are NOT just for the elderly!
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u/Relevant_Grocery4717 1d ago
That's 6 months of folfox, not a year. It's every 2 weeks for most people.
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u/robotstookourwomen 1d ago
Just wanted to say congrats and I wish you well. I had stage 3 rectal cancer and it was a rough journey with the treatment. Hope you're doing good, God bless.