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by MetastaticEquilibria
Thu Dec 12, 2019 6:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Folfiri and Nausea
Replies: 12
Views: 923

Re: Folfiri and Nausea

FOLFIRI was much worse for me than FOLFOX. Emend helped. Also had dexamethasone for first couple of days. This combo generally worked well enough to keep me from throwing up, though the dexamethasone gave me hiccups. Besides nausea, though, FOLFIRI generally left me feeling crappy and listless for a...
by MetastaticEquilibria
Thu Dec 12, 2019 4:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colon Cancer Research Project
Replies: 13
Views: 994

Re: Colon Cancer Research Project

Ok, let me take a stab at some answers: 1. Your nutritional habits up to diagnosis and your personal feelings on it's significance to your current diagnosis Nutritional habits: mixed Western and Japanese diet, probably not the healthiest, but not the worst either. Probably drank a bit more than I sh...
by MetastaticEquilibria
Tue Dec 10, 2019 4:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What is radiation/chemo treatment actually like?
Replies: 17
Views: 1072

Re: What is radiation/chemo treatment actually like?

Others have discussed the mechanics of radiation, which can vary but should be broadly similar. I had a full dose (60 Gy) of pelvic radiation (x/gamma), and had absolutely no side effects until a couple of days after the last dose, when I suddenly developed intolerable abdominal pain and uncontrolla...
by MetastaticEquilibria
Sun Dec 08, 2019 4:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colon Cancer Research Project
Replies: 13
Views: 994

Re: Colon Cancer Research Project

I’m a patient in Japan. Happy to help.
by MetastaticEquilibria
Wed Nov 13, 2019 8:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surgery here, and done.
Replies: 25
Views: 1131

Re: Surgery here, and done.

Good luck with the pump!
by MetastaticEquilibria
Tue Nov 12, 2019 6:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need help metallic taste
Replies: 15
Views: 560

Re: Need help metallic taste

I had first bite. Weird and unpleasant, but didn’t prevent eating. Do be careful of cold sensitivity. I accidentally drank something iced once while on oxaliplatin (wasn’t thinking), and my throat swelled up so bad I couldn’t breathe. It probably didn’t last that long objectively, but it was scary w...
by MetastaticEquilibria
Mon Nov 11, 2019 5:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please allow me to introduce myself
Replies: 28
Views: 3187

Re: Please allow me to introduce myself

Claudine wrote:That's fantastic news ME! Well, the decrease in CEA and improved liver functions, at least. Not so much the pain :(


Thanks!
by MetastaticEquilibria
Sun Nov 10, 2019 12:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Help with bowels
Replies: 65
Views: 5903

Re: Help with bowels

I find magnesium oxide works pretty well and doesn’t usually hurt. It is sold as Magmitt in Japan, or generically as magnesium oxide. Don’t know brand names elsewhere. Fairly gentle yet effective.

When that doesn't work, time to bust out the enemas.
by MetastaticEquilibria
Sun Nov 10, 2019 7:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New Here 37 m stage lV
Replies: 12
Views: 859

Re: New Here 37 m stage lV

Hi Paul, Welcome to the club. Wish none of us were in it. It is great you have a medical professional in the house. Neither my wife nor I are, so it has been a lot of catching up for us. There is also a lot of experience on this board from the patient’s/caregiver’s side, which is great to tap into.
by MetastaticEquilibria
Sat Nov 09, 2019 9:50 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please allow me to introduce myself
Replies: 28
Views: 3187

Re: Please allow me to introduce myself

Update: against all reason and expectation, both CEA and CA19-9 went down. Liver function numbers still slowly improving. Does this Lonsurf stuff actually work, even just a half cycle’s worth? Doctor cast a blind eye to rising-but-still-low platelets, and allowed me to have another half-cycle of Lon...
by MetastaticEquilibria
Sat Nov 09, 2019 4:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Have you been on Vectibix?
Replies: 5
Views: 376

Re: Have you been on Vectibix?

Looks like they only accept US state, D.C., Puerto Rico or US military addresses.
by MetastaticEquilibria
Sun Nov 03, 2019 9:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Freaking out of my mind...CEA climb and specks on lungs
Replies: 35
Views: 2381

Re: Freaking out of my mind...CEA climb and specks on lungs

Do you have access to the raw imaging data? And past raw images? I have noticed that lung spots that turned out to be believed to be infections start out large (~1 cm or more ) and cloudy looking. They don't shrink, but sometimes fade away. Lung mets, on the other hand, start out small (a few mm) a...
by MetastaticEquilibria
Sat Nov 02, 2019 5:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Freaking out of my mind...CEA climb and specks on lungs
Replies: 35
Views: 2381

Re: Freaking out of my mind...CEA climb and specks on lungs

Just keep in mind that if she is on Medicare, they don't give those PET/CTs away. There may be a lifetime limit. Check her Medicare booklet & make those PET scans count. A lifetime limit on PET/CTs? That’s insane! Is that a limit on PETs, PET-CTs, and/or CTs? Or just a limit on PET-CTs? Either ...
by MetastaticEquilibria
Sat Nov 02, 2019 5:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Freaking out of my mind...CEA climb and specks on lungs
Replies: 35
Views: 2381

Re: Freaking out of my mind...CEA climb and specks on lungs

Do you have access to the raw imaging data? And past raw images? I have noticed that lung spots that turned out to be believed to be infections start out large (~1 cm or more ) and cloudy looking. They don't shrink, but sometimes fade away. Lung mets, on the other hand, start out small (a few mm) an...

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