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by Rock_Robster
Thu Nov 28, 2019 11:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lymph node involvement
Replies: 5
Views: 402

Re: Lymph node involvement

I had 1 out of 27 after my rectal surgery. I was stressed about it for a while then he reminded me that the 1 was now sitting on a pathology table somewhere where it can’t hurt anyone :D
by Rock_Robster
Thu Nov 28, 2019 3:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diagnosed while working abroad
Replies: 50
Views: 4105

Re: Diagnosed while working abroad

Hi jts, Thanks for the update - glad to hear the US trip went well! Do you have a surgery date? Sorry to hear about the relationship issues. It really sucks when you already have one major battle on your hands, and you’re forced to fight on another front simultaneously. You need all your mental and ...
by Rock_Robster
Thu Nov 28, 2019 3:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My hair is falling out.
Replies: 27
Views: 1843

Re: My hair is falling out.

What worked for Jesper when his hair thinned out like crazy in the summer was saltwater spray and blowdrying his hair. I know he's a guy so it's not the same, but it definitely gave his hair more volume and texture and hid his scalp. He'd just spray the saltwater in his hair after washing it and th...
by Rock_Robster
Thu Nov 28, 2019 1:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My hair is falling out.
Replies: 27
Views: 1843

Re: My hair is falling out.

I'm going to look for that shampoo and conditioner. Having a tough time emotionally this time around with the hair loss. I know it will grow back and I only have one treatment left, but this still sucks. The right products can make a big difference! And if something small can make this whole thing ...
by Rock_Robster
Tue Nov 26, 2019 10:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My hair is falling out.
Replies: 27
Views: 1843

Re: My hair is falling out.

So my wife starts FOLFIRI on Monday. She saw some thinning with FOLFOX but she was also severely anemic at that time. I guess reading this post it is true that hair loss is a bigger side effect with FOLFIRI than the other? It is, I believe about 50-60% of people will experience ‘some’ hair loss wit...
by Rock_Robster
Mon Nov 25, 2019 8:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA Confusion
Replies: 5
Views: 208

Re: CEA Confusion

Firstly, yes - usually by 1-2 points for me when it was elevated. Different labs, plus things like inflammation, exercise/injury, and smoking can affect it. Secondly, there are at least 2 different test methods in common use - Roche and Bayer-Siemens. These can give slightly different results with d...
by Rock_Robster
Mon Nov 25, 2019 12:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemotherapy options/help
Replies: 14
Views: 622

Re: Chemotherapy options/help

You guys might find this of interest? https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30093-7/fulltext Several jurisdictions are moving to 3 months for adjuvant FOLFOX, I believe. My oncologist was quite happy for me to finish up FOLFOX around round 8-9; said it was up to me if I ...
by Rock_Robster
Sun Nov 24, 2019 11:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA and scans
Replies: 8
Views: 278

Re: CEA and scans

Mine doesn’t test between every chemo round, as he says results bounce around a lot and aren’t clinically relevant that frequently, as you wouldn’t change treatment. In particular he won’t test during the first 4 rounds as he says the results are just likely to cause more anxiety. We tend to test ar...
by Rock_Robster
Sat Nov 23, 2019 2:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: “Near” Complete Clinical Response and what to do next
Replies: 10
Views: 620

Re: “Near” Complete Clinical Response and what to do next

I would definitely want definitive answers. Can they rebiopsy one of the bumps? I opted against watch and wait even though I had a complete clinical response (and it turns out a complete path one also). Permanent colostomy and no regrets. I would much rather ovrrtreat than under treat I tend to agr...
by Rock_Robster
Fri Nov 22, 2019 11:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1st bad scanning... advice please!!
Replies: 52
Views: 2054

Re: 1st bad scanning... advice please!!

Hey Alex, great that you heard back from MSK! Indeed under the circumstances I think these results are both good and probably largely unsurprising. When I got my opinion from them they were also very hesitant to say any on the HAI pump without seeing me in person, and also assessing my response to 4...
by Rock_Robster
Fri Nov 22, 2019 9:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: “Near” Complete Clinical Response and what to do next
Replies: 10
Views: 620

Re: “Near” Complete Clinical Response and what to do next

Hi, my story is very similar (except I was stage IV at diagnosis). I had a ‘complete metabolic response’ to chemoradiation (ie no cancer on PET), but after an MRI and flex sig my surgeon also suspected some cells remained. He mentioned W&W but really didn’t give me the choice. I had the surgery,...
by Rock_Robster
Thu Nov 21, 2019 7:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diarrhoea only at Night
Replies: 18
Views: 572

Re: Diarrhoea only at Night

Something else that helps regulate stools is psyllium. You can buy a jar of plain psyllium husk and just have it in a glass of water. Thank you! I’ll try to buy some soon. Does it taste awful? My husband is already a fussy eater before diagnosis and he’s even worse now :/ Eh, they don’t taste like ...
by Rock_Robster
Thu Nov 21, 2019 5:33 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diarrhoea only at Night
Replies: 18
Views: 572

Re: Diarrhoea only at Night

I have been doing chia seed “porridge’s” and that helps me combat the bad diarrhea. I used to avoid chai seeds before because it would cause constipation then a few weeks ago diarrhea was so bad it occurred to me to try the chia seeds and it has been helping... I just read your signature, I am so s...
by Rock_Robster
Wed Nov 20, 2019 2:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HAI pump or liver resection? Next steps?
Replies: 3
Views: 250

Re: HAI pump or liver resection? Next steps?

The criteria for HAI are usually hospital policy-driven. In some centres this means no metastatic disease outside the liver; others (like MSK & NIH) might be ok with some lung stuff if it’s minor and stable. I’ve not heard of anywhere taking on synchronous peri mets, but please don’t take that o...
by Rock_Robster
Tue Nov 19, 2019 11:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Airline experiences?
Replies: 10
Views: 447

Re: Airline experiences?

I agree with others’ comments that international usually has less flexibility than domestic. I’ve found little flexibility in the past with operators like Cathay and Malaysia. It’s also good to confirm who is actually the flight operator, as often airline partners’ flexibility on codeshare flights i...

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