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by Amarie123
Sun Dec 08, 2019 6:24 pm
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 happy to help as well.
by Amarie123
Tue Dec 03, 2019 5:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Brother In Law's Total Colectomy - 40X a Day on Toilet
Replies: 4
Views: 414

Re: Brother In Law's Total Colectomy - 40X a Day on Toilet

Has he had more tests/scans done to find out what may be going on? If he’s going that many times a day that’s serious and sounds like more than a result of his surgery, given it was so long ago. For the short term Imodium in higher doses can help if he hasn’t tried this already. If it were me, I wou...
by Amarie123
Tue Nov 19, 2019 4:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET CT Small Nodules
Replies: 10
Views: 894

Re: PET CT Small Nodules

It is true that small lung nodules are very common and usually doctors watch them. If no change is seen for some time then I believe they are considered non cancerous. However if significant change is detected (growth or even shrinkage in response to chemo) then there will be more concern.
by Amarie123
Tue Nov 19, 2019 2:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver Progression Only
Replies: 5
Views: 289

Re: Liver Progression Only

I was told it’s mostly due to shared blood vessels between the liver and intestines. So it may go there but not always somewhere else. My metastes was found in my lungs first, which is slower growing than in my liver but it limits treatment options, So if they can keep it confined to the liver that ...
by Amarie123
Mon Nov 18, 2019 7:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My hair is falling out.
Replies: 30
Views: 3299

Re: My hair is falling out.

I’m on chemo for life but have taken oral chemo like Lonsurf since stopping IROX in the summer. I did notice that with irinotecan, my hair thinned out a lot. Same as you, the nurses told me they’d never seen anyone lose it all, however. I never lost so much that it couldn’t be styled and it basicall...
by Amarie123
Wed Nov 13, 2019 4:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1st bad scanning... advice please!!
Replies: 52
Views: 2475

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

I’m sorry you received this news, but the good thing is everything is small. And please don’t be hard on yourself- these things happen. I was on chemo and it happened so there’s no guarantee either way. After radiation on my larger liver tumor, 3 new ones showed up in my most recent scan and the lu...
by Amarie123
Tue Nov 12, 2019 6:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 1st bad scanning... advice please!!
Replies: 52
Views: 2475

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

I’m sorry you received this news, but the good thing is everything is small. And please don’t be hard on yourself- these things happen. I was on chemo and it happened so there’s no guarantee either way. After radiation on my larger liver tumor, 3 new ones showed up in my most recent scan and the lun...
by Amarie123
Sat Nov 09, 2019 12:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Yoga for “women’s cancer” (ugh)
Replies: 3
Views: 303

Re: Yoga for “women’s cancer” (ugh)

:lol: I’ve actually seen things like this and it’s one of my biggest pet peeves!! Seriously?!?
by Amarie123
Sat Nov 09, 2019 9:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My recent significant CEA jump.
Replies: 26
Views: 2019

Re: My recent significant CEA jump.

CEA can apparently spike for a number of non cancer related reasons. A friend of mine has been cancer free for 7 years but her CEA was always up and down. She has some lung infections due to damage from radiation, which her docs at Dana Farber think could be the cause. They have stopped monitoring h...
by Amarie123
Sat Nov 09, 2019 9:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My recent significant CEA jump.
Replies: 26
Views: 2019

Re: My recent significant CEA jump.

CEA can apparently spike for a number of non cancer related reasons. A friend of mine has been cancer free for 7 years but her CEA was always up and down. She gets recurrent bronchial and sinus infections which her docs at Dana Farber think could be the cause. They have stopped monitoring her CEA be...
by Amarie123
Thu Oct 31, 2019 8:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: On clinical trails
Replies: 1
Views: 240

Re: On clinical trails

I have stage 4 with mets to lungs/ liver and participated in a clinical trial in late July - early August. The trial consisted of two weeks of TAS-102 (brand name Lonsurf) combined with SBRT photon radiation therapy. I’ve only had one scan but so far the result is positive. The radiation was focused...
by Amarie123
Sat Oct 05, 2019 7:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Got post-op staging
Replies: 20
Views: 1748

Re: Got post-op staging

Just wanted to pop in to say that when you see N2 (or N2a), it means that there where between 4-6 lymph nodes effected, so this looks correct. 7 or more lymph nodes would, I believe be characterized as N2b.
by Amarie123
Fri Oct 04, 2019 6:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1464

Re: Lonsurf- anyone currently taking?

Any time! I hope your husband has some success with it!
by Amarie123
Fri Oct 04, 2019 3:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1464

Re: Lonsurf- anyone currently taking?

A Lonsurf cycle is about 28 days, give or take.
5 days on, 2 days off, 5 days on, 2 weeks off. Bloodwork is then checked and if WBC count is ok, the cycle starts again.
by Amarie123
Fri Oct 04, 2019 2:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Lonsurf- anyone currently taking?
Replies: 14
Views: 1464

Re: Lonsurf- anyone currently taking?

I just finished my second round of Lonsurf two weeks ago and start the third one soon. So far it’s been fine, with the only side effects being fatigue, minor diarrhea and mouth sores. The mouth sores were tough but I was given a prescription which seemed to help. They will do scans after the third c...

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