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by Spazzyjanet
Thu Nov 08, 2018 6:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STAGE IV NED 6 1/2 years and 10 years out from dx
Replies: 12
Views: 2763

Re: STAGE IV NED 6 1/2 years and 10 years out from dx

You are not the first person to tell me that I am thinking too far into the future. I wish that it were so easy for me to do that. As long as someone can help me feel that a decision I make now won't mean that I am limiting my options for the future I will try very hard to learn how to do that.
by Spazzyjanet
Thu Nov 08, 2018 12:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STAGE IV NED 6 1/2 years and 10 years out from dx
Replies: 12
Views: 2763

Re: STAGE IV NED 6 1/2 years and 10 years out from dx

Wow. Your post gives me a lot to think about. If those numbers are true, then the stats for liver resection are higher/ more positive than the stats for those with an HAI pump. So here's a question. Yesterday a surgeon told me that a partial resection and HAI pump would put my 5-year survival rate b...
by Spazzyjanet
Thu Nov 08, 2018 6:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS G12V and Avastin
Replies: 9
Views: 1711

Re: KRAS G12V and Avastin

I always ask the human doctor. I just wish that the human doctor would tell me WHY something I bring up does or does not apply instead of just dismissing me outright. I am data driven and explanations are important to me, but sometimes I feel like asking for those can be a tall order.
by Spazzyjanet
Thu Nov 08, 2018 5:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need prayers
Replies: 30
Views: 4419

Re: Need prayers

Sending you vibes for a positive outcome.
by Spazzyjanet
Thu Nov 08, 2018 5:01 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I got second opinions- HAI pump, HIPEC, and now decisions
Replies: 4
Views: 1357

I got second opinions- HAI pump, HIPEC, and now decisions

So I am back from two days of second opinions from the James in Columbus OH (ranked #20 nationally). I am locally receiving treatment from a center in Dayton. As they say, you get what you ask for. Now I have some decisions to make- especially with regard to surgical options. Liver mets: My highly r...
by Spazzyjanet
Wed Nov 07, 2018 6:17 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS G12V and Avastin
Replies: 9
Views: 1711

Re: KRAS G12V and Avastin

Thank you for your replies. This had me up in the middle of the night so I tried a different search methodology. Instead of looking for G12V + Avastin, which gets me to a study titled "G12V and G12A KRAS mutations are associated with poor outcome in patients with metastatic colorectal cancer tr...
by Spazzyjanet
Tue Nov 06, 2018 6:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: KRAS G12V and Avastin
Replies: 9
Views: 1711

KRAS G12V and Avastin

I met with a medical oncologist today who is considered to be a specialist in genomic testing and research. He told me today that a KRAS G12V mutation does not rule out Avastin. Yet a quick Google search shows qualified studies that say differently. What do you think? The Onc can't be wrong, can he?...
by Spazzyjanet
Thu Nov 01, 2018 2:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Genome testing is back and looks really bad
Replies: 10
Views: 1553

Re: Genome testing is back and looks really bad

I'm a fairly intelligent person, but honestly this exhausts me. For what it's worth, I have my own genetic tests and have run those through studies and my personal genes turn up bad for Avastin and Cetuximab as well. Because of that, I sort of anticipated this coming but still had hope since my Onco...
by Spazzyjanet
Thu Nov 01, 2018 5:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Genome testing is back and looks really bad
Replies: 10
Views: 1553

Re: Genome testing is back and looks really bad

I'm still trying to fathom HOW I have so many mutations when I know no-one else in my family that has had CRC. As far as Cancer, my uncle had Prostate cancer, his daughter has low-stage melanoma but that is it. Heck, my mother was an alcoholic, anorexic and bulimic, which drove osteoporosis anaemia ...
by Spazzyjanet
Wed Oct 31, 2018 8:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Genome testing is back and looks really bad
Replies: 10
Views: 1553

Genome testing is back and looks really bad

KRAS G12V NRAS Wild type MS-Stable Tumor Mutational Burden 5 Muts (low) APC R302 APC E1408 CCDN amplification ERBB amplification TP53 R273C VEGFA amplification Some of these are very rare. The VEGFA amplification is present in only 3 percent of CRC cases and is associated with higher stage, tumor gr...
by Spazzyjanet
Tue Oct 30, 2018 11:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HOPE officially three years clean
Replies: 11
Views: 1841

Re: HOPE officially three years clean

Thank you for sharing. What is the typical scanning and monitoring schedule after reaching NED? I read that most CRC recurrences are in the second year after diagnosis, so logic would follow that scanning should be pretty frequent up until the 2-year mark at least, correct?
by Spazzyjanet
Fri Oct 26, 2018 6:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hi, I'm new to the club
Replies: 14
Views: 2849

Re: Hi, I'm new to the club

Welcome to the club. I am glad that you are getting a lot of opinions and using resources available. I am hoping that you can get to a path to NED.
by Spazzyjanet
Fri Oct 26, 2018 6:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 to NED- Please tell us
Replies: 54
Views: 14611

Re: Stage 4 to NED- Please tell us

Welcome to the club. I hope that that the Mayo Clinic has a plan for you. Please check in with us to let us know how things go. I got admitted to the hospital and had a resection due to Colon blockage (I actually went to an ER with what I thought was a stomach bug). I still didn't find out that Ihad...
by Spazzyjanet
Tue Oct 23, 2018 4:59 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Tell me any Genome testing
Replies: 3
Views: 1001

Re: Tell me any Genome testing

I guess I will talk to my oncologist about it tomorrow, and hope that his eyes don't roll too far up into his head like they have in the past when I reference my genetic testing.

We'll also see what his tests say. Honestly, with liver mets I am terrified about my prognosis if we can't use Avastin.
by Spazzyjanet
Sun Oct 21, 2018 6:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quality of life on Folfox and others
Replies: 20
Views: 6407

Re: Quality of life on Folfox and others

I have just finished my first round of Oxy+ 5FU. Got unhooked Friday at lunch. No diarrhea, but actually was constipated all day yesterday. Is that normal? I expected goo and got the opposite? Or is the goo still on it's way?

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