Call on Congress 2018 - Inspiring and Uplifting Experience!

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Call on Congress 2018 - Inspiring and Uplifting Experience!

Postby Shana » Mon Mar 26, 2018 2:22 pm

I feel extremely lucky today because I have so many warm memories from last week. It was such an awesome experience for me to participate in ConC 2018! Thank you O Stoma Mia for encouraging me to attend!

The stories shared by my fellow advocates were heartfelt and inspiring. I felt an immediate connection to survivors and their families who have walked this walk. I was shocked and saddened by how young people are being diagnosed.... college students, new moms, athletes... people from all walks of life. I can't make any sense of why this disease is hitting the under 50 crowd so hard!

We walked the halls of congress and senate last Tuesday and met with our representatives and their aides to inform and educate about CRC. We asked them for their support and they came through in a BIG way! This paves the way for more research and will lead to new treatments to help us all with continued survival and an eventual cure!

To quote my fellow advocate, Stacy Hurt: "President Trump announced that he has signed the $1.3 trillion spending bill that passed Congress last night. In addition, the omnibus bill passed by the Senate and House earmarks $300 million for the Cancer Moonshot initiative. This is an increase in funding for the National Institutes of Health (NIH), with significant increases to several federal health agencies in FY18. The passing of this bill means we have the funds to support researchers and ultimately accelerate medical progress, public health, and scientific innovation
GREAT JOB ADVOCATES! We applaud our partners like ACS CAN, OVAC, Research!America, and so many groups that rallied to support research funding!"

I hope other forum members will consider joining us next year. It lifted my spirits considerably being with these amazing people who have become friends. I have learned "NO ONE FIGHTS ALONE" Colon Club forum has helped me so much and I hope to give back with continued advocacy fighting this monster disease.

Call on Congress advocates are passionate, intelligent, funny and really know how to party! Living life to the fullest in spite of everything! :D

A special thank you to four special women who I met. They are strong and passionate fighters! Trish Lannon, Leighann Sturgin, Diana Sloan and Maia Walker.
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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CRguy
Posts: 10285
Joined: Sun Feb 10, 2008 6:00 pm

Re: Call on Congress 2018 - Inspiring and Uplifting Experience!

Postby CRguy » Mon Mar 26, 2018 4:06 pm

Shana wrote:A special thank you to four special women who I met. They are strong and passionate fighters! Trish Lannon, Leighann Sturgin, Diana Sloan and Maia Walker.

That is almost an understatement there Shana !!!!!
along with you my friend ... the CTalk forum was VERY WELL represented by
FIVE special, strong and passionate fighters !!!!

WORD

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Call on Congress 2018 - Inspiring and Uplifting Experience!

Postby Shana » Mon Mar 26, 2018 8:32 pm

CRguy wrote:
Shana wrote:A special thank you to four special women who I met. They are strong and passionate fighters! Trish Lannon, Leighann Sturgin, Diana Sloan and Maia Walker.

That is almost an understatement there Shana !!!!!
along with you my friend ... the CTalk forum was VERY WELL represented by
FIVE special, strong and passionate fighters !!!!

WORD

Cheers
CRguy


Thank you so much CRguy! I really appreciate your kind words.

This fight is still so new for me that I am in awe by what others have already gone through. I plan to continue to fight for myself and for everyone else with this crappy disease!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Call on Congress 2018 - Inspiring and Uplifting Experience!

Postby Robino1 » Mon Mar 26, 2018 9:01 pm

Shana, YOU are awesome! You and the others that were there with you, totally ROCK!

You got the power :D
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

User avatar
Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Call on Congress 2018 - Inspiring and Uplifting Experience!

Postby Shana » Wed Mar 28, 2018 12:14 pm

Robino1 wrote:Shana, YOU are awesome! You and the others that were there with you, totally ROCK!

You got the power :D


Thanks Robin!

I hope you consider attending next year! I think it would really be a great experience and you'll be amazed at the energy from all of the survivors! I told someone that I didn't consider myself a survivor because I am not NED and I was still under treatment and he said "so am I" and added that everyday we are alive means we are survivors!

I definitely prefer the term Survivor vs Victim!! :)
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...


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