There is no way to say thank you

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There is no way to say thank you

Postby sandyr » Sat Dec 06, 2014 9:09 pm

It has been a long time since I posted on the website. Not since those early awful days of diagnosis when everything was surrounded in fear and darkness. All of the things I was too scared to say out loud to my husband, I was able to say to this audience of amazing, knowledgeable, "in the trenches with me" people who embody this chat room. You are all extraordinary and my gratitude to you goes beyond bounds. You were there when it was all so new...when I tried to figure out what the CT scans were really saying...what those hazy spots on my lungs really meant...and did signet ring cell really mean that I had no chance.

So here I am today, 6 years later, and the BC Cancer Agency (filled with my angels and saviours) have said that they never want to see me again. We are done. I have graduated. The battle is over and I can go back to my life and to my children. And I am overwhelmed, emotional, elated and exhausted. But most of all, grateful.

My boys were so young when this journey started - and 9 and 6. And their energy and ability to force me to get up and keep going because someone had a game, a practice, a school recital, some crazy thing that needed me to be present...that is what kept me going. They didn't stop, so neither could I. And we got through it together, even though we never told them what was really going on because it felt too big, too scary. We couldn't even cope with it as adults; how on earth could they cope with it as children? We finally told them last year and it still cracks me up. Their reaction was so straight forward: "Wow - Mom! Really? Are you okay? Will it come back? Can we order more hotwings?" I love them for their very straight forward, black and white approach to the world. Now they are 15 and almost 13 - amazing, beautiful, notably more hairy children. And they make my heart swell every time I see them. And I know how lucky I am.

But I come back to this group. You are extraordinary. The support I felt from so many through my journey was amazing and humbling. So many people were incredible in their willingness to reach out to me, a total stranger, to help hold my hand and help me to just breathe - all while fighting their own battles. So many that I miss and am saddened to hear of their passing. I feel their presence and am so grateful to have had them as part of my journey. Words don't do it justice.

I stand here today as a stage 3 signet ring cell SURVIVOR (!!!!) and say thank you. Thank you, thank you, thank you. You are the most amazing, powerful, supportive group of people who embody this board and what it stands for. I owe you more than I could ever express.

With gratitude beyond words,
Age 48
Diagnosed at age 42 with stage 3, signet ring cancer
Surgery, radiation, chemo
And it is all done

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Re: There is no way to say thank you

Postby Lee » Sat Dec 06, 2014 9:53 pm

YES there are some amazing people here and this site is a wonderful source of information. I agree and thank you for your kind words.

And CONGRATULATIONS to you on reaching 6 years. That is a major milestone. May you always resides in NEDville.

rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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Re: There is no way to say thank you

Postby horizon » Sun Dec 07, 2014 10:15 am

It was great reading this. Congrats.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

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Re: There is no way to say thank you

Postby KWT » Sun Dec 07, 2014 2:49 pm

That's good news and great to read. Keep up the good work. Kicking cancers ass that is. :D

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Re: There is no way to say thank you

Postby canadiandaughter » Sun Dec 07, 2014 3:38 pm

That is awesome news, congratulations, celebrate!!!! I agree, this board is amazing, so glad that you found it back when you really needed it!
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

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Re: There is no way to say thank you

Postby jsw7302013 » Sun Dec 07, 2014 3:50 pm

I just joined the forum & I'm so happy to hear of your 6 year signet ring cell colon cancer survival!
There is so little information out there about survivors. The research usually indicates poor prognosis.
I was diagnosed in July 2013 @ age 58 & had resection Aug. 2013. No additional treatment recommended.
Stage IIb, microsatellite instability & poorly differentiated.
Planning on living a long, cancer free life. :D
60 year old female
Dx: signet ring cell tumor in cecum, stage IIb,
no lymph involvement, Lynch negative
no perineural invasion, microsatellite instabilitiy
right hemicolectomy with resection 8/13
no follow up treatment

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Re: There is no way to say thank you

Postby CRguy » Sun Dec 07, 2014 9:47 pm

There is no way to say thank you

You just did in my estimation !

One of the most important "messages" this forum sends to people is :
I am one of us/you
I have BTDT with you/us
here I am now ... with you/us

WE are ONE.... you and I.

By coming back to share and engage with others on the same Journey
you, and the others who keep coming back .. say Thank You ..every time
JUST by being here with us all as we continue on our own Journeys


CRguy .... ALWAYS on some kind of Journey

justin case
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Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: There is no way to say thank you

Postby justin case » Sun Dec 07, 2014 10:15 pm

Today my wife got stuck on the other side of town. I tried calling her cell phone, to no avail. I knew she was trying to help a pregnant 16 year old girl in distress. I assumed she was disregarding my calls to avoid any concern I might have. Yes, I finally got the call she locked her keys in the car, in one of the worst neighborhoods in Houston! That was after a kind gentleman used a jimmy to unlock her car door, and give her access to the phone. Everyday is a reminder that something always lurks around a corner, and a Thank You could benefit people not yet encountered.
Thank You,
7/11 diagnosed Stage 2 colon and rectal cancer
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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Re: There is no way to say thank you

Postby orcasres » Sun Dec 07, 2014 11:35 pm

What wonderful news. Have a good rest of your life. Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

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Re: There is no way to say thank you

Postby Sharona » Mon Dec 08, 2014 4:28 am

Thanks for sharing you news with us! It is extra special because it ones at such a beautiful time of the year. You will always be one with us because of what we have all been though. Am celebrating with you!
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
FOLFIRI, FOLFIRI, avastin, Zaltrap
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15

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Re: There is no way to say thank you

Postby mfox50 » Thu Jan 08, 2015 12:20 am

Hi Sandy,

So happy for you! I'm new to Colon Club... I've found it very hard to find information since SRC is so rare, and your post gave me such hope. My husband was diagnosed recently with stage IVb signet ring colon cancer. His tumor was just below the cecum with 4 positive lymph nodes and seeding throughout the peritoneum. He's currently in the midst of 6 rounds of FOLFOX after which we hope he will have de-bulking surgery and HIPEC. Right now at least he is a good candidate as he has no other metastasis, so we hope that continues so that we can gain more time with the aggressive surgery. He is 49 and we have 3 boys... aged 9, almost 13 and 15, so he is determined to get as much time with them as possible.
Would love to hear any advice you may have for a newbie.

thank you!
Wife to Neal DX age 49 11/14/14
Stage IV signet cell CC - peritoneal mets & 4/10 nodes
right hemicolectomy 11/19/14
6 rounds FOLFOX 12/10/14
CTR & HIPEC 4/16/15
6 rounds FOLFOX w/avastin

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Re: There is no way to say thank you

Postby hopeful » Thu Jan 08, 2015 3:10 am

Sandy, congratulation on making it through the trenches! 6 years!
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

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Joined: Mon Dec 08, 2014 7:39 am
Location: Massachusetts

Re: There is no way to say thank you

Postby mrcytech » Thu Jan 08, 2015 1:51 pm

Sandy, congrats on an remarkable 6 year achievement!!! This is awesome news, and inspiration for all of us.... Huge!!! :D
Dx 12/12 Stage 3B sigmoid crc T3N1M0
2/13 resection w/ temp Iliost, port insert. Reversal 5/13.
6/13-12/13 Folfox 12 sessions. Oxi stopped @ session 4.
9/14 CT shows 1.2CM nodule on upper lobe of left lung.
3/15 wedge resection left lung (stage 1A lung cancer) no chemo.
9/16 CT/PET shows node activity (SUV 10.6), CEA extremely elevated. Mets from colon. Upgraded to stage 4.
11/16-4/17 Begin Folfiri w/Avastin 8 sessions.
4/19-9/19 endobronchial activity lung mets.
1/20 Stivarga (palliative).

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