10 Years and Counting

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10 Years and Counting

Postby SkiFletch » Thu Nov 14, 2019 12:05 am

Ten years ago, I called this place home. Ten years ago, a GI doc told me I had cancer and that very night, I found this place. I spent hours lurking and scouring threads and information here from my hospital bed that night, looking for information and stories. And found them I did. Weeks went by before I gained the courage to actually join and begin engaging in the conversations here. Shortly thereafter, learning the true extent of my diagnosis of Stage IV with peritoneal metastasis I read another story by an old member named ScottG. He too had nearly my same diagnosis and he had survived for 10 years since hearing those fateful words. I made a promise to myself right then and there, a promise I return today to fulfill. I told myself that if I ever survived cancer that long, I would make sure to share that here.

You see, ScottG's simple words gave me hope. His were proof that someone could in fact survive. They helped prevent me from slipping into despair learning just how dire things were. Liberated from that despair, I focused on the moment and learning and helping others. For a couple years I went through the ringer of treatments many of you know. Surgery, port, chemo, complications (cause it's never smooth sailing), and finally HIPEC. Along the way members here who had gone through the same thing helped me learn and gave me strength that I could do these things too, much that they truly did plain suck. I paid it forward for a long while, helping other new members and trying to answer their fears through common experience.

Years went by and I was blessed with success every step of the way. With each milestone passed, the memories did indeed fade. The pain and struggle of treatment gave way to the distraught of survivors' guilt. Why me? Why do I get to live when so many do not? Months and years passed and the mundane of life starts to even overwhelm the survivors' guilt. It never completely goes away but morphs from guilt into wonder. Years went by and my very NEED to participate here waned as well.

I'm beyond blessed to say that I've been able to leave Colon Cancer behind and forge ahead in life. Words can't describe how special it is to still be here, 10 years later, still cancer free. And today, I remember everyone whom didn't make it, many of them good friends. Too many of them lost. Yet, here I stand and remain. A proof that ScottG wasn't the only one whom could beat it. Longterm cancer-free survival is indeed possible. And if you need a bit of a reassurance today, in the midst of treatment or despair, I'm here to provide it.
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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Re: 10 Years and Counting

Postby CRguy » Thu Nov 14, 2019 12:38 am

Beautiful message of caring, hope and friendship Fletch.

Thank you for paying it forward by coming back to the forum to share.
It is good to hear from you again.

Love Peace and Harmony buddy

On the Journey
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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Re: 10 Years and Counting

Postby stu » Thu Nov 14, 2019 2:47 am

So, so good to hear from you . You are one of the forum members that stand out for me . I often wonder how you and your family are getting on . I remember vividly some of the great characters that were around here ten years ago . Happy and saddened at the same time .

I continue to use your story to bring hope to others and am delighted to hear it’s all still good .

I must have arrived here at a similar time frame to you as my mum made it by the ten year mark too . Such a strong message of hope to others starting out on this horrible journey but I sincerely hope they read this and it gives them courage and strength for today .

That baby of yours must be getting tall by now . How it’s all going well .

Take care ,

supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Re: 10 Years and Counting

Postby Siti » Thu Nov 14, 2019 3:58 am

Thank you for your beautiful message. Exactly what I needed to wake up to, since I was starting to get lost in negative thoughts again. Please don’t mention survivors’ guilt because your message is a stronger one, hope. I made the same promise to come back here after 10 years to report that my husband is alive and well in a decade :) You deserve to enjoy life to the fullest.. Take care.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

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Re: 10 Years and Counting

Postby horizon » Thu Nov 14, 2019 10:11 am

I understand where you are coming from with the survivor's guilt but I hope that it passes. Because you were a survivor you were able to help a lot of people. I don't even know if you remember me but you're one of the people I really looked up to you as a mentor when I was going through my treatment. It makes me really happy to know that you're still doing well.
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: 10 Years and Counting

Postby Deb m » Thu Nov 14, 2019 10:17 am

So happy for you.

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Re: 10 Years and Counting

Postby Jack&KatiesMommy » Thu Nov 14, 2019 11:24 am

Thank you, Fletch. I remember you so well and hoped that you were doing well. Thank you for the inspiration.
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

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Re: 10 Years and Counting

Postby Claudine » Thu Nov 14, 2019 11:30 am

I am grateful for those who've "made it" and come back to let those who're deep in it now know that there's hope!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/20: nothing to report

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Re: 10 Years and Counting

Postby AlexandraZ » Thu Nov 14, 2019 2:14 pm

Thanks so much for your inspiring post! I am one of those who needed it today. :D Well done, and I hope you don't feel too guilty. You are giving hope to people who really need it!! Thanks again.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

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Re: 10 Years and Counting

Postby Phuong » Thu Nov 14, 2019 4:51 pm

Well this made me cry. We’ve spent a lot of time here. The “Old Timers.” So happy for you Fletch, and for all you have in your life. Celebrate it all!
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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Re: 10 Years and Counting

Postby AmyG » Thu Nov 14, 2019 5:06 pm

If you can do it, I can too. See you in another 10 years? :D
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

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Re: 10 Years and Counting

Postby stu » Thu Nov 14, 2019 6:17 pm

Oh Amy you do make me laugh and I really think we will be seeing you too !
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Posts: 1567
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: 10 Years and Counting

Postby janklo » Thu Nov 14, 2019 6:38 pm

Thanks for the update! So glad you are doing well! Life goes on, I have two little granddaughters now and rarely check this forum, but I am so happy to hear your update on life! Yay! You are an inspiration Michael. :)
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

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Re: 10 Years and Counting

Postby edinaman » Fri Nov 15, 2019 9:57 am

Hi SkiFletch. Thank you for your update. I'm sure like many other "oldies" we think of each other and wonder how they are doing. I am so glad that things are going well-that made my day! Your message gives hope to so many that are going through the battle. Continued good luck.
Went in for surgery for a cyst on my bladder, and they found colon cancer growing on the outside of the colon. Got to have two surgeries at the same time! Stage 3, one node involved.

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Re: 10 Years and Counting

Postby DarknessEmbraced » Fri Nov 15, 2019 10:12 am

That's wonderful! :) Congratulations! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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