Pinch me, I must be dreaming.... It was 13 years ago today!!!

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edinaman
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Location: Minnesota

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby edinaman » Sun Jul 23, 2017 12:25 pm

Cptmac,
It is always a pleasure when you come back here and tell your story. It gives so many hope. I don't know if you remember, but we met one time at the MOA when Kathryn organized a survivor's get together. My 13th anniversary is Tuesday, so we have been on the path for the same amount of time. Sometimes it seems like it was only yesterday, and sometimes it seems like a lifetime ago. Again, it's always good to hear from one of the "oldies". Maybe one of these days we will meet again.
Jeff
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.

DarknessEmbraced
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby DarknessEmbraced » Sun Jul 23, 2017 1:02 pm

Congratulations on 13 years! Thanks for sharing your story! I really enjoyed reading it. :)
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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betsydoglover
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Facebook Username: Betsy Lindh Williams
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Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby betsydoglover » Sun Jul 23, 2017 3:06 pm

Congratulations! Happy for you and another example of why people shouldn't listen to "you have X months to live". I was told 5% chance of 5 year survival - here I am at 15. Wishing you all the best.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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horizon
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Joined: Tue Apr 12, 2011 10:10 pm

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby horizon » Sun Jul 23, 2017 5:58 pm

I'm so so happy that you're still doing so well!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby mariane » Mon Jul 24, 2017 2:40 pm

Congratulations,Cptmac! Your post on Cancer compass I found in June 2015 sent me to Dr.K and MSKCC. You gave me 2 years of life already and hope for more. I cannot be thankful enough.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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cptmac
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Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby cptmac » Mon Jul 24, 2017 9:33 pm

tater wrote:thank you for this post it gives a guy like me hope for my young wife who just received the news that it was in her liver this week right before our surgery date. I can now go to bed tonight thinking that it can be us in 13 years. I will enjoy tomorrow and will be on the phone monday getting an appointment to my local cancer institute. I'm trying to find a way to get to MD Anderson.


Keep on Trying Tater. Think about your work, I bet there are different ways of getting things done. You need to find the right one for you.... And don't be afraid to try a clinical trial. We're here to support you...
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

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cptmac
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Facebook Username: Dorothy McGrath

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby cptmac » Mon Jul 24, 2017 9:36 pm

edinaman wrote:Cptmac,
It is always a pleasure when you come back here and tell your story. It gives so many hope. I don't know if you remember, but we met one time at the MOA when Kathryn organized a survivor's get together. My 13th anniversary is Tuesday, so we have been on the path for the same amount of time. Sometimes it seems like it was only yesterday, and sometimes it seems like a lifetime ago. Again, it's always good to hear from one of the "oldies". Maybe one of these days we will meet again.
Jeff


I do remember you Jeff. That was something I really appreciated about Kathryn, she orgainzed soo many get togethers... That I was sad when she passed, because I wasn't sure if the torch would be passed. I really appreciated being able to hang out with you guys before my doc appts. It was so refreshing.... I agree, maybe someday we will meet again.
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

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cptmac
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Facebook Username: Dorothy McGrath

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby cptmac » Mon Jul 24, 2017 9:38 pm

mariane wrote:Congratulations,Cptmac! Your post on Cancer compass I found in June 2015 sent me to Dr.K and MSKCC. You gave me 2 years of life already and hope for more. I cannot be thankful enough.


Mariane.... Thank you so much for sharing that with me.... I've been so busy I almost didn't post on here even.... I've been feeling a bit sad that I'm not doing more to spread awareness about this. Plus feeling a bit sad about another old timer Brownbagger.

But you lifted my spirits... Letting me know that posting, albeit rarely.... because I am rarely on Cancer Compass anymore... less than here... To let me know I can still be of service.

Thanks for brightening my day and giving me the energy to keep on keeping on....

I'm soo glad you're doing well and I look forward to seeing you reach milestone anniversaries...
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

fumaros
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Location: Syracuse, NY
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Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby fumaros » Tue Jul 25, 2017 7:31 am

Congratulations, 13 years! Sounds like it was forever ago, there is always hope.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby mariane » Tue Jul 25, 2017 7:33 pm

Mariane.... Thank you so much for sharing that with me.... I've been so busy I almost didn't post on here even.... I've been feeling a bit sad that I'm not doing more to spread awareness about this. Plus feeling a bit sad about another old timer Brownbagger.

But you lifted my spirits... Letting me know that posting, albeit rarely.... because I am rarely on Cancer Compass anymore... less than here... To let me know I can still be of service.

Thanks for brightening my day and giving me the energy to keep on keeping on....

I'm soo glad you're doing well and I look forward to seeing you reach milestone anniversaries...


Cancer Compass was the first forum which showed up after I searched " liver mets colon cancer survivors". From your post I learnt about HAI pump. Searching about the pump brought me to Colon Talk forum.
I cannot overcome the loss of Brownbagger as well. The longer I stay here, the more people who become close friends depart. It is heart breaking. I exchanged a few emails with Temi as well. She got diagnosed the spring of 2015 as I did at 40. She is gone...

Yesterday I had another appointment with Dr. K and it was the good 1 minute appointment. I passed my expiration date. We will see what future brings but I am grateful for good over 2 years now.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby Rob in PA » Fri Jul 28, 2017 9:24 am

Congrats CPTMAC!!!!!
Very welcomed news for sure....

Keep on keeping on :D
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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ocstacy
Posts: 264
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Facebook Username: stacy

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby ocstacy » Mon Jul 31, 2017 1:29 am

Thank you for letting me share my story with you. I share it every year, because when I was diagnosed, I was looking for any Stage IV's who had survived. Message boards were not what they are today, and I couldn’t find anyone. Now, thanks to this message board, I have found many.

Thank you all for sharing your stories, for helping the newly diagnosed find their way through this maze. And I hope you'll share a smile with me, to celebrate my birthday/cancerversary. I no longer dread getting old, I am thrilled that I am alive!!! I am so blessed to have so many friends who are willing to help me... and celebrate my birthday with me!!! Thanks for letting me share!!!


I am very inspired about the story that you wrote and really gave me hope. I think Dr's aren't really as smart as they think they are. I am so happy that you are cancer free and for 13 years that is so amazing to hear! Last May, I was picking my mom up at her colonoscopy and I get a call on the way to the hospital from the nurse. She said "Your mom is ready to be picked up, but the Dr has to talk to to you when you get here" I didn't think anything of it. My mom was pretty sedated and of course the nurse asks me all these questions like "What was your mom's last colonoscopy?" "How old is she?" Then the drapes closed and there was the GI Dr. showing me the photos of my mother's colon and BAM, he shows me this up close picture of her rectum with red and white and big bumps and said "Your mother has cancer, and it doesn't look good, she will most likely have a colostomy bag" And I couldn't get it in my brain. I was like "Excuse me, are you trying to tell me that my mother has cancer?" He says "Yes, I am very sorry?" I start bawling because we just lost my cousin to ovarian cancer a week prior. I run to the bathroom called my best friend, husband, father (Who i didn't talk to for many years due to my a-hole brother) And let them know what was going on. Apparently my mom could hear me crying to the dr. as her twilight was fading away. She woke up and said "They found something right?" "What was it?" I told her that she must have been dreaming (my mom panicks a lot) So I let her know that they took a biopsy of the polyp and will get back to her in 3 days. I didn't want to tell her and I hadn't processed everything in my head just yet. It was the saddest day of my life. I blamed myself and I felt like it was my fault because my mom watched out daughter since she was 3 months old. What I didn't know was that her gen. dr. had suggested for her to get a colonoscopy 3 years ago, and my mom never did it. She finally admitted that her dr. suggested for her to get one but she declined. I wish that I knew, cause I would have pushed her to go. Instead, she had CT, MRI, Pet scan done but that did not pick it up as colonoscopy can detect cancer better.. they determined that she had Osteoporosis. I do remember always having burning pain in her pelvic and she was in pain. I think she had colorectal cancer for some time, her last colonoscopy was 10 years ago. This was a big wake up call. It was because of me, she had a colonoscopy done because she was having so much pain in rectum and then she said blood. I told her to go immediately. I truly believe that I didn't live so close to her, she would have caught it later. I think it also helped that I took allied health classes and all of her signs and symptoms were all urgent. Thank you for sharing your story with us and Happy Cancerversary!! :mrgreen: I hope that my mother will have an NED too! :D
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: Pinch me, I must be dreaming.... It was 13 years ago today!!!

Postby tater » Mon Jul 31, 2017 5:41 pm

cptmac wrote:
tater wrote:thank you for this post it gives a guy like me hope for my young wife who just received the news that it was in her liver this week right before our surgery date. I can now go to bed tonight thinking that it can be us in 13 years. I will enjoy tomorrow and will be on the phone monday getting an appointment to my local cancer institute. I'm trying to find a way to get to MD Anderson.


Keep on Trying Tater. Think about your work, I bet there are different ways of getting things done. You need to find the right one for you.... And don't be afraid to try a clinical trial. We're here to support you...



Thank you we will have to talk on day. I see you have been at it awhile.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI


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