10 Years Today!

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mom_2_3
Posts: 361
Joined: Sat Nov 29, 2008 8:09 pm

10 Years Today!

Postby mom_2_3 » Wed Feb 20, 2019 10:39 am

Officially 10 years NED as of today. I wanted to post my story for those new to the board. When I was first diagnosed all I wanted to read were survival stories. I knew that it didn't necessarily mean I would survive long-term but the possibility and knowing that others had was so important to me. I would say that now I hardly think of cancer and it will be days before the thought crosses my mind. But, not a day goes by that I don't give thanks and gratitude for the life I am so blessed to live...

Here is the story I posted on my FB wall letting friends and family know about my diagnosis in the hope that I would bring awareness to the disease. We didn't tell our children about my illness until this past year so not many of my friends know that I had been ill.

This community was so important to during that first year of illness. I hope that this post gives you hope if you are looking for it, as I was so many years ago....

Amy



"It was during Katie’s caesarean birth 10 years ago today that we first discovered I had colon cancer. It wasn’t until 6 days later on my own birthday that we learned that my cancer had metastasized and I had 5 tumors across my liver. American Cancer Society survival rates for my Stage IV cancer were 8% at 5 years and during an initial consult with a local oncologist I was told that I would probably have 22-24 months to live. Nothing in my life before or since compares to the devastation I felt in that moment when I heard that prognosis.

My husband’s cousin, a gastroenterologist, quickly secured an appointment for me with a different doctor, a renowned oncologist at Memorial Sloan Kettering. This doctor specialized in a special chemotherapy pump called an Hepatic Arterial Infusion pump and her method was achieving longer than average survival rates. She told me that she would treat me and that hopefully I would respond to traditional chemotherapy and be able to have this HAI pump implanted in the future. Four days before Thanksgiving 2008 I started my first systemic (traditional chemo) treatment.

Systemic chemotherapy (especially the platinum-based drug that I was receiving) was no picnic. I suffered the usual side effects from the treatment but asked my doctor to give me the maximum possible dose. After 4 bi-weekly treatments a CT scan confirmed that the chemotherapy was working and my liver tumors were responding to the treatment and I would be eligible for surgery.

Nine days later on February 20, 2009 during a 9-hour surgery I had 12 inches of my colon, 42 lymph nodes, 40% of my liver and my gallbladder removed. Additionally, I had an HAI pump implanted into my abdomen. I had 30 staples up and down my mid-section and a side incision where they had placed my pump. Before the surgery I had been marked by an ostomy nurse where the doctor would place a colostomy if necessitated by surgery. The first memory I have after waking up is feeling my mid-section to find out if I had, in fact, had a colostomy placed. I was relieved to discover that I did not as it would be one less thing I would have to deal with during my recovery.

After my wounds healed I started up my chemotherapy treatments again, alternating between systemic chemo and chemo injections into my HAI pump. This pump, routed to the hepatic artery, allowed for a very concentrated dosage of chemo to profuse the entirety of my liver (which re-generated after 6 weeks). During my 7th chemo treatment I experienced severe anaphylaxis and had cardiac arrest. Electric paddles and 2 doses of epinephrine revived me and I found myself in a cardiac unit for 2 days as doctors monitored my heart to determine whether I had permanent cardiac damage (I did not).

Finally, on November 2, 2009, almost one year to the date of my diagnosis, I completed my last chemotherapy treatment. Throughout the past nine years since then life has been full of blood tests, CT scans, and follow-up MRIs and ultrasounds on suspicious spots here and there. But, through the grace of God and by the hands of three amazing doctors, I have remained in remission from my disease. I have been truly blessed. On October 2, 2018 I finally had my HAI pump removed and heard my surgeon tell me that he considered me cured."
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
10 years NED.

Jolene
Posts: 166
Joined: Wed Jan 23, 2019 10:17 am

Re: 10 Years Today!

Postby Jolene » Wed Feb 20, 2019 11:40 am

Thank you for sharing ! What wonderful news !! Congratulations on the removal of the pump and being NED ! It goes to show the importance of a second opinion ! This board has been my savior on so many matters and new knowledge !
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled

Punky44
Posts: 474
Joined: Mon Oct 01, 2018 4:29 pm

Re: 10 Years Today!

Postby Punky44 » Wed Feb 20, 2019 12:52 pm

Wow, congratulations and thank you for sharing!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4
Latest update: 3/22/21: CEA 3.4

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

Re: 10 Years Today!

Postby radnyc » Wed Feb 20, 2019 1:48 pm

GREAT TO SEE YOU BACK!
10 years, wow! Congrats! You were one of the first on the board whose posts I looked forward to reading, they gave me hope. I'm right behind you, 8.5 years NED. Congrats and enjoy, most agree that 10 years = CURE!
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: 10 Years Today!

Postby mpbser » Wed Feb 20, 2019 2:11 pm

I hope and pray that my husband will get to say this.

Thanks for sharing!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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

Re: 10 Years Today!

Postby CRguy » Wed Feb 20, 2019 3:02 pm

Congrats Amy

Keep living LIFE !!!!

Cheers and best wishes
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

shinny
Posts: 8
Joined: Mon Sep 04, 2017 3:39 am

Re: 10 Years Today!

Postby shinny » Wed Feb 20, 2019 3:29 pm

That's great to read Amy and it will help reassure so many. I wish you continued great health.

Can I ask a question in relation to the HAI pump? Was it delivering chemo all that time or was it left there for a while as a "just in case" scenario?

Nordy1
Posts: 44
Joined: Tue Oct 02, 2018 11:45 pm

Re: 10 Years Today!

Postby Nordy1 » Wed Feb 20, 2019 4:46 pm

Congratulations!!

Thank you so much for sharing this!

Nordy1
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019

User avatar
ginabeewell
Posts: 486
Joined: Wed Oct 24, 2018 10:30 am

Re: 10 Years Today!

Postby ginabeewell » Thu Feb 21, 2019 12:32 am

Wow. As someone who recently had a consult with Dr Kemeny and is now gearing up for an HAI pump placement week of 3/25, this was hugely encouraging to read.

I remember first reading about it and thinking - THIS!

So glad to read stories of those who successfully follows that path and are cured.

My first three oncology consults were a version of "we will try to keep you alive for two years" too: sorry but that's not good enough! If I go, who will clip all the fingernails?!

Congratulations to you. : )
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

stu
Posts: 1461
Joined: Sat Aug 17, 2013 5:46 pm

Re: 10 Years Today!

Postby stu » Thu Feb 21, 2019 3:03 am

Hi ,
You are just ahead of my mum . You used to give me so much inspiration .
So delighted to hear your news. Your family must be overjoyed.

Keep enjoying life ,

Stu
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 .

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: 10 Years Today!

Postby LPL » Thu Feb 21, 2019 10:13 am

Wonderful news Ami :D
Thank you so much for posting your story, giving hope!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

User avatar
Jack&KatiesMommy
Posts: 633
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: 10 Years Today!

Postby Jack&KatiesMommy » Thu Feb 21, 2019 3:00 pm

Thank you Amy. You were one of the first people who gave me hope when I first showed up here 7 1/2 years ago. You gave me so much hope and inspiration back then. We were both Moms with young children...and you told me to look for and keep a list of survival stories for encouragement. I still have that book of survival stories and I am so thankful for your encouragement all of those years ago. Thank you.
Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(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,

FightCRC
Posts: 55
Joined: Fri May 25, 2018 10:39 pm

Re: 10 Years Today!

Postby FightCRC » Thu Feb 21, 2019 6:23 pm

Congrats, Amy! And thank you. Thank you so much. You could have left this all behind you, but have stuck around to share your story, to provide hope for so many of us. Thanks to you and other posters, I learned about HAI for my wife. We would have never known about it otherwise. We are undergoing treatment now. I'm endeavoring to follow your example, and to help spread the word. Take care, all the best to you and your family!

mymom
Posts: 1288
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: 10 Years Today!

Postby mymom » Thu Feb 21, 2019 9:35 pm

Wonderful! dr K is amazing.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: 10 Years Today!

Postby Wonderfullymade » Thu Feb 21, 2019 10:02 pm

Love hearing these stories of hope! Thank you for posting!
Wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1


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