Stage IV Suvivor Celebrates Third Anniversary of Surgery

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AnonSurvivor
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Joined: Fri Oct 16, 2015 12:04 pm

Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby AnonSurvivor » Fri Oct 16, 2015 11:51 pm

I post the following with the intent to provide both a survivor's summary narrative and encouragement to my fellow colon cancer patients. I was dealt a rough hand but managed to make the best of it. If I could do it, others can too.

On October 4, 2012, I was diagnosed with metastatic colon cancer. I was 41 at the time, a husband and a father of three (I remain a husband and a father of three). My symptoms were (i) unexplained fatigue and weight gain during the months leading up to the diagnosis and (ii) for the 30 days prior to the consult a steady, localized pain in my abdomen about two inches above my right hip bone. The pain, as you might have surmised, turned out to be a tumor. The CT scan indicated a lesion on my liver. I had a friend at Mass General and decided to pursue the initial fight there. I had another CT scan and a PET scan. Several days later, Dr. David Berger resected the about 12 inches of my colon at the cecum, some of my small intestine, my entire gall bladder (it was "in the way") and half of my liver. In retrospect, he almost certainly saved my life that day. The pathology report was discouraging: pT4aN2bM1a and BRAF mutation. Pre-surgery CEA was 33.2 Cancer was present in 27 out of 32 lymph nodes examined.

Yale-New Haven hospital was closer to home, and that's where I had chemo. Dr. Howard Hochster oversaw my treatment, and continues to monitor me. I recovered very quickly from surgery. I was in good health before surgery, but I attribute the speed of my recovery to an aggressive regimen of walking -- 10+ miles per day after the first couple of weeks. YNH installed a dual port-a-cath on the right side of my chest, and my first chemo infusion was four weeks after surgery. I had a total of 12 cycles of Folfox + avastin. I wore a flurouracil pack for 46 hours each cycle. My CEA was 11 and 12 after surgery and immediately dropped into the 6s. By the end of the 12 cycles, though, CEA had climbed back to 13.8. By then, too, the oxaliplatin was causing neuropathy. In spite of the CEA moves, CT scans were all negative apart from suspicious scar tissue on my liver at the point of incision. For these reasons among others, Dr. Hochster recommended continuing chemo, but without oxaliplatin. I have a policy of following Dr. Hochster's recommendations, so I had 10 more cycles of flurouracil + avastin. The CT scans continued to be negative. My CEA dropped back into the single digits over time, back down to around 6. Late in August 2013 at my scheduled infusion -- as usual I had awoken early to shave my chest around the port -- Dr. Hochster told me I looked good and sent me home without the poison. I was prepared to eat the chemo indefinitely, and this news was a delightful surprise.

In December 2013, just a few months after the end of chemo, my CEA spiked into the 17s. The CT scans still continued to be negative. After another couple of months, my CEA began to drop and drop steadly. It's now in the 2s, and my port finally came out in a couple of months ago, in August (2015). I'm still on a three month schedule of CT scans, but I am convinced that the cancer will not return.

Since surgery, I have taken 325mg of aspirin daily. I also consumed a significant amount of green tea -- using high quality loose tea leaves and steeping for 10 minutes minimum -- and turmeric. I avoided sugar and gluten. I ate organic foods, including large amounts of blueberries and non-wheat grains. Starting after about six cycles of chemo, I fasted for 48 hours before each infusion.

I maintained a positive attitude throughout and had the constant support of my wife, my parents, my brother, my in-laws, my friends and my co-workers. I never doubted that I would survive.

I never stopped working full time.

Please pm me with any questions.

Bostonzj
Posts: 38
Joined: Sun Dec 28, 2014 10:38 am
Facebook Username: Lili

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby Bostonzj » Sat Oct 17, 2015 8:18 am

Very inspiring! Wish you stay NED forever!
female, Dx @ 34 yo,mom to 3 yo daughter
stage 1 colon cancer
surgery on 07/30/2014
CEA <0.5 (after surger), no cea checked pre-op
no chemo needed
pray to god every day!
CT scan :08/2014 clean, 12/2014 clean,11/2015 clean, 11/2016 clean
NED forever!!!!

CLD
Posts: 206
Joined: Fri Mar 27, 2015 7:16 pm

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby CLD » Sat Oct 17, 2015 8:24 am

Thank you for joining and taking the time to share your inspiring story! Wishing you a long life of continued health!
Wife to DH/ Father of 6 (age 42 at dx) diagnosed Jan 2015 stage IIIC
Tumor deposit in mesentery 13/24 lymph nodes +
CEA at dx: 5
MSS
Low Grade/Mod. Diff.
FOLFOX 6 months
N.E.D until June 2018
PET Scan 6/18
Biopsy confirms cancer in 3 Paraaortic lymph nodes
Folfiri + Avastin (6tx) and Xeloda during radiation
Cancer all over both lungs dx Jan 2019
FOLFIRI +AVASTIN presently

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby Lee » Sat Oct 17, 2015 4:40 pm

Congratulation on hitting a major milestone :D

May you ALWAYS reside in NEDville.

Thank you for posting your success story.

Lee
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!

DixieBelle
Posts: 8
Joined: Wed Jun 10, 2015 12:50 pm
Location: North Carolina

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby DixieBelle » Tue Oct 20, 2015 10:11 am

Is your BRAF gene mutation the V600E mutation?

I have my 6 months scan on Thursday (my 1st since my initial diagnosis and surgery in April). Two oncologists told me that chemo was not an option at that time, but one did say new developments look promising if my colon cancer does metastasize.

Your post is the most promising thing I have seen since my diagnosis.
Debbie, 66 years old
diag 4/4/15, colon cancer
Fist sized tumor and
15" of colon removed 4/7
BRAF V600E Mutation, MSI High
Stage IIA, T3N0M0
0/33 Lymph Nodes
No treatment
3 years NED

AnonSurvivor
Posts: 18
Joined: Fri Oct 16, 2015 12:04 pm

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby AnonSurvivor » Thu Oct 22, 2015 8:09 am

Debbie,

Yes, BRAF V600E. My whole Foundation Report is (was!): BRAF V600E, PIK3CA H1047L, APC R499*, E1554*, PTPRD S1845sf*2, CDH1 E806*, TP53 R213*

I disagree that chemo is "not an option," rather BRAF mutations often resist it. Folfox + Avastin crushed whatever was left of mine after surgery. That said, I was VERY strict about diet, too -- no sugar, no gluten, much green tea (high quality loose leaf, steeped for 10 minutes!) and 325mg of aspirin before bed.

If you are able, I strongly recommend consulting with Dr. Howard Hochster at Yale.

Stay positive and resolute!

A.S.

AnonSurvivor
Posts: 18
Joined: Fri Oct 16, 2015 12:04 pm

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby AnonSurvivor » Tue Oct 17, 2017 10:27 am

Just an update here: I just celebrated my fifth anniversary of NED.

My situation was ugly, but here I am. If I can do it, so can you.

Advice -- above all, stay positive and resolute. Never give up.

Best regards.

A.S.

plastikos
Posts: 351
Joined: Wed Jan 14, 2015 6:09 am

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby plastikos » Tue Oct 17, 2017 10:43 am

First time to see this thread. First of all congrats on everything. As you can see from my sig we were basically in same boat (right sides lesion with liver mets). Bit since my surgery I have had 2 recurrences. I have never had Avastin (I wish I had the first time) but we decided on Erbitux since my tumor was Kras wild type and at that time the evidence suggested Erbitux would be better. I also didn’t follow your diet but am considering it now. Took 80 mg aspirin once a day for a time but stopped it when I had another surgery and never startes it again. It’s frustrating trying to find one’s own personal “magic bullet”. You are very lucky you found yours. Hoping this latest treatment I am on is mine.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

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

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby mariane » Tue Oct 17, 2017 8:52 pm

Congratulations!!!! I am so happy!!!
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!

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

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby Shana » Wed Oct 18, 2017 1:58 am

AnonSurvivor wrote:Just an update here: I just celebrated my fifth anniversary of NED.

My situation was ugly, but here I am. If I can do it, so can you.

Advice -- above all, stay positive and resolute. Never give up.

Best regards.

A.S.



Awesome, such great encouraging words that you are sharing1 Thank you and wishing you good health always!
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...

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

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby mariane » Wed Oct 18, 2017 9:22 pm

Congratulations!!! Thank you for letting us know!!! Many, many good, clear years!
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!

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby DarknessEmbraced » Thu Oct 19, 2017 6:14 pm

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! :)

AnonSurvivor
Posts: 18
Joined: Fri Oct 16, 2015 12:04 pm

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby AnonSurvivor » Sun Dec 17, 2017 8:15 pm

Following up here. I just had another clear CT scan, so that makes it five (5!) years and two months of NED since surgery.

I should also mention that I have been lifting free weights regularly for the last 14 months, and I expect to attempt a 300 lb bench press (I weigh about 225) later this week after struggling with 135 last fall. While I will admit that perhaps there is some mid-life crisis involved (I am 47), I began with the curiosity to see what physical limitations, if any, persist from 12 cycles of FOLFOX/Avastin and another 8 of just the FOLF/Avastin. Not too many, it seems, in my case.

My advice remains the same: Stay positive. Never give up. Power through the unpleasantness of chemo. Strive to live a normal life.

PM me with any questions.

P.S. Dr. Howard Hochster, my Onc, is leaving Yale to take a position with RWJUH (Rutgers). He will apparently have a larger admin role but still plans to see patients. I suspect he will eat less pizza in any event. I recommend Dr. Hochster without reservation to anyone with colon cancer.

Brearmstrong
Posts: 112
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby Brearmstrong » Mon Dec 18, 2017 10:18 am

Anon,

Thank you for the follow up! I am also being treated at YNHH with input from Sloan Kettering. Your story is so inspirational and please keep checking in and letting us know how you are doing. I'm coming to terms with my stage IV diagnosis and hoping beyond hope to be here in five years.
50 F diag 1/17
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Nov 17 PET p aortic nodes Stage IV
Folfori w/avastin
May 18 surgery on nodes xeloda 2yr
Aug 18-May 20 NED
July 20 hysterectomy
July 21 vats right lung
Clinical trial- failed liver Mets biopsy shows now poorly differentiated carcinoma.
HAI pump at MSK may 2022
Nov met to pancreas- causing pain
Radiation ablation to pancreas Dec 22
New lung Mets watch and wait

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

Postby NHMike » Mon Dec 18, 2017 10:55 am

That's a very impressive and inspiring story, particularly with all of those gene mutations. I think that the vast majority of CRC patients only have one.

I do think that they have great CRC surgeons at MGH and it's great that you have access to both Yale and MGH.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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