Stage IV to NED in 9.5 months!

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Number1994
Posts: 4
Joined: Wed Feb 14, 2018 10:58 am

Stage IV to NED in 9.5 months!

Postby Number1994 » Sat Nov 10, 2018 1:34 pm

Hi everyone,

Been reading since my DX, but this is my first post. I thought I'd share my story. Like other people I scoured the board for success stories.

I am a 39yo male who was diagnosed with Stage IV Colon Cancer on 1/25/2018. I had a 7cm tumor in the Sigmoid Colon. MRI revealed 7 mets to the liver, the largest being 7x9 cm. The local oncologist I went to advised me that I was not operable and never would be. He said he could keep me as comfortable as possible for as long as possible. I had been researching the HAI pump before seeing him so I asked him about it. He said what so many others have heard their oncologists say, it's old and outdated and doesn't offer a better chance of survival.

I did not like what I was hearing so I scheduled an appointment at MSKCC and met with Dr. Kemeny. She agreed that I wasn't resectable at that moment but that we could get there with the HAI pump.

I had a colon resection on 2/23/2018. Dr. Paty removed 18 inches of colon, but was able to reconnect the ends so I did not need a colostomy. He also removed my gallbladder and 18 lymph nodes (3 were positive). While he was in there he saw that the cancer had spread throughout the mesentery which required him to also do a TME.

I began systemic chemo on 3/12/2018. Protocol was Oxaliplatin and Irinotecan every two weeks. No 5-FU. FUDR was put in the HAI pump at this time as well. I had the typical side effects, cold sensitivity, fatigue etc...

On 5/7/2018 I had an MRI and CT scan to evaluate the extent of disease. Dr. Kemeny came in the room to discuss the results and said "You have had an unbelievable response to the chemo, I'm trying to get a hold of the liver surgeon now." My wife and I were over the moon.

Liver resection was done on 6/1/2018, Dr. D'Angelica removed 6 of the 7 tumors. There was a tiny tumor that was abutting the middle hepatic artery that was left in place. Dr. D'Angelica suspected that it was dead and elected not to remove it at that time. Doing so would've required the removal of the entire left side of my liver and he didn't think that was a wise choice. Pathology from surgery showed that all but one of the tumors had a 100% pathological response. Meaning the tumors were dead when they were resected. The one tumor that didn't have a complete response had an estimated 90% response. Because of this Dr. D'Angelica said that my chance of recurrence was significantly lower, approximately 25% he said.

After a 4 week break because of surgery I restarted systemic chemo. HAI was put on hold because my ALK was still slightly elevated. After two more rounds of systemic, I began to develop peripheral nueropathy so Dr. Kemeny removed the Oxaliplatin from the mix and added 5-FU (FOLFIRI).

On 9/2/2018 I had another MRI/CT and it showed zero change in the tiny met left in the liver. This coupled with the pathology report from surgery, further lead Dr. Kemeny to believe it was dead. I also restarted FUDR in the pump at a reduced dose.

On 11/5/2018, I had another MRI/CT. No new metastatic site and tiny liver met again unchanged. Dr. Kemeny came in the room and said "Okay, we're going to stop treatment because they're is nothing else to treat, you're NED, that tiny liver met is dead" She advised that I will have to continue to come back every two months for the foreseeable future for scans and HAI pump glycerial fill (I have the Codman pump).

The entire time during treatment my CEA never rose above 2.7, so not an indicator for me. LDH was what was used. My LDH ranged from 370 in the beginning to 150 or so now. I had zero side effects from the HAI pump. My liver enzymes would be elevated at times, but that is to be expected. Dr. Kemeny is a wizard when it comes to adjusting the pump dosage.

I can't say enough good things about Sloan Kettering. Everyone from their janitorial staff to thier surgeons are the best in the field. That hospital is just a well oiled machine. I would recommend anyone facing this terrible diease to get an opinion there. I would also say that if you have liver involvement and your oncologist is telling you the HAI pump doesn't work, it may be time to find a new oncologist.

Thanks for taking the time to read. I have learned a lot on this forum over the last nine months and hope my story brings some hope to some.
Last edited by Number1994 on Sat Nov 10, 2018 5:04 pm, edited 1 time in total.
1/25/18: 39yo male DX Stage IV, 7cm primary Sigmoid colon, 7 Liver Mets
2/23/18: Colon Resection, TME, HAI Pump implated MSKCC (Dr. Paty)
3/12/18: Start Oxaliplatin and Irinotecan
5/7/18: MRI/CT, Liver mets shrunk by 60%-75%
6/1/18: Liver resection (Dr. D'angelica), 6 out of 7 tumors removed. tiny met left in place, suspected dead
8/2/18: Drop Oxaliplatin, add 5-FU
9/12/18: Buy new Corvette, because fuck cancer.
11/5/18: Dr. Kemeny confirms MRI/CT show NED.

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Stage IV to NED in 9.5 months!

Postby Spazzyjanet » Sat Nov 10, 2018 4:27 pm

Thank you for sharing. I am currently trying to decide between two surgeons and approaches, one of which involves an HAI pump. This helps me make my decision.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

cartech78
Posts: 59
Joined: Thu Oct 25, 2018 6:22 pm

Re: Stage IV to NED in 9.5 months!

Postby cartech78 » Sat Nov 10, 2018 5:09 pm

Great news. Just got back from MSK. We have a very similar signitaure. Kemeny wants me to do 3 rounds of Folfox and come back on Dec18 where she is putting be in front of the surgeons to see what were going to do. Congrats on the NED!!!!!
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/12/18 3rnds
Report back to MSK on 12/18/18 for further instructions.

User avatar
ginabeewell
Posts: 243
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage IV to NED in 9.5 months!

Postby ginabeewell » Sat Nov 10, 2018 5:45 pm

That's amazing. Did you do anything in addition to traditional treatment or was your response solely the result of the chemo?

Very happy for you - especially since my starting position is very similar to yours!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

deanfromuk
Posts: 10
Joined: Fri Aug 24, 2018 1:36 pm

Re: Stage IV to NED in 9.5 months!

Postby deanfromuk » Sat Nov 10, 2018 5:54 pm

Wonderful for you, a blessing and a half!

Punky44
Posts: 322
Joined: Mon Oct 01, 2018 4:29 pm

Re: Stage IV to NED in 9.5 months!

Postby Punky44 » Sat Nov 10, 2018 6:10 pm

Congratulations to you!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at 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
CEA 4/23: 2.1
6/28/19 Reversal and port out

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

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: Stage IV to NED in 9.5 months!

Postby hiker » Sat Nov 10, 2018 6:25 pm

MSK in general and doctors Kemeny and D'Angelica in particular are the best at what they do. They saved my life too.
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

heiders33
Posts: 339
Joined: Sat Nov 04, 2017 11:08 am

Re: Stage IV to NED in 9.5 months!

Postby heiders33 » Sat Nov 10, 2018 8:19 pm

Amazing story! Gives me encouragement as my liver enzymes went up after just one round of FUDR. But I know Dr K is truly a wizard and I trust her. Thanks for sharing and congrats!
36 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU

Number1994
Posts: 4
Joined: Wed Feb 14, 2018 10:58 am

Re: Stage IV to NED in 9.5 months!

Postby Number1994 » Sun Nov 11, 2018 7:30 am

ginabeewell wrote:That's amazing. Did you do anything in addition to traditional treatment or was your response solely the result of the chemo?

Very happy for you - especially since my starting position is very similar to yours!



Thanks!

I did not do any alternative therapy in addition to treatment. I did eat ginger candies to help with the nausea after my systemic treatments. I also took Zofran every six hours like clockwork regardless if I was feeling nauseous.
1/25/18: 39yo male DX Stage IV, 7cm primary Sigmoid colon, 7 Liver Mets
2/23/18: Colon Resection, TME, HAI Pump implated MSKCC (Dr. Paty)
3/12/18: Start Oxaliplatin and Irinotecan
5/7/18: MRI/CT, Liver mets shrunk by 60%-75%
6/1/18: Liver resection (Dr. D'angelica), 6 out of 7 tumors removed. tiny met left in place, suspected dead
8/2/18: Drop Oxaliplatin, add 5-FU
9/12/18: Buy new Corvette, because fuck cancer.
11/5/18: Dr. Kemeny confirms MRI/CT show NED.

Capri
Posts: 74
Joined: Thu Apr 19, 2018 5:59 pm

Re: Stage IV to NED in 9.5 months!

Postby Capri » Sun Nov 11, 2018 12:11 pm

Great to hear such wonderful news! Blessings to you and keep NED!
Mom to son 46 yo at Dx (2017)
11/17 colonoscopy sigmoid tumor; CT & MRI chest, abd,& pelvis clear; CEA normal
1/18 Robotic resection, Path: adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 Port placed; 2/26/18 Begins FOLFOX
6/18 On Early surveillance CT 2 liver hemangiomas, PET scan-nothing "lit up"
Neuropathy has started.
7/30/18 Completed 12 cycles of FOLFOX.
Port removed October
11/2/18 Clean colonoscopy; 11/20 CT normal.
3/2019 Abdominal CT normal

Trying
Posts: 170
Joined: Sun May 13, 2018 10:11 pm

Re: Stage IV to NED in 9.5 months!

Postby Trying » Sun Nov 11, 2018 3:19 pm

Love this story
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets and peri metApril 2018
Folfox as of June 2018
Down to 2 mets in liver dec 2018.

User avatar
juliej
Posts: 3001
Joined: Thu Aug 05, 2010 12:59 pm

Re: Stage IV to NED in 9.5 months!

Postby juliej » Wed Nov 14, 2018 6:35 pm

Totally agree with you! I am alive today because of Dr. Kemeny, Dr. D'Angelica, and all the brilliant fellows and nurses at MSKCC!

I love this line in your signature:
9/12/18: Buy new Corvette, because fuck cancer.

Yes!!!! :D :D :D

Congratulations on your NED status! Here's to a long and healthy life!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

chadwick1
Posts: 23
Joined: Sat Oct 13, 2018 9:04 am

Re: Stage IV to NED in 9.5 months!

Postby chadwick1 » Wed Nov 14, 2018 9:04 pm

Thanks for sharing your story Number1994, that’s incredible! It gives me so much hope hearing stories like yours and others here. Congratulations!
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3N1bM0) no genetic indicators, normal CEA
7/2017 radiation + 5FU
10/2017 LAR w/ temp loop ileo. clear margins, 2/33 nodes
11/2017-3/2018 FOLFOX, 9 rounds
2/2018 clear CT
4/2018 ileo reversal
10/2018 CT shows suspicious mass in liver (1.7 cm), and in lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, clear margins
1/2019 CT: lung node shrank to 0.3 cm
3/2019 CT: unchanged/clear!


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