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 He said what so many others have heard their oncologists say, it's old and outdated and doesn't offer a better chance of survival.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.