For those previously advised no surgery.....

Please feel free to read, share your thoughts, your stories and connect with others!
Trying
Posts: 170
Joined: Sun May 13, 2018 10:11 pm

For those previously advised no surgery.....

Postby Trying » Tue Nov 06, 2018 3:38 pm

Hello all,
Those of you who were advised that your liver mets were not an option for surgery, how long on chemo before you were able to have surgery. Im sure it varies widely but just curious. Surgery hope is what im hanging onto .....

Trying
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.

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

Re: For those previously advised no surgery.....

Postby hiker » Tue Nov 06, 2018 4:06 pm

If you are only doing systemic chemo, it may never get you to operable. I don't know where you're being treated or even what chemo you are on, but I was told by 4 oncologists that surgery was not an option for me. That was until I visited MSK in NYC. Not only did they remove all the cancer in my liver, but they implanted an HAI pump to hopefully prevent a recurrence - no guarantee, but I'll take any advantage I can get.

Are you being treated at a major cancer center? Have you obtained second, third or even fourth opinions? If not, I urge you to contact a facility that specializes only in cancer care.

hiker
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

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: For those previously advised no surgery.....

Postby LeonW » Tue Nov 06, 2018 4:29 pm

Hi Trying,

I was in your shoes 6 yrs ago when docs decided it was best to attack the colon first, as liver mets were too big for surgery. Chemo started some 6 weeks after the colon job. Mets shrunk from cycle three. All in all the liver resection was almost 9 months after the colon job: first 6 weeks recovery from colon surgery, then 8 cycles of chemo and then another 6 weeks waiting time to get rid of chemo remnants. Have been cancer free for 5 yrs now and life is back to almost normal. Even forgot to celebrate the 5 yr anniversary two weeks ago :shock:

Best wishes - Leon
Dec 2012 - CC, 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen, 2/26 nodes, IVa T3N1bM1a MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2 failed PV embolizations
Oct 2013 - R liver resect 28d hosp (liver failure/delirium, lung emboli, encephalopathy), cancer dead (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town, new life
June 2018 - 5 yr mark, scopy: 2 new polyps
1.3-1.4 CEA/clean CT: 4x2014, 6x2015-17, 2x2018-19 :D, next June 2020

stu
Posts: 1173
Joined: Sat Aug 17, 2013 5:46 pm

Re: For those previously advised no surgery.....

Postby stu » Tue Nov 06, 2018 4:34 pm

6 cycles for my mum .
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 .

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

Re: For those previously advised no surgery.....

Postby Trying » Tue Nov 06, 2018 6:40 pm

Im at a major cancer center in Canada BC. Already on my second oncologist as he had morw info than the first one. He is talking about pissible surgery in future but not yet. Thats why i thought i would ask you all.
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.

martd
Posts: 106
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: For those previously advised no surgery.....

Postby martd » Tue Nov 06, 2018 9:25 pm

I did 10 rounds before first lever surgery then 2 more before the second. At my first scan my oncologist told me I wouldn't have surgery, he talked about maintenance chemo. The scan showed about 40% shrinkage. My surgeon told me in the beginning there was potential for surgery with a good response form chemo. Then the second scan showed another 30% shrinkage. Surgery was successful with clear margins. So don't give up, talk with the surgeon if the oncologist is saying no. After round 8 I did two more rounds without avastin.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

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

Re: For those previously advised no surgery.....

Postby Trying » Tue Nov 06, 2018 10:11 pm

Thank you so much for all your replies.
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.

Detox
Posts: 47
Joined: Fri Apr 28, 2017 5:27 pm

Re: For those previously advised no surgery.....

Postby Detox » Wed Nov 07, 2018 2:00 pm

Also, I have read about other members on here who have treated liver lesions one at a time using ablation, cryo, etc. I've never done it myself but I think doctors can get rid of difficult tumors using different techniques. So once you have maybe some tumors that are not currently operable, maybe they can just get rid of those, and then get to surgery later.

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

Re: For those previously advised no surgery.....

Postby Trying » Thu Dec 13, 2018 5:07 pm

Seems many were able to have surgery after 6 treatments which has mw a bit discouraged. I just found out that 8 of my small tumors disapeared but surgery not option yet. Hoping to hear from some of you that waited a longer period than 6 months for surgery to be an option. Thanks
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.

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

Re: For those previously advised no surgery.....

Postby Number1994 » Thu Dec 13, 2018 8:26 pm

I had a colon resection and HAI pump implanted on 2/23/18. Liver resection on 6/1/2018.
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.

Detox
Posts: 47
Joined: Fri Apr 28, 2017 5:27 pm

Re: For those previously advised no surgery.....

Postby Detox » Fri Dec 14, 2018 12:06 am

Did the doctor say why you are not a surgical candidate? Typically 3 lesions or less on the liver is the typical marker. I've also seen patients do HIPEC and liver resection simultaneously so you might want to ask the oncologist and surgeon about this.

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

Re: For those previously advised no surgery.....

Postby Trying » Fri Dec 14, 2018 12:26 am

One of my mets is on an artery so we need that one to shrink more :D
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.

Detox
Posts: 47
Joined: Fri Apr 28, 2017 5:27 pm

Re: For those previously advised no surgery.....

Postby Detox » Fri Dec 14, 2018 12:38 pm

I know there is a procedure where they can block blood flow to tumors in the liver, causing tumors to die out. I'm sorry that I don't know the name of it but you can also ask your GI about it. My oncologist never mentioned this but a GI told me about it. This is usually done for a small number of tumors.

User avatar
ginabeewell
Posts: 273
Joined: Wed Oct 24, 2018 10:30 am

Re: For those previously advised no surgery.....

Postby ginabeewell » Sat Dec 15, 2018 9:54 am

I was in the same position as you. Now 5 rounds in and discussing surgery and radiation given strong response to chemo.

I talked to three doctors who didn't want to discuss surgery at diagnosis. They said it was like talking college entry during preschool. I switched to a fourth doctor who outlined what would have to happen for surgery to be an option. And if my chemo response hadn't been as good as it has been, I would be pushing in a big way for the HAI pump to get me to operable.
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

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

Re: For those previously advised no surgery.....

Postby Trying » Sat Dec 15, 2018 9:29 pm

They dont want hai pump if i have peri met however ivr had 8 tumors disapear with chemo so hoping it continues to work so well
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.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 35 guests