Recommendations for stage 4/liver mets

Please feel free to read, share your thoughts, your stories and connect with others!
supportingsister
Posts: 14
Joined: Sun Oct 16, 2011 3:26 pm
Facebook Username: elizabeth kirkpatrick mosier

Recommendations for stage 4/liver mets

Postby supportingsister » Mon Jun 11, 2018 5:43 pm

Hello,
My sister 45 was diagnosed with stage 2b colon cancer in 2011. In 2015, she has hipec and was disease free until feb 2018 when a new tumor developed in her colon and 2 liver mets. They did a second resection and abalation. First scan was clear, but repeat last week showed 5 small liver mets. Dr is ready to give up, my sister is not. We’d like to get a second opinion and maybe third. Looking for recommendations. My sister is in Massachusetts and currently treated at MGM.

Thank you!

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Recommendations for stage 4/liver mets

Postby plastikos » Mon Jun 11, 2018 8:20 pm

Hi. Try to get into a major cancer center like MSK or MDA. Try looking into SIRT (Y90), immunothsrapy or even just a new chemo regimen. Lots of options. Good luck.
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

stu
Posts: 876
Joined: Sat Aug 17, 2013 5:46 pm

Re: Recommendations for stage 4/liver mets

Postby stu » Tue Jun 12, 2018 1:24 am

Hi ,
Great advise to get another opinion . That’s exactly what happened to my mum. She had a second recurrence with five small mets . The biggest was around I cm. Our positive spin was that the tumour load was considerably smaller than before . However the oncologist was not keen to refer her to a surgeon . So , so glad we carried on regardless as that was seven years ago and the surgeon removed over 73% of her liver . I suspect she had a lot more disease by that stage as he compassionately said “ we found what we expected ... cancer “ and quickly moved the conversation on . Seven years later it’s still clear .
Follow your instincts,
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 .

Foggyocean
Posts: 15
Joined: Wed Aug 30, 2017 12:31 pm

Re: Recommendations for stage 4/liver mets

Postby Foggyocean » Tue Jun 12, 2018 9:45 am

Hi, I agree your sister should not give up! We are in Mass. too and my husband was at MGH (is that what you meant?). Once he had a liver recurrence, we sought a 2nd opinion with Dr. Kemeny at Memorial Sloan Kettering in NYC. If your sister is willing to travel, I would HIGHLY recommend she get a second opinion there. My husband received the HAI pump which delivers chemo directly to the liver. He is currently NED for the 2nd time. During active treatment we travelled to NYC once a month for treatment down there and were able to have his HAI pump and systemic chemo locally at Lahey in Burlington. (MGH doesn't have the staff or equipment to service the HAI pump). PM me with any questions. If your sister's doc is giving up, it sounds like she needs a new doctor!
45 year old caregiver to Husband
DX 3/16: 3cm Adenocarcinoma of sigmoid colon, Grade 2
4/16: colon resection; Stage IIIc (at diagnosis), 6/42 nodes, CEA: 11, MSS, KRAS
5/16: Baseline CT & MRI show 4 liver mets, CEA: 99
5/16-1/17: 4x FOLFOX, liver resect, 8x FOLFOX
8/17: 1 liver met, CEA 46.5
10/17: HAI pump; FUDR + Folfiri Oct-Apr '18 w/Dr. K @MSK
1/18: SBRT to liver met; CURRENTLY NED CEA 0.8

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Recommendations for stage 4/liver mets

Postby VeggieLvr » Tue Jun 12, 2018 12:29 pm

Foggyocean wrote:Hi, I agree your sister should not give up! We are in Mass. too and my husband was at MGH (is that what you meant?). Once he had a liver recurrence, we sought a 2nd opinion with Dr. Kemeny at Memorial Sloan Kettering in NYC. If your sister is willing to travel, I would HIGHLY recommend she get a second opinion there. My husband received the HAI pump which delivers chemo directly to the liver. He is currently NED for the 2nd time. During active treatment we travelled to NYC once a month for treatment down there and were able to have his HAI pump and systemic chemo locally at Lahey in Burlington. (MGH doesn't have the staff or equipment to service the HAI pump). PM me with any questions. If your sister's doc is giving up, it sounds like she needs a new doctor!


Completely agree with Foggyocean - I am a Dr. Kemeny patient and I have multiple liver mets. I am scheduled to get the pump next week. MSK is a great place, they do everything they can for their patients.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Recommendations for stage 4/liver mets

Postby mpbser » Wed Jun 13, 2018 2:52 am

My husband also goes to MGH and "is" Stage 4 with 1 met to the liver that was surgically removed a few months ago. He probably has the same doctors as your sister as there is only one liver surgeon and one colorectal oncologist who specializes in liver cancer. I'm very surprised to hear that they are ready to throw in the towel. That doesn't seem at all like what I would expect from them. Were you at the appointment? This could just be your sister's perception about the situation. I will be adding your sister to my prayers.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

supportingsister
Posts: 14
Joined: Sun Oct 16, 2011 3:26 pm
Facebook Username: elizabeth kirkpatrick mosier

Re: Recommendations for stage 4/liver mets

Postby supportingsister » Wed Jun 13, 2018 1:43 pm

Thank you. I’ve given her the information about Dr. Kemeny. Fingered-crossed that she makes an appointment. I’m extremely disappointed mgh didn’t even mention the possibility of a HAI pump, I did some research and it seems like a good option. My sister is not on this board, but anybody would be willing to answer questions, please pm with your email. Mine is elizakirk@gmail.com.


Thank you,
Elizabeth


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



Who is online

Users browsing this forum: Google [Bot], lovelife789 and 42 guests