MSI-H with liver met, in search of help

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Reviresco
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Joined: Mon Mar 26, 2018 3:47 pm
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MSI-H with liver met, in search of help

Postby Reviresco » Mon Sep 03, 2018 7:37 pm

Hey CR community, I need some information and good vibes, and I know you have both!

Quick summary: I was diagnosed in March at age 41 with colon cancer (see my sig for details). No evidence of distant spread on CT. Colon surgery was done April 4. Pathology put me at Stage IIIB, with one cancerous lymph node.

I completed four cycles of Capox (Capecitabine and Oxaliplatin) between May and August. During that time, my genetic testing came back. I have Lynch Syndrome (PMS2 gene mutation). So my tumor biology is MSI-H, mismatch repair deficient (dMMR). People around me were celebrating because even though my tumor was large, it appeared that the rest of my body was cancer free.

Well, turns out we were wrong. My post-chemo CT scan on Aug. 28 showed a 1.4 cm liver spot. Looking back at the original CT scan from the time of diagnosis in March, radiologists were able to determine the spot was there all along. It was just too small in March for them to notice it. The damn spot definitely grew during chemo. “Shit,” I said to my oncologist.

The next step is an MRI to get a better look, and to see if there are other spots. If MRI confirms metastasis, I believe I will be bumped to Stage IVa, with a synchronous liver met that was not identified at the time of my colon surgery. That would also mean I failed on first-line chemotherapy, so the doors to immunotherapy should be open.

Keytruda, Opdivo, and Opdivo plus Yervoy seem to be used mostly for advanced Stage IV patients with lots of mets. I’ve read about the Keynote 177 study that is testing Keytruda as a frontline therapy in place of conventional chemo for MSI-H. Some doctors and scientists think that by applying the immunotherapy drugs earlier in the treatment process, they can destroy micrometastases and circulating cancer cells.

Sooo, some questions:
Does anyone have any insight about options for the treatment of an MSI-H patient with a liver met, who has failed Capox?
Liver resection then watch and wait?
Liver resection followed by a different conventional chemo cocktail?
What about resection followed by Keytruda or Opdivo, to target micrometastases and circulating cancer cells?
Or would there be reasons to “reserve” immunotherapy for later, if I have a recurrence?

I live in Maine. Do you have suggestions for oncologists and/or surgical oncologists at Dana-Farber and Mass General in Boston? I know about Dr. Kemeny and Dr. D’Angelica at MSK, and I'd like to get multiple teams looking at my case.

Thanks in advance for any help you can provide. I have a wife and two daughters, ages 11 and 13. I feel like I'm approaching a tipping point. I have to get this right.

In solidarity,

Trevor
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: MSI-H with liver met, in search of help

Postby martd » Tue Sep 04, 2018 9:01 am

Hi Trevor, sorry you're going through this. If you scroll down , it may even be on the next page but there is a thread on MSS with some new info. I believe the poster is jackandkatiesmom, that could be wrong but it's close. Not sure if it applies to your situation but check it out could be something for you. Good luck with everything,

Dan
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

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henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: MSI-H with liver met, in search of help

Postby henry123 » Tue Sep 04, 2018 10:30 am

Hello friend
Your case is almost same as mine. After surgeries and chemos , I am currently on Opdivo.
My advise:
Start immunotherapy at the earliest. Do not waste time and body strength on anything else.
Most important : do not get any surgery once you start immunotherapy.
Start aspirin too along with immunotherapy.
Best wishes,
Henry
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: MSI-H with liver met, in search of help

Postby teri3 » Tue Sep 04, 2018 9:19 pm

Sorry this had to happen :( . They are doing a lot of great things at NCI with immunotherapy trials. I'm on hold for the TIL trial and being considered for several other triald. Chemo is working to good so they want to hold off :)
Hugs
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
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Re: MSI-H with liver met, in search of help

Postby Reviresco » Wed Sep 05, 2018 9:47 am

martd wrote:Hi Trevor, sorry you're going through this. If you scroll down , it may even be on the next page but there is a thread on MSS with some new info. I believe the poster is jackandkatiesmom, that could be wrong but it's close. Not sure if it applies to your situation but check it out could be something for you. Good luck with everything,

Dan


Thanks Dan, I appreciate it!
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: MSI-H with liver met, in search of help

Postby Reviresco » Wed Sep 05, 2018 9:49 am

henry123 wrote:Hello friend
Your case is almost same as mine. After surgeries and chemos , I am currently on Opdivo.
My advise:
Start immunotherapy at the earliest. Do not waste time and body strength on anything else.
Most important : do not get any surgery once you start immunotherapy.
Start aspirin too along with immunotherapy.
Best wishes,
Henry


Thanks Henry, that’s exactly what I’m thinking. Now I just need to connect with a great team (surgical oncologist and Med oncologist) to work with. It is great to see how well you’re doing with Opdivo!
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: MSI-H with liver met, in search of help

Postby Reviresco » Wed Sep 05, 2018 9:50 am

teri3 wrote:Sorry this had to happen :( . They are doing a lot of great things at NCI with immunotherapy trials. I'm on hold for the TIL trial and being considered for several other triald. Chemo is working to good so they want to hold off :)
Hugs
Teri


Thanks Teri! Glad to hear chemo is working for you as you wait to hear about the trials. Wishing you the best!
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)

User avatar
henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: MSI-H with liver met, in search of help

Postby henry123 » Thu Sep 27, 2018 5:07 pm

Hope things work out for you and you have a great team to handle your case.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

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

Re: MSI-H with liver met, in search of help

Postby plastikos » Sat Sep 29, 2018 1:43 am

Trevor, sorry to hear about your diagnosis. You are basically at the point where I was when I was diagnosed (see my sig). I didn’t know I was MSI-H until late and also the data supporting PD-1 inhibitors was not there yet at that time. If I had to do it all over again I would’ve opted for immunotherapy instead of chemo right after my first resection. So my advice (keep in mind there might be no clinical evidence to back this up) is to have the liver met removed then go on immunotherapy as adjuvant treatment. Personally that’s what I wished I did. It would’ve saved me lots of money, 1 major surgery, 30 chemo sessions and the mental trauma of dealing with 2 recurrences. Good luck buddy.
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

User avatar
henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: MSI-H with liver met, in search of help

Postby henry123 » Sat Sep 29, 2018 3:46 am

Maybe not even mess with liver met.
Hopefully immunotherapy would take care of that too.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: MSI-H with liver met, in search of help

Postby Stewsbetty » Sat Sep 29, 2018 6:31 am

I am MSI-h, (MLH1 and PMS2) not Lynch. I did full 12 rounds of folfox and had a recurrence within 5 months. Multiple Mets to lymph nodes all over abdomen, chest and neck. We watched a lymph node in my neck grow 3 cm while doing 2 rounds of folfiri. Then I started Keytruda and within 3 months all my tumours had shrunk by 50%. I am a year in now with just a few involved nodes shrinking or remaining stable.

All that to give you a back story to my advice. I would get on immunotherapy right away and watch what it does. We scanned after 3 rounds and it was amazing to see the results - though it was apparent in my rapidly recovering health anyway. Definitely don’t waste any time on more chemo if it hasn’t shown any positive results. If the immunotherapy isn’t showing shrinkage after a few rounds then I would plan for surgery.

Immunotherapy can be much easier for the body to handle. I am doing so much more living than I was able to in chemo.

As a Canadian I have no advice on drs. But please keep us informed of your progress.
Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

Educator
Posts: 39
Joined: Mon Apr 09, 2018 3:38 pm
Facebook Username: Ebru köse

Re: MSI-H with liver met, in search of help

Postby Educator » Sat Sep 29, 2018 9:22 am

Hi, my husband has same history. He is stage 4 rectum ca. And lots of liver mets.and surgeon says inoperable. We think immunoteraphy.and I ask you somethngs. Mr shows his liver mets but pet ct doesnt show. So we curious. Mr shows 12 mm liver met and little mets. We are very confused :( :( is that normal ??
Caregiver of husband
Stage 4 rectum ca 14 dec 2017
Chemo 3 rounds vectibix
Pet ;10 mm met in liver
MRI; 1-4 mets in liver
Chemo 3 rounds
Pet ;NED
MRI ;1-5 mets in liver
6 rounds chemo
Pet;Ned
MRI; shows Unoperable liver mets ( 10-15)
6 rounds chemo ( pills changed)
Pet shows 1,4 cm and 1,7 cm mets in liver
MRI shows 5 mets
Planned chemo
Wellcome 2019

Dionca
Posts: 48
Joined: Sat Dec 02, 2017 2:04 am

Re: MSI-H with liver met, in search of help

Postby Dionca » Sat Sep 29, 2018 1:45 pm

Educator wrote:Hi, my husband has same history. He is stage 4 rectum ca. And lots of liver mets.and surgeon says inoperable. We think immunoteraphy.and I ask you somethngs. Mr shows his liver mets but pet ct doesnt show. So we curious. Mr shows 12 mm liver met and little mets. We are very confused :( :( is that normal ??


An MRI shows more clarity in the liver than a CT. I have had a couple of small nodules/lesions that have shown up on an MRI for a couple of years, which still don't show up on a CT. Because of this, my onc decided to alternate scans between the two. They seem to be benign as there has been no change in growth.

However, I am surprised that a 12mm met, doesn't even show up on a PET/CT - you might want to ask your husband's onc about that one.
stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy
recurrence in left lung (surgery May 2020)

Educator
Posts: 39
Joined: Mon Apr 09, 2018 3:38 pm
Facebook Username: Ebru köse

Re: MSI-H with liver met, in search of help

Postby Educator » Sat Sep 29, 2018 3:16 pm

My husband underwent an operation suddenly 14 december 2017. His age 31 :( . I was pregnant 4 months. And we shocked. Then he got ct / mr and pet. All of shows one met 12 mm . And ct / mr shows little lesions too. Pet only 1 met. Seg 3 liver. He got 12 chemoterapy and 2 mr shows same lesions but 2 pet shows nothing. His onc suspected and supposed surgery. He went hospital they took mr and said cancelled the surgery cause mr shows lots of lesions. Chemo had finished 1 month ago. We were shocked again. Final pet was ned and final mr shows progression. I asked onc he said it is normal. We will begin chemo again and my husband very upset our baby 4 months and I dont know what will I do? :(:(:(
Caregiver of husband
Stage 4 rectum ca 14 dec 2017
Chemo 3 rounds vectibix
Pet ;10 mm met in liver
MRI; 1-4 mets in liver
Chemo 3 rounds
Pet ;NED
MRI ;1-5 mets in liver
6 rounds chemo
Pet;Ned
MRI; shows Unoperable liver mets ( 10-15)
6 rounds chemo ( pills changed)
Pet shows 1,4 cm and 1,7 cm mets in liver
MRI shows 5 mets
Planned chemo
Wellcome 2019

Reviresco
Posts: 26
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: MSI-H with liver met, in search of help

Postby Reviresco » Tue Nov 20, 2018 9:43 am

plastikos wrote:Trevor, sorry to hear about your diagnosis. You are basically at the point where I was when I was diagnosed (see my sig). I didn’t know I was MSI-H until late and also the data supporting PD-1 inhibitors was not there yet at that time. If I had to do it all over again I would’ve opted for immunotherapy instead of chemo right after my first resection. So my advice (keep in mind there might be no clinical evidence to back this up) is to have the liver met removed then go on immunotherapy as adjuvant treatment. Personally that’s what I wished I did. It would’ve saved me lots of money, 1 major surgery, 30 chemo sessions and the mental trauma of dealing with 2 recurrences. Good luck buddy.


Thanks Plastikos. I agree with everything you're saying. Both of my oncologists say go for resection now, while there is very limited spread. I have two mets in the right lobe of my liver. The onc at Dana Farber says there is not enough data yet to support immunotherapy as adjuvant. He is recommending that we watch and wait after resection, and will deploy immunotherapy if I have further spread. I would prefer to go on immunotherapy ASAP, but I understand where he is coming from, in terms of lack of clinical evidence for that approach. I'm going to start another thread because one surgeon says he can do a wedge resection of the liver, and another surgeon says he needs to remove the full right lobe, because he doesn't think he can get clear margins with a wedge technique.
42 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4/18 Right hemicolectomy
1 of 25 lymph nodes, clear margins
Four cycles Capeox chemo. CEA 1.4
8/27/18 CT scan shows one liver spot. Two radiologists say it's not a met.
11/12/18 Oops... CT and MRI confirm liver met.
11/28/18 Liver resection
2/14/19 Recurrence in liver
4/9/19 Liver resection #2
8/22/19 Recurrence in liver. CEA 11.7
8/30/19 Started immunotherapy (Ipi-Nivo combo)


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