nivolumab + ipilimumab + radiation in mss and MSI high

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PeterG
Posts: 52
Joined: Tue Feb 03, 2015 12:32 pm

nivolumab + ipilimumab + radiation in mss and MSI high

Postby PeterG » Sat Dec 01, 2018 10:19 pm

I am not MSI high, hence it was my understanding that, with MSS tumors, I would not be a good candidate for immunotherapy. I have, however, been recruited and approved for a trial at Mass General called nivolumab and ipilimumab and radiation therapy in mss and MSI high colorectal and pancreatic cancer (Ca209-806). Anyone participating? Any insight, information, wisdom or warnings to offer?
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--& multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable"
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.
9/2018: Tumor growth. Begin Stivarga.

PeterG
Posts: 52
Joined: Tue Feb 03, 2015 12:32 pm

Re: nivolumab + ipilimumab + radiation in mss and MSI high

Postby PeterG » Sat Dec 01, 2018 10:38 pm

DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--& multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable"
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.
9/2018: Tumor growth. Begin Stivarga.

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

Re: nivolumab + ipilimumab + radiation in mss and MSI high

Postby henry123 » Thu Dec 06, 2018 7:25 pm

Best of luck.
Hopefully the trial delivers for you.
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

PeterG
Posts: 52
Joined: Tue Feb 03, 2015 12:32 pm

Re: nivolumab + ipilimumab + radiation in mss and MSI high

Postby PeterG » Sun Dec 09, 2018 8:11 pm

Thanks Herry123. I am apparently starting on the 31st, barring any unexpected occurrences. Would love to hear from folks who have been involved with this particula combination of immunotherapy drugs, with or without radiation—or who know more about this trial or other similar trials. Seems promising, and exciting, but I am somewhat unnerved by throwing myself into this basket with no real backup—have to be off any and all chemo or other cancer drugs (on Stivarga until three days ago) and then I have to trust in these Mass General docs, and fate.
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--& multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable"
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.
9/2018: Tumor growth. Begin Stivarga.

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

Re: nivolumab + ipilimumab + radiation in mss and MSI high

Postby henry123 » Tue Dec 11, 2018 9:04 pm

PeterG wrote:Thanks Herry123. I am apparently starting on the 31st, barring any unexpected occurrences. Would love to hear from folks who have been involved with this particula combination of immunotherapy drugs, with or without radiation—or who know more about this trial or other similar trials. Seems promising, and exciting, but I am somewhat unnerved by throwing myself into this basket with no real backup—have to be off any and all chemo or other cancer drugs (on Stivarga until three days ago) and then I have to trust in these Mass General docs, and fate.


When I first started on opdivo, it was pretty uncharted territory for even msi cases, so trust and take the plunge.
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

PeterG
Posts: 52
Joined: Tue Feb 03, 2015 12:32 pm

Re: nivolumab + ipilimumab + radiation in mss and MSI high

Postby PeterG » Sun Dec 16, 2018 12:30 am

When I first started on opdivo, it was pretty uncharted territory for even msi cases, so trust and take the plunge.


Thanks Henry123. Somewhat frightening, in that I am not MSI-H, 4.5 years after treatment for metastasis. Checkpoint inhibitors were seemingly out of reach until now. Still not covered by insurance. Surprised no one else on Colon Talk has offered any feedback.
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--& multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable"
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.
9/2018: Tumor growth. Begin Stivarga.

User avatar
Jack&KatiesMommy
Posts: 640
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: nivolumab + ipilimumab + radiation in mss and MSI high

Postby Jack&KatiesMommy » Tue Dec 18, 2018 11:09 am

PeterG:
Do you know what your mutation burden is? Did you have Foundation One testing on your tumor? If you have (now--because years of treatment can cause our cancer to mutate) a moderate mutation burden (12+) then Keytruda may work on you as it does for MSI high patients. Foundation One has a blog on this very result and I am one of the patients studied. I am so fortunate to have been given the opportunity to go down this path. You may be headed for the same!
Cynthia
Cynthia
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,


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