Keytruda....Working for MSS....Mutation Burden is the Key

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Jack&KatiesMommy
Posts: 507
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Keytruda....Working for MSS....Mutation Burden is the Key

Postby Jack&KatiesMommy » Sun Aug 05, 2018 11:29 pm

i wanted to give you all an update on my off-label use of Keytruda (since I am MSS it is not approved for use by me....since it doesn’t generally work for colon cancer patients which microsatellite stable tumors.)

HOWEVER, it looks like it is working for me....and here is the reason why (according to my doctor and the Foundation One reps): it is not whether the tumor is ZmSS or MSI that is determinative as to whether the immunotherapy will work....it is the THE TUMOR’S MUTATION BURDEN THAT DETERMINES WHETHER KEYTRUDA WILL WORK.

Foundation One is seeing evidence that people whose tumors have a high (or moderately high) mutation burden tend to respond to the immunotherapy treatments. Generally MSI tumors have a high mutation burden and MSS tumors have just one or two mutations if any. In my case (probably dilute to the fact that I’ve had many different courses of treatments over the kart 7 years) my ZmSS tumor has a moderate mutation burden (11 mutations.). So my local oncologist (who has been doing tons of work with immunotherapy over the last 6 years) got permission to treat me with Keytruda off-label.

My CEA (which is super sensitive and very accurate over the last 7 years) was 39.6 before my first Keytruda treatment. Three weeks later, before my second treatment, my CEA had risen to 66.4. Before my third treatment, my CEA was back down to 39.2, and three weeks later before my 4th treatment it was down to 13.0. On Friday, before my 5th treatment my CEA was down to 3.5 and my CT scan showed shrinkage of the only slightly enlarged lymph nodes in my hilar lung area to normal size.

This is an amazing breakthrough for MSS patients. If you are MSS, please get Foundation One Testing to see if you have a moderate or high mutation burden. If you do, immunotherapy couldvwork for you.

Please feel free to contact me if you have questions.
Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5
Lymph nodes all normal via CT scan

stu
Posts: 759
Joined: Sat Aug 17, 2013 5:46 pm

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby stu » Mon Aug 06, 2018 2:55 am

That is utterly amazing . You are pushing medical boundaries for sure.
So happy for you.
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

plastikos
Posts: 299
Joined: Wed Jan 14, 2015 6:09 am

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby plastikos » Mon Aug 06, 2018 8:34 am

Amazing news. Hoping for your continued response to Keytruda.
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, 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 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab
Sept 2017 - SIRT

boxhill
Posts: 90
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby boxhill » Mon Aug 06, 2018 10:52 am

Cynthia, this is great.

Is this something your health insurance will agree to pay for?
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, mut KRAS, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

crazylife
Posts: 251
Joined: Wed Dec 30, 2015 11:29 am

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby crazylife » Mon Aug 06, 2018 12:30 pm

Such great news! Can someone tell me what this means? I can't tell if he has all of these or just the first two mentioned. This is from MSK-IMPACT:

Positive for the following somatic alterations in the clinically validated panel:

1. KRAS
2. TP53

Positive for the following somatic alterations in the investigational panel:

3. AMER1
4. APC
5. APC
6.PTEN
7. REL
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

User avatar
Jack&KatiesMommy
Posts: 507
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Jack&KatiesMommy » Mon Aug 06, 2018 2:34 pm

boxhill wrote:Cynthia, this is great.

Is this something your health insurance will agree to pay for?


Great question. Yes, actually my insurance IS covering this treatment even though it is off-label for me due to my MSS status. However, my local oncologist submitted a request along with all of his data as well as that from Foundation One showing the correlation between mutation burden and Keytruda effectiveness that resulted in approval.

Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5
Lymph nodes all normal via CT scan

User avatar
Jack&KatiesMommy
Posts: 507
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby Jack&KatiesMommy » Mon Aug 06, 2018 2:40 pm

crazylife wrote:Such great news! Can someone tell me what this means? I can't tell if he has all of these or just the first two mentioned. This is from MSK-IMPACT:

Positive for the following somatic alterations in the clinically validated panel:

1. KRAS
2. TP53

Positive for the following somatic alterations in the investigational panel:

3. AMER1
4. APC
5. APC
6.PTEN
7. REL


Unfortunately, I am not sure what this means. To my understanding, the Foundation One test is the only one that does mutation burden testing.
Cynthia
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(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; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new mets lymph nodes in hilar/lung:
05/18: Started Keytruda (MSS but moderate mutation burden): CEA: 66.4, 39.2, 23.8, 13, 3.5
Lymph nodes all normal via CT scan

boswind
Posts: 39
Joined: Fri Apr 11, 2014 12:04 pm

Re: Keytruda....Working for MSS....Mutation Burden is the Key

Postby boswind » Thu Aug 09, 2018 9:40 pm

Great news! Thank you.

I contacted FoundationOne to get more information. For those who have advaced MSS colon cancer and have had targeted therapies for years, there is a chance that they have more gene mutations. Consequently, Keytruda may work for some of them. I am excited and will talk to my onc immediately.

The cost of the test is $5800 (listed price). The true price a insurance company will pay is likely:
Over $3000 if the testing sample is biopsy tissue and they will test 324 genes for mutations;
Under $2500 if the testing sample is peripheral blood and they test 62 genes for mutations.
01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
01.25.2018 - present, Centuximab + Irinotecan
70 rounds of chemos received (as of 03.2018)
Current CEA: 5.7
MSS, KRAS wild type, BRAF wild type


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