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

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Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

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

Postby Jack&KatiesMommy » Thu Aug 30, 2018 8:11 am

Steph20021 wrote:Thanks Dionca, I don’t know why foundation one quoted me more- unless cost has gone up or she quoted me for a different test. Either way I can’t afford it. So my plan is that I will start with getting a test done through a trial at PMH. I’ll speak with my oncologist tomorrow about it.
Hoping I can get a current biopsy done of a tumour I have now rather than my 4.5 year old banked stuff. I’ve done a lot of chemo since then.

Dionca wrote:
Steph20021 wrote:I wonder, can Canadians get Foundation One testing? What exactly am I asking them for, (just for “mutation burden testing of my tumour”) and how much could I expect to pay, any ideas?


Steph - here is a recent article posted on Colorectal Cancer Canada, that makes reference to the Foundation's mutation burden testing. It says the test is $5,800.

"All Cancer Patients Should Have Access To Genomic Testing"
http://archive.colorectalcancercanada.c ... ting/,5275
The novelty of Foundation’s approach—like that of a few other companies leading the field of cancer diagnostics—is the scope of testing. These laboratories examine hundreds of genes by a method called next-generation sequencing (NGS). For a price of $5800, in two weeks’ time, Foundation reports on tumor mutation burden (TMB), microsatellite instability (MSI), and mutations in any of 324 genes that may indicate sensitivity—or resistance—to oncology drugs.


Steph & Dionca:
You can apply for Financial Assistance....Foundation One is very generous in its application of the criteria. I am a lawyer and we are financially very comfortable. But when I applied I listed my dependents and my medical bills, house mortgage, cars, etc. and my financial responsibility was reduced by 60%. I would suggest that you call Foundation One and ask about this potion.
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 NOW 1.8
08/18 Clear CT scan

boswind
Posts: 40
Joined: Fri Apr 11, 2014 12:04 pm

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

Postby boswind » Mon Sep 10, 2018 1:50 pm

When I was seen by my oncologist last week, I mentioned to him the tumor mutation burden and possibility of MSS patient responding to Keytruda. He said he would put me on a study program immediately and I would be tested extensively regarding gene mutation. If I have "right" mutations, I will be given Keytruda right away. Furthermore, the study program will pay for the cost of all gene mutation testing.
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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Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

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

Postby Jack&KatiesMommy » Tue Sep 11, 2018 10:08 am

boswind wrote:When I was seen by my oncologist last week, I mentioned to him the tumor mutation burden and possibility of MSS patient responding to Keytruda. He said he would put me on a study program immediately and I would be tested extensively regarding gene mutation. If I have "right" mutations, I will be given Keytruda right away. Furthermore, the study program will pay for the cost of all gene mutation testing.


That is great! Where are you seen? This I great news for anyone in your area that is MSS. I'll keep my fingers crossed that you have a solid mutation burden. Please come back and let us know.
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 NOW 1.8
08/18 Clear CT scan

mhf1986
Posts: 150
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

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

Postby mhf1986 » Fri Oct 05, 2018 11:21 am

:?: :?:

Can anyone tell me where a study program in the US is or give me reference to a scholarly article about this? DH liver tumors, lymph nodes, and lung things grew again after only 5 months on Vectibex/Irinotican. The July scan showed shrinkage of a liver tumor to 3cm and now it's bounced up to 7cm, as large as its been since starting at 10cm 2 years ago at diagnosis.

I mentioned the Foundation One testing for tumor mutation to try Keytruda and Dr. told me they had all the info they needed abut DH and no MSS patient was showing benefit from Keytruda. This is the same response I've gotten when I asked about immunotherapy and NIH "Sleen" trial. So I'm going out on my own to find something because I just don't think this guy is willing to be creative.

Here we sit, between DC and Baltimore and I'm getting these kinds of answers??

Thanks,
m
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials

User avatar
Jack&KatiesMommy
Posts: 519
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

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

Postby Jack&KatiesMommy » Fri Oct 05, 2018 2:22 pm

Call Foundation One. They are the ones amassing all of the data on this. They are the ones who altered my oncologist in Ohio to this. You can ask your oncologist to call mine as I am certain he will talk to him about the success he has had with Keytruda and MSS at the Ohio State University Cancer Center. His name is Dr. Jeffrey Vandeusen.
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 NOW 1.8
08/18 Clear CT scan

mhf1986
Posts: 150
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

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

Postby mhf1986 » Fri Oct 05, 2018 7:00 pm

Thank you so much! A good place to start.

DH surprised everyone with FOLFOX working for 18 months. Now he's surprising everyone with the Vectibex+Irinotican only working 4 months. It was such a big surprise because the CEA was mostly stable and the liver function tests were looking good. No one expected the CT scan to show such growth so soon. Dr. thought it would be another 8 months to a year before we had to have this conversation about next drug and clinical trials. But every time I bring something untried up, it's Nope, not gonna help. Dr. is going to look into clinical trials and call us next week but I'm going to do my own research.
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials

RulaLenska
Posts: 20
Joined: Fri May 04, 2018 8:13 pm

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

Postby RulaLenska » Fri Oct 19, 2018 10:45 pm

Jack&KatiesMommy wrote: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

I too am MSS but with a low mutation burden. I have a variant on a PolE gene that has intrigued my oncologist since diagnosis and initial testing. The timing of my treatments has been very fortunate and that appears to continue. I’m healing from my liver resection and my latest CT shows 3 tiny tumors on my regrowth. Since I responded exquisitely to my previous chemo regimes (switched only due to side effects) we still have some of those in the tool kit. While these are still tiny we want to try Ketruda so my oncologist has applied for this. May need to appeal directly to pharmaceutical company as it will be off label. Onc says I could “ride this pony” for years if I respond. With minimal side effects. I will be treated with something in about a month. It may be Ketruda or Irinitecan/Vectibix . Two years ago I was very sick, not a candidate for surgery and very scared. Today I feel alive and hopeful and fortunate to be here. That being said...neuropathy REALLY sucks!
Cyn
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.


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