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

Posted: Mon Apr 15, 2019 7:37 am
by Pyro
Well I get my 8 week blood test results today,probably followed my a scan. Cross your fingers, I don’t know what to do if it hasn’t worked.

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

Posted: Mon Apr 15, 2019 11:18 am
by brokenwings
Fingers crossed, wishing you the best.
Keep us updated.

Big hug

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

Posted: Mon Apr 15, 2019 11:22 am
by Jack&KatiesMommy
Praying for great results today!
Cynthia

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

Posted: Mon Apr 15, 2019 11:38 am
by LPL
Pyro wrote:Well I get my 8 week blood test results today,probably followed my a scan. Cross your fingers, I don’t know what to do if it hasn’t worked.

Best Wishes for you Pyro !
My fingers are crossed.

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

Posted: Mon Apr 15, 2019 3:00 pm
by Pyro
Well, it was 30. Didn’t expect that, went ahead with treatment. Thanks for thinking of me!

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

Posted: Mon Apr 15, 2019 3:35 pm
by Jack&KatiesMommy
Pyro:
It maybe on the downswing.....Mine did that a few times....it started to go up then stayed the same then went down. We thought that maybe it had continued to go up a bit then was coming down and we caught it on the downswing.

Next cycle will be telling. (Maybe you could ask your oncologist if you could get another CEA in say, 10 days....if you can't wait for 3 weeks. My oncologist did that for me at one point.)
Cynthia

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

Posted: Mon Apr 15, 2019 7:45 pm
by boswind
@Pyro, good trend!

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

Posted: Mon Apr 15, 2019 10:05 pm
by natelaugh
Pyro, hope it works!!

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

Posted: Tue Apr 16, 2019 11:56 pm
by Pyro70
Pyro wrote:Well, it was 30. Didn’t expect that, went ahead with treatment. Thanks for thinking of me!


Pyro, if you need more encouragement I recently heard Dr. Bekaii-Saab (who seems like one of the smartest CRC oncs to me) say that TMB is likely more important than MSI status.

And high tumor mutation burden I think is a much better predictor at the end of the day of response versus MSI-high on its own. So I think MSI-high is just a surrogate


https://www.onclive.com/inside-oncology/practical-approach-treatment-mCRC/refinement-of-techniques-and-the-future-of-mcrc

I think you’re on the right path. I hope your immune system is setting those rogue cells ablaze right now. Remember, immunotherapy can take a while to ramp up.

Best

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

Posted: Wed Apr 17, 2019 7:49 am
by Pyro
Thank you for the encouragement, it makes sense but I’m no scientist. My oncologist told me he was surprised, expecting a large jump in CEA, Awesome.

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

Posted: Wed Apr 17, 2019 8:01 am
by behconsult
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 MSS 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 last 7 years) my MSS 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, If I might add, I think it is amazing kindness and compassion that you reach out to members and educate them about this. Even I spoke with my onc about your posting. I am low mutation unfortunately, but many are not. Thank you

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

Posted: Wed Apr 17, 2019 8:19 am
by Pyro
Jack&KatiesMommy wrote:Pyro:
It maybe on the downswing.....Mine did that a few times....it started to go up then stayed the same then went down. We thought that maybe it had continued to go up a bit then was coming down and we caught it on the downswing.

Next cycle will be telling. (Maybe you could ask your oncologist if you could get another CEA in say, 10 days....if you can't wait for 3 weeks. My oncologist did that for me at one point.)
Cynthia

Thanks for your help, are your scans good as well? We’re you showing any activity when your CEA was high? My scan is mid-May. I don’t think I’ll get a CEA test 11 days early, it not like I really want to do chemo if it went up anyway, maybe not ever again.

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

Posted: Wed Apr 17, 2019 8:54 am
by Jack&KatiesMommy
behconsult wrote:
Cynthia, If I might add, I think it is amazing kindness and compassion that you reach out to members and educate them about this. Even I spoke with my onc about your posting. I am low mutation unfortunately, but many are not. Thank you


BUT....my oncologist said that if they had tested my original tumor (or even after 1-2 years of treatment) I may have been identified as having a low mutation burden. My oncologist believes that my MSS high Mutation Burden may be due in fact to all of the years of many different treatments and changes that occurred in the colon cancer in response to those treatments. I don't know what tumor tissue they sampled when they measured your TMB...but if it wasn't from a recent sample....I would wonder if it accurately reflects the current TMB of your cancer now.

Cynthia

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

Posted: Wed Apr 17, 2019 10:51 am
by Pyro70
Jack&KatiesMommy wrote:
behconsult wrote:
Cynthia, If I might add, I think it is amazing kindness and compassion that you reach out to members and educate them about this. Even I spoke with my onc about your posting. I am low mutation unfortunately, but many are not. Thank you


BUT....my oncologist said that if they had tested my original tumor (or even after 1-2 years of treatment) I may have been identified as having a low mutation burden. My oncologist believes that my MSS high Mutation Burden may be due in fact to all of the years of many different treatments and changes that occurred in the colon cancer in response to those treatments. I don't know what tumor tissue they sampled when they measured your TMB...but if it wasn't from a recent sample....I would wonder if it accurately reflects the current TMB of your cancer now.

Cynthia


That’s interesting. Pyro, how old was the tissue you had sequenced for TMB?

Thanks

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

Posted: Thu Apr 18, 2019 7:40 am
by Pyro
Pyro70 wrote:
Jack&KatiesMommy wrote:
behconsult wrote:
Cynthia, If I might add, I think it is amazing kindness and compassion that you reach out to members and educate them about this. Even I spoke with my onc about your posting. I am low mutation unfortunately, but many are not. Thank you


BUT....my oncologist said that if they had tested my original tumor (or even after 1-2 years of treatment) I may have been identified as having a low mutation burden. My oncologist believes that my MSS high Mutation Burden may be due in fact to all of the years of many different treatments and changes that occurred in the colon cancer in response to those treatments. I don't know what tumor tissue they sampled when they measured your TMB...but if it wasn't from a recent sample....I would wonder if it accurately reflects the current TMB of your cancer now.

Cynthia


That’s interesting. Pyro, how old was the tissue you had sequenced for TMB?

Thanks


My oncologist told me exactly what JKM was told about tumors changing over time, my samples were from my major colostomy procedure. I had been through a couple of surgeries and countless chemos by that point. Things could have changed, it’s a sample from Jan 2017.