Page 6 of 11

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

Posted: Mon Mar 25, 2019 1:19 pm
by Pyro
Well, had my first CEA test after 3 weeks of Keytruda, it went from 10 to 30, it's usually a good marker for me. Here is hoping it's psuedo progression!

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

Posted: Mon Mar 25, 2019 2:59 pm
by boswind
Pyro wrote:Well, had my first CEA test after 3 weeks of Keytruda, it went from 10 to 30, it's usually a good marker for me. Here is hoping it's psuedo progression!


Thank you for the info. I think it is psuedo progression.

I had first Keytruda infusion on Mar 14. I will have the CEA test on Apr 4 the day when I get the second Keytruda infusion.

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

Posted: Tue Mar 26, 2019 8:08 am
by Pyro
boswind wrote:
Pyro wrote:Well, had my first CEA test after 3 weeks of Keytruda, it went from 10 to 30, it's usually a good marker for me. Here is hoping it's psuedo progression!


Thank you for the info. I think it is psuedo progression.

I had first Keytruda infusion on Mar 14. I will have the CEA test on Apr 4 the day when I get the second Keytruda infusion.


Realize I'm MSS, doing this due to mutation burden. What do I do if it's real progression? I swore I'd never do chemo again, kind of let the Onc. Know that yesterday. I'm rethinking my stand, a little scared. My highest CEA test was taken a month after my diagnosis in 2015, when I had cancer everywhere, it was about 60. My tumor burden was about a 12.

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

Posted: Tue Mar 26, 2019 2:33 pm
by boswind
@Pyro I have the same concern as you do. I am willing to have Ketruda because I am against walll; no good alternatives remaining to me. I wish for the best.

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

Posted: Wed Mar 27, 2019 7:05 am
by Pyro
boswind wrote:@Pyro I have the same concern as you do. I am willing to have Ketruda because I am against walll; no good alternatives remaining to me. I wish for the best.


Well reading your signature I would say! I thought I had a lot of chemo at 77 rounds, you definitely have me beat. I didn’t totally use up FOLFURI yet but I really never want to go back to it, Onc. wants to just try vectibux if Keytruda fails, I might do that. I get it, I think some cancer patients don’t, not doing some available treatment will shorten your life as a stage 4 person, but I wasn’t really living on chemo, just suffering or recovering. I’m young with a wife and kids, some of these decisions are impossibly difficult. I hope Keytruda works, basically no side effects so far, but I know they’re coming.

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

Posted: Wed Mar 27, 2019 7:21 am
by brokenwings
Praying for you. I really hope Keytruda works for you.

Keep us posted.

Hugs,

Paola

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

Posted: Sun Mar 31, 2019 3:38 pm
by boswind
@Pyro
I searched info about psuedo-progression on line, and found it is not based on variation of the CEA; it is based on variation of tumor size and the symptoms. Simply speaking, during a chemo drug is newly applied, if after the tumors initially become larger and/or the number of tumors increases then the tumors shrink and/or some of them disappear, we say it is a psuedo progression.

If your old CEA stayed stable, after Keytruda started your CEA had a large jump, most likely Keytruda is working. As we know, elevated CEA is largely due to dead tumor cells. When Keytruda is killing tumor cells, more dead tumor cells in our body, which resulted in a jump in the CEA level. We call it CEA flares ?

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

Posted: Sun Mar 31, 2019 8:58 pm
by Jack&KatiesMommy
After my first treatment my CEA went from 39.6 to 66.4. Then 3 weeks later it went back to 39.2...and then it continued down after that.

Praying for both of you!

Cynthia

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

Posted: Sun Mar 31, 2019 9:01 pm
by Pyro
boswind wrote:@Pyro
I searched info about psuedo-progression on line, and found it is not based on variation of the CEA; it is based on variation of tumor size and the symptoms. Simply speaking, during a chemo drug is newly applied, if after the tumors initially become larger and/or the number of tumors increases then the tumors shrink and/or some of them disappear, we say it is a psuedo progression.

If your old CEA stayed stable, after Keytruda started your CEA had a large jump, most likely Keytruda is working. As we know, elevated CEA is largely due to dead tumor cells. When Keytruda is killing tumor cells, more dead tumor cells in our body, which resulted in a jump in the CEA level. We call it CEA flares ?


I thank you for your research, I had not seen that. Even better, you improved my evening.
Thanks to you JKM as well to drive it home

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

Posted: Tue Apr 02, 2019 9:37 pm
by Pyro
Went to the oncologist office today to pick something up, made mention of a cough, off I go to an X-ray. I think they’re serious about nipping keytruda side effects in the bud. No pneumonitis, wish those photos would show cancer or lack there of.

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

Posted: Sat Apr 06, 2019 1:20 pm
by boswind
My CEA went up a lot from 12 to 34:

Mar 7: CEA=12
Mar 14: Keytruda
Apr 4: CEA=34.2 & 2nd Keytruda given

Doctor did not say much about the CEA; he just said the drug for mCRC MSS was too new and they were learning; they will monitor my side-effects closely.

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

Posted: Sat Apr 06, 2019 3:07 pm
by boxhill
Not to rain on everyone's parade--I'm pinning my hopes on Keytruda too--I just read that 12 % of patients on Keytruda with a variety of cancers *seem* to experience hyperactivity of the cancer shortly after starting the regimen. And apparently they were not talking about false progression. The article I read mentioned that a group particularly affected seemed to be those with head and neck cancers, but gave no other specifics.

There is, however, disagreement about whether this is actually caused by immunotherapy.

https://www.cancertodaymag.org/Pages/ca ... lKqiAxTpAk

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

Posted: Sat Apr 06, 2019 6:56 pm
by Pyro
Well @boswind, I guess we are in this “progression” together. The hyperactivity could be from me removing chemo from my life, if the Keytruda isn’t working, I’d expect a veritable cancer farm inside me.

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

Posted: Sat Apr 06, 2019 8:00 pm
by boswind
@Pyro I read the following article posted on onclive.com:
https://www.onclive.com/publications/On ... -biomarker

It indicates TMB will be an challenging immunotherapy biomarker. Oncologists do not know if a specific patient with high TMB will respond to a PD-1/PD-L1 immunotherapy drug, although for a type of cancer the group with highest TMB has a highest response rate.

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

Posted: Sat Apr 06, 2019 9:03 pm
by Pyro
boswind wrote:@Pyro I read the following article posted on onclive.com:
https://www.onclive.com/publications/On ... -biomarker

It indicates TMB will be an challenging immunotherapy biomarker. Oncologists do not know if a specific patient with high TMB will respond do a PD-1/PD-L1 immunotherapy drug, although for a type of cancer the group with highest TMB has a highest response rate.


Thanks! I kind of expected it, if anything, I’m glad I’m not on chemo