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Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Mon May 14, 2018 4:04 pm
by Jack&KatiesMommy
Bschreibs
I am being treated by Dr. Kemeny at Memorial Sloan Kettering in NYC and by Dr. VanDeusen at the James Cancer Hopsital in Ohio locally. I am getting the off-label Keytruda through the James Cancer Center.
Cynthia

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Tue May 15, 2018 9:51 pm
by anitaw
Cynthia,
So sorry you are dealing with new mets. Thank you for posting this information. You are always an inspiration to me.
Anita

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Mon May 28, 2018 8:36 pm
by Jack&KatiesMommy
UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on this "experiment."

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Tue May 29, 2018 12:21 am
by henry123
Jack&KatiesMommy wrote:UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on this "experiment."


I think it can take upto 12 weeks before body starts responding even then there may be pseudo progression.
3 weeks is definitely too short a time to determine response.
Hang in there and visualise magic happening in your body as your new trained immune system destroys the bad cells.
Best of luck.

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Tue May 29, 2018 2:37 pm
by lpas
You're in my thoughts, Cynthia. Keeping fingers, toes and everything else crossed that a good response is still coming.

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Tue May 29, 2018 4:35 pm
by juliej
Jack&KatiesMommy wrote:UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on this "experiment."

Agree with other poster that 3 weeks is too short to know if it's working or not. I've known patients who had actual tumor growth :shock: for a few cycles before it kicked it. Give it time. Are you feeling well otherwise?

Sending prayers and good thoughts your way!
Juliej

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Tue May 29, 2018 5:13 pm
by stu
Hi ,
I know absolutely nothing about it but holding out for it to work ,
Take care,
Stu

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Tue May 29, 2018 11:53 pm
by Shana
Keeping good thoughts for you!

Hoping you see some promising results soon!

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Sat Jun 02, 2018 10:09 pm
by some808guy
Jack&KatiesMommy wrote:UPDATE: I had one treatment and 3 weeks later my CEA has gone from 39.4 to 60.1....so I am thinking that Keytruda is not working for me. I had my second treatment but I don't expect it to help. (MY oncologist said it may be too early to make that determination...). Just wanted to update you all on this "experiment."


Actually, CEA jump was a good sign for me when I first took keytruda. A CEA flare could mean that all those cancer cells are dying.

It leveled off after the second dose and scans did show it was working after that. So elevated CEA could mean it is working. Stay positive!

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Fri Jun 08, 2018 6:57 am
by Jack&KatiesMommy
UPDATE: two weeks after my second treatment of Keytruda (as an MSS patient with a moderate mutation burden) my CEA has gone from 60.1 down to 39.5!

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Fri Jun 08, 2018 7:05 am
by LPL
Jack&KatiesMommy wrote:UPDATE: two weeks after my second treatment of a Keytruda (as an MSS patientbwith a moderate mutation burden) my CEA has gone from 60.5 down to 39.5!

Wonderful news :)

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Fri Jun 08, 2018 7:55 am
by stu
Excellent news . Stu

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Fri Jun 08, 2018 8:32 am
by Robino1
Yay! Keep that number going D o w n ! :D

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Fri Jun 08, 2018 2:01 pm
by mariane
Wonderful!!! I keep my fingers crossed! :)

Re: Trying Keytruda Off-Label (MSS with a Twist)

Posted: Fri Jun 08, 2018 2:56 pm
by aja1121
So happy to see this update!