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by boswind
Thu May 16, 2019 4:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

Based on the CT report and continuously rising CEA, my oncologist said Keytruda did not work on me. So I have to return to traditional chemos. I am now still in hospital to complete infusion of FOLFOX + Bevacizumab.
by boswind
Sun May 12, 2019 2:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

Any one who took or is taking Keytruda has noticeable side affects? After the first infusion I did not notice side effects. But after my third infusion (Apr 25), I had some noticeable side effects: Beside fatigue, during the first week after infusion, I had moderate bone (leg) pain and muscle (calf)...
by boswind
Sun Apr 28, 2019 1:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

Thank you all for your responses, which definitely reduce my stress level.
by boswind
Thu Apr 25, 2019 2:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

Today is a bad day. My CEA has gone up by over 26 points over last 3 weeks, while my previous CEA (3 weeks ago) went up by 22 points over 4 weeks. However, based on my doctor’s analysis on all results of my lab work and his suggestion, I decided to continue and completed Keytruda infusion today. I w...
by boswind
Sat Apr 06, 2019 8:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

@Pyro I read the following article posted on onclive.com: https://www.onclive.com/publications/Oncology-live/2019/vol-20-no-7/tumor-mutational-burden-poses-challenges-as-immunotherapy-biomarker It indicates TMB will be an challenging immunotherapy biomarker. Oncologists do not know if a specific pat...
by boswind
Sat Apr 06, 2019 1:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

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.
by boswind
Sun Mar 31, 2019 3:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

@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...
by boswind
Fri Mar 29, 2019 5:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pain and tingling of my left leg
Replies: 4
Views: 505

Re: Pain and tingling of my left leg

@boxhill I just noticed you started Keytruda on Dec/31/2018. How are things going?
by boswind
Fri Mar 29, 2019 5:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pain and tingling of my left leg
Replies: 4
Views: 505

Re: Pain and tingling of my left leg

@boxhill thank you very much. It took a while to figure it out. This week I had MRI scan on spine L4 and consulted a spine surgeon. The spine doctor did a few tests and found the pain on my leg is not from spine. 2 weeks ago I had an MRI CARDIC scan, which shows a clot around the catheter tip. That ...
by boswind
Tue Mar 26, 2019 2:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

@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.
by boswind
Mon Mar 25, 2019 2:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

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 ...
by boswind
Wed Mar 13, 2019 1:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

If you search clinicaltrials.gov with terms such as "TMB", “tumor mutation burden”, “tumor mutational burden”, “tumor mutation load”, or “tumor mutational load”, you will see quite a few TMB-H clinical trials that are on-going or to start. Unfortunately, there is only one trial in the US t...
by boswind
Tue Mar 12, 2019 3:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 128
Views: 27220

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

Cynthia, Thank you for creating this thread, which led me an opportunity to take Keytruda off label. I visited my Onc.'a office last week. He told me because it would take a week or so to complete the paper work with my insurance company I would have an infusion of Keytruda this Thur. Also, my onc. ...
by boswind
Mon Mar 11, 2019 2:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pain and tingling of my left leg
Replies: 4
Views: 505

Pain and tingling of my left leg

I have been on Irinotecan and Cetuximab for the last 13 months. For the recent two months I have felt moderate pain and tingling of my left leg while my right leg and arms are not effected. I'd like to know if any one has or had similar symptoms of pain and tingling. Now I have to take Ibuprofen and...

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