The Colon Club

boswind wrote: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.

My bar napkin math says you should have new CEA results todayish? What luck?

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 will have a CT scan before the next lab/infusion appointment. I currently have concerns and hope my case is not hyper progression.

boswind wrote: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 will have a CT scan before the next lab/infusion appointment. I currently have concerns and hope my case is not hyper progression.

I’m sorry about your CEA test, keep positive thought about your scan! My scan is mid/end of May, just after my text CEA test.

Boswind...I am praying that it is just taking a little time to kick in and that your scans will be good.

Cynthia

Just a thought about CEA chemo flares, the CEA flare ups lasted up to 4-6 months in the past literature with different chemo (5FU based). Although at 4 months the stress certainly builds up. Hope it breaks back to the low base line for you, soon.

rp1954 wrote:Just a thought about CEA chemo flares, the CEA flare ups lasted up to 4-6 months in the past literature with different chemo (5FU based). Although at 4 months the stress certainly builds up. Hope it breaks back to the low base line for you, soon.

I’m square in that stress, it is terrible. Do you mean previous articles from scientists/doctors when you say past literature?

Thank you all for your responses, which definitely reduce my stress level.

Pyro wrote:Do you mean previous articles from scientists/doctors when you say past literature?

Yes. But to deal my wife's situation I did several things. First, I worked on analysis of more secondary markers and panels, there were various ways to try to estimate cancer recurs vs other issues. Second, we got blood draws fairly frequently, in part for cancer monitoring, in part for other ongoing improvements. That last part, to add or change chemistry, is presumably more difficult with expensive new biologicals with more unknowns and side effects.

Jack&KatiesMommy wrote:chadwick1
My oncology team prepared an appeal to my insurance company and to Keytruda's manufacturer explaining the new evidence that there may be benefit to MSS colon cancer patients that have a high mutation burden. They worked with Foundation One (who had amassed a lot of data based on their testing and that helped. Bothe the drug company and my insurance company agreed to cover the drug's use in my case based on the appeal and the evidence submitted by my oncology team.

Hi there, were you given Keytruda at MSS with intermediate tumor burden? Thats what my mom has but everyone says it won't work for my mom. But she is MSS and has intermediate tumor burden with metastases to lung, liver, abdomen, and some lymph nodes. Can you please let me know?

I won’t speak for JKM but I was given it, I’m MSS with an intermediate tumor burden. Insurance wise, Merk is giving it to me for free, which means my Onc office has to pay for the time I spend in the infusion room, which is only 1/2 an hour for an infusion. My insurance (Medicare & TRICARE) doesn’t cover it, I think because the FDA hasn’t approved it for the likes of us. It’s worked for JKM, jury is still out on me, I’ll find out in a few weeks. It’s a shot in the dark, but works for some!

Well, my CEA was 30. I’ll take it, I’m not sure what it means except I don’t have to do chemo. Scans in 2 weeks!

That’s 3 tests in a row my CEA has been 30

Pyro wrote:Well, my CEA was 30. I’ll take it, I’m not sure what it means except I don’t have to do chemo. Scans in 2 weeks!

That’s 3 tests in a row my CEA has been 30

Nice. Sounds good. Scan is more important than CEA. Best of luck!

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) pain. Starting 2nd week I am having itchy rashes on my chest and back. By looking at the sheet of possible side effects the nurse gave to me, bone pain, muscle pain, rashes and itching all are possible side effects.

I get tired, very tired, and that’s about it for now. I expect more side effects in the future, I just live one day at a time. When’s your scan? Mines the 22nd.

I just wonder if anyone has done both Folfox and Ketruda at the same time and how bad is the side effects?
I have my crs/hipec done on April 3rd. The onset pci was 16. After the surgery, PCI is 1, part of the ileum wasn’t respectable. My onc wants me to start Folfox + Ketruda on 5/29. Then Folfox every 2 weeks, Ketruda every 3 weeks. I’m concerned my body might not ready for theses treatment yet. I lost 15bl since surgery and still losing weight. I just came out of full liquid diet this Monday. This was a setback due to bowel obstruction I had on 5/2 that landed me 4 days in hospital.
My CEA on 5/9 is 2.1. I really want to start with just Ketruda and see how I handle it. I have terrible neuropathies with Folfox last time but my onc wants to start strong.
Should I go with just Ketruda? Please advise. All feedbacks are greatly appreciate.
Thanks.