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by NHMike
Thu Mar 14, 2019 5:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 608
Views: 172307

Re: TIL Immunotherapy at NCI

You guys are pioneers in this treatment which I hope gets developed for far more mutations.
by NHMike
Wed Mar 13, 2019 11:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA Levels
Replies: 60
Views: 3862

Re: CEA Levels

Just left doctors office. I am MSS. So I am not a candidate for immunotherapy, which he mentioned when I asked about my genetic. He said he is not worried about lung met as he can use radiation for that but more concerned about local recurrence in pelvic area by rectum. Starting chemo next week thi...
by NHMike
Wed Mar 13, 2019 7:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA Levels
Replies: 60
Views: 3862

Re: CEA Levels

I have been exercising big time...training for my first 5k. I had a CT scan in Dec, but I will discuss this with him on Monday during my appt. That must feel great. I am running but work has been keeping my mileage down. I figured out that it was exercise as I did a chart of the CEA vs time and the...
by NHMike
Wed Mar 13, 2019 7:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA Levels
Replies: 60
Views: 3862

Re: CEA Levels

Mike...reference range is the same...the type of testing assay changed. I think that it would concern me then. The same thing happened to me and it eventually went above the normal range and the oncologist ordered a CT scan which found nothing. It later went down. I'm pretty sure that the rise in C...
by NHMike
Wed Mar 13, 2019 7:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA Levels
Replies: 60
Views: 3862

Re: CEA Levels

Just got my bloodwork back...cea went from 2.5 to 3.1. Not happy :evil: I go to Labcorp for my bloodwork and I noticed that the CEA test changed from "Roche methology" to "Roche Diagnostics Electrochemiluminescence Immunoassay (ECLIA)" Even though I am still in normal range, I a...
by NHMike
Tue Mar 12, 2019 4:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA Levels
Replies: 60
Views: 3862

Re: CEA Levels

Hi , We even have a clinical trial in our city for Immuotherapy with MSS patients !! My friend is having an amazing response with Keytruda for stage 4 lung cancer . Fifty percent reduction with just two cycles . Her fractured sternum has healed!! She has had it as first line treatment along with a ...
by NHMike
Tue Mar 12, 2019 11:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Marking time from first diagnosed or??
Replies: 10
Views: 339

Re: Marking time from first diagnosed or??

I'd say from NED and I'd guess that it would depend on your treatment protocol. I had Chemo + Radiation and then Surgery so for me, it would be the surgery date. I had Adjuvant Chemo but I'd still start the counter at surgery.
by NHMike
Tue Mar 12, 2019 11:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA Levels
Replies: 60
Views: 3862

Re: CEA Levels

Well Doctor called me last night around 8:30 PM....Not good news. Spot on Lung and in Pelvic region. I will get more information tomorrow and let you guys know. He will come up with a game plan, he did say this is still beatable. It's tough to digest this news as I was hoping to be done with it. Go...
by NHMike
Mon Mar 11, 2019 6:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coordination between oncologists - how to proceed?
Replies: 7
Views: 220

Re: Coordination between oncologists - how to proceed?

I started with a local oncologist and radiation guy and got second opinions from Dana Farber in Boston (an hour away). Dana Farber's recommendations were the same as the local doctors so we just went with the local doctors and the doctors didn't have any interactions. After treatment, I decided to g...
by NHMike
Fri Mar 08, 2019 8:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1419
Views: 276323

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

One thing about the beginning of the year that surprises me but it shouldn't. That is in paying the deductibles on medical costs. It may be $2,000, $4,000 or $7,000 but it's front-loaded into the beginning of the year. United Healthcare sent me a note on what I may owe so I expect the bills to roll ...
by NHMike
Fri Mar 08, 2019 5:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1419
Views: 276323

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

I played tennis for the first time in 1.5 years last Sunday and am scheduled to play again this Sunday. I am having obstruction bouts weekly and they are a headache but I'm managing through it. The LARs issues are still there but I think that the body is adapting very slowly. There are still days wi...
by NHMike
Fri Mar 08, 2019 1:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Just can't let it go
Replies: 31
Views: 1320

Re: Just can't let it go

It's possible that the entire report wasn't made available to you. I get path reports on my hospital portals but there was one time where the surgeon gave me a few photocopied pages of what was obviously the details of the pathology report - but those pages weren't available to me in the portal. I k...
by NHMike
Fri Mar 08, 2019 1:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Radiation tips for rectal cancer
Replies: 3
Views: 166

Re: Radiation tips for rectal cancer

I had a number of the problems though I don't think that I had any permanent problems - it was very painful but the painful stuff ended two weeks after the last treatment. One thing that I think is really important about limiting radiation to unwanted areas is to drink the recommended amount of wate...
by NHMike
Fri Mar 08, 2019 12:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Possible to survive this?
Replies: 8
Views: 669

Re: Possible to survive this?

This is the toughest of circumstances where it is hard to see a path. Perhaps a frank discussion with his oncologist would help? I have a friend in a chronic state (something that can be worse than cancer) and she doesn't expect to live more than a few months and she has prepared her children and ha...
by NHMike
Fri Mar 08, 2019 7:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Why you really need to know your tumor genetics
Replies: 21
Views: 721

Re: Why you really need to know your tumor genetics

I got the KRAS, BRAF, and dMMR results with my initial pathology report. Full genetic testing was done later. It looks like the approach is to look for the dangerous ones and if it's not one of those, then to run the full test. One of these days, the price of full testing will come down to the cost...

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