As I stated in the last entry, this will be a post that is updated as information comes in about my health. If you found your way here, that means you read the last one and are somewhat interested in what’s going on. We appreciate that. The latest updates will always be on top, so they will essentially be in reverse order.

The first update was made on 8/4 and is the are six updates so far.

11/21/24

The CEA markers and Signatera numbers have increased substantially. I’ve been on the medication for two months now. It would seem that if the numbers don’t start reversing that we will need to try something different.

10/7/24

Had a PET scan done last Thursday (10/3). Our doctor (who is on vacation) emailed me to say “it looks stable” and “this is a great report.” Box checked. ✔️

9/25/24

We finally started treatment this month. An oral chemotherepy medication taken one week on and one week off. I’m currently on the second cycle. I started immunotherepy infusions a week ago and will be doing those every other week. This is the backup plan discussed in the 8/25 entry as insurance did not apporve the drug she preferred.

The most recent bloodwork included both Signatera and CEA. Both are up from previous levels. There is a PET scan scheduled for Thursday 10/3.

That is the data. As for me, I’m living my life and working harder than ever. The treatments and doctor visits are items on a to do list that are high priority. I’m staying active, eating healthy and camping every chance we get. I’ve lost another twenty pounds over the last five months, but only because I have gone on a very low carb diet – which is something I recommend to pretty much everyone. At the very least, you should consider cutting sugar and processed foods. Nothing good comes from those.

8/25/24

We saw the doctor and did bloodwork this past Wednesday 8/21. With the CEA rising (now up over 10), we will resume treatment in the next few weeks. The oral medication she prefers is still in pending status with the insurance company, but a final decision is due by 8/30. If it is not appoved, we will go bact to a regimin I was on at the beginning of the year that included immunotherepy infusions and an oral medication. Either way is fine with me.

8/9/24

We did bloodwork on Wednesday 8/7 and tested for CEA again. It was up to 8.0 from 6.3. While it’s not trending the way I would like it to, it’s good to have the information as a reminder to keep doing the right things right. The next appointment is on 8/21.

8/4/24

During our last visit to the oncologist on 7/24 we did blood tests, two of which give tumor related information. One was another Signatera. That level was 3.82 – Down 63% in six weeks from 10.42 on 6/12. The other was CEA. This one was actually the highest it’s been since April of last year. We came in at a 6.3. We had not done one since 5/29 and that one was 3.2. For some reference, We had been negative on Signatera in all tests leading up to 5/1. For CEA, the normal level is considered at or below 2.5 for non-smokers. We had not been testing for CEA as much since we started Signatera. The two done previously this year (3/20 & 5/29) were at my request. Below are images showing the results from every time I have had each tested previously.

My unprofessional interpretation is that the CEA would be elevated with the higher Signatera results. I would love to go back to see what they were on 6/12 when the Signatera was high, but what’s done is done. The good news is the decrease on the Signatera. With these results, I’ve asked the oncologist if we can start testing CEA every other week. The decrease in Signatera happened without any medicine being taken at all. But we only test that every six weeks as it’s done by a specialty lab. The CEA can be done with the rest of the local bloodwork. I want as much real time data as I can get my hands on.

The track that I’m on, organically, is beating this stuff down. While I’m ready, willing and able to take drugs, why do it if I don’t need to? Our doctor has agreed to the increased testing. Insurance has still not approved the oral medication she wants me on and she had been ready to put me back on the chemotherapy regimen I was on last year if it doesn’t get approved soon. In the meantime I am doubling down on the steps I’m taking to be healthy. That’s all for now. Thank you again for taking the time to read this.