Checking In and CEA Q

[Cannon]

Hi everyone, newbies and long-timers alike, and best wishes to all. I last checked in last year when I was diagnosed with severe cardiomyopathy - since then, I have seen more reports about long term cardiac herceptin effects. Bummer. Another happy little thing - early cataracts - no need for surgery yet, but 10-20 years early due to chemo. As I like to say, though, glad I'm here to have these problems.

Latest is my first abnormal TM level since treatment - my CEA was 0.9 in 11/12, and was 3.0 last week (norm 0-2.5 for non smokers). I know 3.0 is not HIGH, but like I said, I've never had an abnormal reading before. We're re-running the test, and I know from reading here that TMs are very individual in their predictive-ness for recurrence, but what can you tell me? Thanks for any input.

Rebecca
aka

[Laurel]

Cannot help you when it come to TMs, Rebecca, but I am curios to hear how your cardio is doing these days? Are you taking meds for the weaken heart muscle?

[Cannon]

Hi Laurel, love your kitty photo, looks like my Riker.

I was on a bunch of drugs for the cardiomyopathy, and honestly I can't remember what they all were. A diuretic, a blood pressure, and something else. My creatinine started going up because my kidney arteries were being impacted, my red blood count crashed and I had to have a transfusion of two units, blah blah blah.

Eventually I ended up hospitalized for acute pancreatitis this past January, and we pulled off a ton of drugs, mostly for Crohns but also for the heart. All I am taking now for the heart is carvedilol. I should be exercising of course but I'm still pretty tired all the time. And working, cut back to four days, and caring for my 21 yo son with autism, I think you get the picture.

I know a lot of people here take coq-10, oddly I am skeptical of supplements. I also am not sure the cardiomyopathy was from chemo and herceptin, because it came on very suddenly, 4+ years after I finished herceptin. The other possibility is virus, but apparently that is less likely. I did not do a muga post herceptin, but my ef was 53 in the middle of herceptin and well post adriamyocin. Who knows?

Rebecca