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03-13-2013, 07:29 PM
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#1
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Senior Member
Join Date: Oct 2007
Posts: 203
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Checking In and CEA Q
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
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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03-14-2013, 05:50 PM
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#2
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Checking In and CEA Q
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?
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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03-14-2013, 06:49 PM
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#3
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Senior Member
Join Date: Oct 2007
Posts: 203
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Re: Checking In and CEA Q
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
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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