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Cannon · 03-14-2013, 06:49 PM

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

03-14-2013, 06:49 PM	#3
Cannon Senior Member Join Date: Oct 2007 Posts: 203	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.