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Old 05-08-2015, 06:55 AM   #667
cvaughn
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Join Date: May 2015
Location: Woodstock, Georgia
Posts: 4
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I had a postmenopause BC diagnosis at age 53. So I was 3 years into menopause when I began Chemo and Herceptin in 2013. I was immediately taken off of chemo as one treatment put me in ICU for 3 days, plus a 6 day hospitalization due to near Fatal Neutropenia. Supposedly, I was within hours of death per the doc. I was kept on Herceptin for 13 months. My last dose of Herceptin triggered an allergic reaction, which also sent me to the ER for treatment and release. I had to stay on steriods for 1 month following the Herceptin reaction. Herceptin will no longer be a treatment option for me in the future. Herceptin is not the "marshmallow" drug I think they'd like it to be perceived as. My doc would never blame Herceptin on anything, until my final dose when I was swollen up and covered with hives. She constantly would say that the drugs put me into menopause early, inwhich I would remind her that I was already 3 years into menopause. Where is the research on the postmenopausal women?

During my course of treatment: itching, severe body aches, vomiting, weight gain (not a hand to mouth issue either), nails rotting off, extreme fatigue, sleep issues, high cholesterol, the inability to keep eyelashes, and anxiety to name a few. I've been off for nearly 6 months and still have thin nails, fatigue, and weight issues.

Here is my biggest complaint....the weight issues. During my treatment, I ate a healthy low fat, low sugar diet and would walk 2 miles a day. Regardless, about 6 months into my treatment I started on what seemed like an overnight 12 pound weight gain. My concerns with my doctor were met with the "menopause" theory, but I was postmenopause. I managed to lose 10 pounds post Herceptin by major caloric restrictions and exercise. To maintain this weight loss, I've had to increase my exercising and continue to restrict caloric intake. My intake is way below my recommendations for my age and height, at 1550 per the Mayo Clinic. Maintaining my current weight is a nightmare and all consuming. Due to severe orthopedic issues from a car accident and degenerative joint disease, I'm not sure how long I can maintain current exercise routine. Plus, I need to keep my weight in check due to my skeletal and joint issues. The math does not add up for weight issues. It is like my metabolism was shot to death. My cholesterol is completely wigging out and my average daily intake is less than 200 mg a day. I majored in Nutrition in college, so I am very aware of what goes in my mouth. Very befuddling. I am greatful that I had the option of this treatment, but I would love it if the oncology community would start making some admissions on this drug.
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HER2/POS Stage 1 and mult DCIS May 2013
Bilateral Mastectomy July 2013
Chemo Aug 2013
Herceptin Aug 2013-Sept 2014
Near fatal Neutropenia (chemo discont)
BRCA1 negative
(5 cases of BC in family)
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