Please post your two cents on Herceptin "side effects" real or perceived!

[cvaughn]

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.

[Cif]

I was able to eat ALOT while on Herceptin, in fact since I could not sleep I ate at 2:30, 4:00, etc. to keep weight on (only part of whole ordeal that I liked). Had a month and a half off of everything between last Herceptin and tamoxifen, then once started tamoxifen I had to change cloths and sheets throughout night, and could gain 12+ pounds overnight (diet was down to 800 a day, no carbs, no cholesterol, basically not healthy just greens and sardines). I restricted fluid intake to 2 cups a day and lost the weight quickly with several sweat producing workouts a day. But even 6 oz of watermelon would result in 10 pound gain within hours. So I attribute it all to tamoxifen. I changed my tamoxife to 10mg am and 10 pm (split daily dose into 2 halves a day) and the weight over a few weeks melted off but still NO CARBS and still restrict fluid. I have been off tamoxifen for a week in prep for a surgery and I again can eat whatever I want, lost 12 pounds in a few days without trying, and SLEEP at night. The cruel part is nobody tells you that once lashes, hair, eyebrows grow back that you nearly lose them all again every three months (for how long this goes for I don't know, but top of my head and comb looks like I'm on chemo again.) Yes, folks can say that is due to the diet/fluid restrictions I had myself on to maintain weight, but it was done within nutrition guidelines and watchful eye. So between now and 2 weeks after surgery I'm going to eat out (but healthy) and enjoy this window of NORMAL. Co-survivors I asked also had the weight gain with Herceptin, but then again they didn't get the incredible near wheelchair needed pain and such from it either like I did, in fact I'm still trying to get brain, spelling, math, balance, etc. back. Weight gain, hair, nails is NOT from postmenopausal stuff ... it IS THE MEDS.