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

[Christine MH-UK]

I find it really odd that many people seem to be treated as hypochondriacs even for known side effects. According to the European official packet insert for herceptin, in addition to heart problems:

"Other very common side effects of Herceptin, occurring in more than 10 out of 100 patients, are:

diarrhoea, weakness, skin rashes, chest pain, abdominal pain, joint pain, and muscle pain.

Other common side effects of Herceptin, occurring in less than 10 out of 100 patients, are:

allergic reactions, abnormal blood counts (anaemia, low platelet count and low white blood count), constipation, heartburn (dyspepsia), infections, inflammation of the breast, inflammation of the pancreas or liver, kidney disorders, increased muscle tone /tension (hypertonia), tremor, numbness or tingling of the fingers and toes, nail disorders, hair loss, inability to sleep (insomnia), sleepiness somnolence), nose bleeds, acne, itchiness, dry mouth and skin, dry or watery eyes, sweating, feeling weak and unwell, anxiety, depression, abnormal thinking, loss of appetite, weight loss, altered taste, asthma, lung disorders, back pain, neck pain, bone pain, leg cramps, haemorrhoids, bruises and arthritis.
Some of the side effects you experience may be due to your underlying breast cancer. If you receive Herceptin in combination with chemotherapy, some of them may also be due to the chemotherapy.

If you experience any of the side effects mentioned in this leaflet or notice any side effects not mentioned in this leaflet, please inform your doctor or pharmacist."

http://www.emea.eu.int/humandocs/Hum.../herceptin.htm

My story: diagnosed 10/2003, 6 FEC 75, mastectomy, 4 * taxotere, radiotherapy, not able to start herceptin until quite late 10/2005, a year after radiotherapy. ER-/PR-, so no further medicine besides three-weekly herceptin. Had my last period right before I started herceptin, although I think that's coincidence.

I have had constipation, nail disorders, inability to sleep, dry skin, sweating, feeling weak, bone pain (in odd places like my toes), and haemorrhoids. Tend to get weird headaches/sinus problems during the few days after the infusion. There are a few ladies on herceptin where I get treated and they all have some symptoms. I am having increased difficulty concentrating, but that doesn't seem to be on the list of known side effects.

Still, I will stay on it until October, but I must admit I am counting the treatments.