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

[Kroesen]

I have decided that one cannot tell what side effects are from which drugs. After working with an allergist and starting steroids and antihistamines, I figured out what gave me my skin reaction. I broke out an hour after they placed heparin in my port. It may not have been the Herceptin after all. So if there is anyone out there that is having similar issues, please don't right away focus on one med. Thanks for all of your responses. Two RADS left and then 6 more months of Herceptin.

[mbhamel]

I am 51 years old. I am getting many of the same symptoms in the previous posts here. Heavy legs, low back pain and tingling, very congested nose, slowed thinking and forgetfulness, night sweats not really sweating just terrible hot flashes waking me up in the middle of the night and can't sleep those only started since getting the Herceptin every 3 weeks. My nueropathy from the Taxol/Herceptin is still there in my hands and feet. My EF went from 62% when finishing AC down to 55% at my last echo. My oncologist called last week and said my Alkaline Phosphatase is also elevated and she wants to run some different blood tests when I come back to see her in three weeks. I just hope it's not mets to the liver or bones. I saw a couple of other posts saying that has happened to them and turned out to be not mets. I had my transplant surgery a week before that blood test so don't know if there was any meds in me from that still. I am thinking of asking my onc. to change it the Herceptin to every week to see if that makes a difference. But, I can live with it hoping the Herceptin is keeping the Cancer from spreading. I haven't had any scans or anything since last April so I'm keeping my fingers crossed and praying very hard.

Some other medications I am on is1mg of Ativan to help with the sleep issues. I have a script for 5mg of Hydrocodone but I took them very sparingly, Advair inhaler for Athsma, Fluctisone Nose Spray, and iron supplements.

[YNieves]

I was on Herceptin for a year, completed in 2010. 3 months later I had a rash on my chest which turned out to be local reoccurrence. I took Xeloda and Tykerb, I finished in the Xeloda on 8/2011 (and stayed on 1250mg of Tykerb daily. Most recent Petscan (1/2012) shows I have a 1.4cm lymph node on my axilla on the right side. All previous cancer was on left and chest wall. Onc. is thinking of putting me back on Herceptin and staying on the Tykerb. I am Ner 2 neu, Er/PR neg. My 1st Herceptin infusion, I had an anaphylactic reaction and was rushed to ER. I had to be desensitized to herceptin before I could accept it, 6 months later. Can all this posion in our bodies be making things worse.? I have had lumpectomy, mastectomy, radiation (twice) and hypothermia. Cytoxan, Taxotere, then adriamyacin and cytoxin. Herceptin for a year alone, then navelbine. Xeloda, Tykerb. Original Ca was DCIS in 2004. Cancer returned in 2009 as Her 2 neu. My side effects have been minimal on the tykerb alone. Very itchy dry skin on lower legs. Some fatigue. Rash around ankles (red spots?) I'll keep you posted once I start Herceptin/tykerb combo. Probably won't be till March.