HER2 Support Group Forums - View Single Post - Please post your two cents on Herceptin "side effects" real or perceived!

Mary L · 11-15-2010, 07:39 AM

I was on herceptin every other week for 5 years only taking breaks when my muga showed problems. I have the hot flashes all the time, joint pain, especially in my knees, my hair was very thick and now is thin and limp. My chemo fog is really bad and I forget what I'm saying in the middle of a sentence. I suffer from post nasal drip/cough everyday of my life. My nails are much improved. I suffer from fatigue and take Ginsana for that but I really don't have much energy. I gained 10 lbs but thankfully I was slim when I got my cancer. I have not lost it as I always am hungry between meals and snack. I have very bad neuropathy in both hands and feet. I also am getting cold sores on my lips. Never had that problem before. I had 5 years of red, dry eyes. I always looked like I had pinkeye. That went away after I stopped herceptin. I have been off herceptin for 3 years and I still have most of the side afftects. If I had not received the herceptin, I wouldn't be hear so I guess I can live with them. Mary L

11-15-2010, 07:39 AM	#527
Mary L Senior Member Join Date: Nov 2010 Location: PA Posts: 297	Re: Please post your two cents on Herceptin "side effects" real or perceived! I was on herceptin every other week for 5 years only taking breaks when my muga showed problems. I have the hot flashes all the time, joint pain, especially in my knees, my hair was very thick and now is thin and limp. My chemo fog is really bad and I forget what I'm saying in the middle of a sentence. I suffer from post nasal drip/cough everyday of my life. My nails are much improved. I suffer from fatigue and take Ginsana for that but I really don't have much energy. I gained 10 lbs but thankfully I was slim when I got my cancer. I have not lost it as I always am hungry between meals and snack. I have very bad neuropathy in both hands and feet. I also am getting cold sores on my lips. Never had that problem before. I had 5 years of red, dry eyes. I always looked like I had pinkeye. That went away after I stopped herceptin. I have been off herceptin for 3 years and I still have most of the side afftects. If I had not received the herceptin, I wouldn't be hear so I guess I can live with them. Mary L __________________ Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.