Herceptin

I have taken 2 treatments of Herceptin by itself. After the first treatment I had difficulty urinating and later developed a serious UTI. The second treatment I am experiencing terrible joint and muscle pain as well as generalized swelling. I have also developed numbness of the toes and some fingers. I am really not feeling well. My port site hurts as well.

Has anyone else felt these things? I am not on any chemo (finished with that June 2). I am only taking Herceptin and did not feel like this prior to taking it.


I am so afraid to take more Herceptin, but I am equally afraid not to take it.

Ah Jeaneen, I am so sorry to hear this I have heard these can be the side effects but for the people having to take this it must be terrible to suffer from pain and feel so bad.

How long for do you have to take it?

1 yr is the length of time for Herceptin. I saw the doctor today. He suggested that the numbness may be delayed response to Taxol, the swelling from Herceptin, and plans to research further the muscle/joint pain as a side effect (he acknowledged that it is a side effect and might be lessened with weekly treatments instead of every 3 weeks). He cancelled my next Herceptin this week and I may go to weekly tx. I see him again in one week. He was very kind and understanding, which REALLY helps. He also suggested Lasix.

From reading other forums, it appears that the joint/muscle pain is a side effect of Herceptin. I get stiffer as the day goes on. I could not even get out of the bed without help this weekend. I want so much to just be normal again and do what I am suppose to do. I am tired of feeling like I am bothersome and whiney!! It helps to know others are going through this, that what you feel is valid.

Jeaneen it is good your doctor is understanding - that way you can be sure he is doing his best to make your suffering lighter. I am sorry you have to go through all that and understand of course you'd want it to disappear. I don't think you are bothersome and whiney and I doubt anyone thinks so. It is a rough deal you are going through and you most certainly aren't doing it because you choose it that way.

Hi Jeaneen,

I have been on Herceptin since September 2007 every 3 weeks. I have bilateral hip pain constantly and is worse after sitting for a long time. I did find that the bone pain became worse after receiving chemo (Taxotere and Cytoxan). It was so bad, my doctor did a bone scan to be sure cancer had not spread. I find it tolerable with Advil or Tylenol and hot baths a night. I definitely think you should continue. I have another whole year and my doctor said if research proves 3 years is best, then I have another 2 years left. Exercise is really best while going through treatment. I want to live! A little bone pain and bladder problems is better than not being here on earth.

Dear Friend, Yes I have felt the same way when I was going threw the same. Try and find out what herbs and vitamans you can take while you are going threw this. I also found some pain patches that helped too. Most of all please take care and know you are not alone. I have other things you can try if these do not help. God bless you. Hang on and know you can do it, Hugs, Debbie

alebean I just wanted to say "welcome to the forum" - and that I am glad you joined it.

Also, thank you very -very- much for sharing your knowledge and experience. It can't be easy, I know. I wish you health, 100%.