Herceptin - Page 2

StephN · 07-06-2007, 11:42 AM

Hi Idi -
As you post more we can certainly see that you have been a very fine advocate for your husband for a long time.

Now that I have a "geographic fix" for you I want to make one other suggestion. Have you seen Dr. Edith Perez at Mayo's in Jacksonville? Look her up. She has done incredible cutting ege research on Herceptin. I have heard her speak at a couple of international conferences. I am not sure how many patients she sees, but I think she might be interested in your husband's case.

Also, since your hubby's mets are in his bones, I am wondering what is being done for those. Would a bone strengthener be out of the question with his liver situation? I have not researched biphosponates and liver transplant, but this question must be raised.

Yes, we are here because we do care, and want to give back - as there are so few people who really understand all we BC survivors go through and the complicated lives we now live.

MarilliM · 07-06-2007, 12:25 PM

Hi StephN - Yes, we actually had an appointment with Dr. Perez years ago, when we got there she was out and we met with another doctor. He basically agreed with what we were doing up to that point. However, I just emailed Mayo Clinic hoping Dr. Perez gets it. He also has been on Zometa (bone strengthener for years) however, his Oncologist took him off of it because his Alkaline Phosphate was always low between (70-80) and he felt like he didn't need it, so he hasn't had that for at least six months. I don't know if this was the right thing to do or not. His Oncologist is affiliated with Moffitt so we never went there. Even his Liver Transplant Surgeon switched his rejection medication to Rapamune, which is supposed to slow down cancer. It is actually being used at St Jude for the children, however, he had a reaction to it so they put him back on his original medication. Like I said, he has had everything except for Chemo. The reason Herceptin came up because it isn't a chemo, however, from what I read here it sure seems to have some unpleasant side effects. I do thank you for your time, you ladies are really wonderful. I have done so much research and asked so many questions, that, well I think it is getting to me since I really haven't accomplished much. I sure have met some really nice people here on these boards along the way. Wishing you the very best. Idi