Herceptin Heart Problems

HavahJ · 07-28-2006, 06:33 PM

Has anyone been taken off herceptin because of low mugas? What did you do?

Jackie · 07-28-2006, 06:52 PM

Havahj,

I was taken off of Herceptin after 6 months. My muga had dropped from 68 to 54. This is still in the normal range, but the drop was too much for comfort, and according to Genentech too much of a drop. I stayed off for 9 weeks (missed 2 treatments) then had another Muga and it was up to almost 57. I was then put back on Herceptin at only half the dose. We did this for 3 treatments and then another Muga and it was exactly the same as the last one. My onc. then increased my Herceptin some more, only half of the normal dose. The next one he increased some more....not full dose yet. I have one more treatment (in three weeks) before I will be finished with my year. I expect he will have this treatment at the full dose this time. We will wait and see. I asked if we would make up the treatments that I missed and he said no. I have a lot of confidence in my onc. He is highly regarded nation wide among other onc. even though he is in a small town. Hope everything goes well for you.

Carol.hope · 07-28-2006, 07:42 PM

Yes, I was taken off Herceptin. My first MUGA (in Feb.) was after 12 weekly doses and was 56% - ok to keep going. The second MUGA (in May), after 3 months of every-3-week Herceptin, was 35%, and I was told to stop Herceptin, stay active and have another MUGA in a month.

I kept exercising as much as possible, took CoQ10, Hawthorn, etc (under guidance of a Naturopath who has worked with a cancer clinic). Third MUGA (in June) was 66%. Oncologist and Cardiologist both say it's unusual to go down so far and up so quickly. Neither seemed interested in what I did to help things. Oncologist says I should not go back on Herceptin, "since we know how your heart responds to it."

I have a MUGA in Sept. to make sure it stayed up. I feel so much better now (almost 6 months after finishing Taxol), that I'm sure it's ok. The anxiety of all this definitely takes a toll. I am working on getting my positive attitude back, so I can heal better!

I'm counting on that study in which patients did well getting Herceptin for 9 weeks. It's just a guess how long is the best treatment.
I think we are the new data providers, those of us getting Herceptin for adjuvant therapy. More options are coming, so I think the future is optimistic for us.

Tell us your story, ok? Good luck! - Carol