Has anyone had success with herceptin alone?

[TriciaK]

I had no side effects with navelbine and herceptin 5 years ago, but with the new her2 mets in my lung, I am having some difficult side effects. Chelee had the same reactions with the navelbine, and I very much appreciated her comments. My oncologist cut the navelbine dosage 20% but I am still really uncomfortable and would like to try the herceptin without navelbine. I know my heart is not good, so I don't know how long I can do herceptin, but I would like to try doing it alone if possible. Have any of you had only herceptin and had success? I have the combo every week, and spend the rest of the week trying to recover, very weak, dizzy, throwing up, unable to eat anything, and having earaches and pounding heartbeat that keeps me awake. The good news is that my tumor marker (ca27/29) has dropped from 131 in May to 60 last week! That gives me hope, since tumor markers have always been reliable for me. Maybe we could do the navelbine every other week or so? Has anyone had these navelbine side effects and gotten over them with time? I always greatly appreciate any suggestions or experiences on this site and would be grateful for comments or suggestions now. Thank you! Hugs, TriciaK

[Barbara H.]

Hi Tricia,
I did not find Navelbine to be an easy drug, but I knew at the time that you had experienced success with it. I was diagnosed in 98 and went 6 years before I developed mets just about everywhere. I achieved NED quickly with Herceptin alone. My daughter was married two months after I was diagnosed, and my oncologist at the time wanted to make my life as easy as possible. I was able to continue my teaching and my quality of life. Unfortunately, after 1 1/2 years I developed bone mets and that is when I added Navelbine for about 9 months. At that point I had to have brain surgery for a suspected recurrence which turned out to be radiation necrosis. I eventually went off everything to become eligible for a weekly phase 1 TDM-1 trial that I started in Sept. 2007. That drug was a total miracle for me. My bone pain disappeared in two days and the treatment kept me NED for the two years I was on it. Unfortunately, and am currently the only one to develop a side effect of lung inflammation, and I had to go off of it in spite of the fact that it was still working. I have been on Herceptin/Tykerb for the past year and find it an easy combination. I continue to be NED and virtually have no side effects. I think that you should try Herceptin alone. If your markers begin to rise, perhaps you could add Tykerb. Quality of life is important, and I hope that Herceptin without Navelbine will work for you. However, Herceptin alone can also cause lung issues so that will need to be monitored. It is really unfortunate that the FDA denied TDM-1 and that it is not an option for you.

I wish you all the best and hope that Herceptin alone works for you.

Kind regards,
Barbara H.

[Rich66]

My mom had some stability on Herceptin alone for a while. When Navelbine was added, mom's counts went down and the onc was reluctant to use much neupogen...so ended up getting it in wildly varying schedules.
You could try cutting the Navelbine even further. There's not much info on getting that drug more or less metronomically but based on most of the information out there it might be a good option to try it weekly at much reduced dose....or every two weeks like you mention. Can you get Tykerb with it? Could try other chemos like Xeloda but sounds like you have some indication what you have going might be working. Are you getting the Navelbine at the same time each visit?

[Kathy T]

Tricia,
I had very good success with Herceptin and estrogen blockers alone for several years without disease progression. I hope the same for you.
Kathy T