How long have you Navelbine/Herceptin people been on it?

[al from Canada]

Hi Kathy,
Lind has been on Navelbine for the last 3 month, once a week. The doctors are looking at putting her on it 3X month for the next 3 months to see if we can't help out the blood counts. This is the one thing about Navilbine, Linda is now also on Neupogen + Eprex for the low blood counts.They said they pln on putting her on straight herceptine after the next 3 months but my comfort level with that is very low. I am looking for something like Herceptine + Avastin. Two years?, sound excessive but if it is working? Would you consider getting brain mets a failure of the chemo protocol? That has to be weighted with your descision to continue. If you stay on it until the disease progresses, herceptine only obviously would help. If the disease does progress, there are lots of drugs in the chemo arsenal the doctors can call upon.
I don't know if this helps,
Al

[Lisa]

Ah, yes, if only chemo prevented brain mets. I was on Navelbine/Herceptin AND Zometa for the bone mets for 9 months. Weekly for 3, then bi-weekly for the Navelbine for 6. Now on Herceptin every 3 weeks. And now on WBR for brain mets. I can't imagine being on a chemo regimen for 2 years. In fact, I've never heard of one that long! What do the scans say about your bone mets? Are you on Zometa or some similar drug that is designed specifically to help bone mets?

Love and light,

Lisa

[Kathy]

I have been on Navelbine/Herceptin every week for 2 yrs with control of the bone mets but I did suffer a brain mets. I hear you guys saying you were only on the Navelbine until NED. I'm not sure if I should be off it and just on the Herceptin. My onc says I will be on it until I can't tolerate it or the disease progresses. Should I be thinking about something else. Thanks for all you experience and knowledge. Kathy

[Kathy]

Thanks for responding. I'm on Zometa and have been monthly. I'm on femara and Lupron for hormone control. My last bone scan and chest CT a month ago were stable with no new disease. Since the WBR and Gamma Knife, I am so weak and tired that I have virtually no life. Just wondering if other people are kept on Navelbine so long?
Kathy

[Jackie]

I started on navelbine/herceptin wkly, with zometa monthly, in July, 2003, for mets to bones and skin. Navelbine quit working in Jan 04 and I switched to gemzar in Feb 04. Developed brain mets this summer and had gamma knife. I also had a lot of trouble with fatigue this summer and skipped some chemo treatments, then began a program of every 2 wks. Too early to assess the effect, but I feel a lot better, so I hope there are no problems. Good luck to you!
Love, Jackie

[Kathy]

Thanks for responding. I'm on Zometa and have been monthly. I'm on femara and Lupron for hormone control. My last bone scan and chest CT a month ago were stable with no new disease. Since the WBR and Gamma Knife, I am so weak and tired that I have virtually no life. Just wondering if other people are kept on Navelbine so long?
Kathy

[Pam P]

Kathy -- I have been on navelbine/herceptin (3 weeks on, one week off) for 8 months for bone mets. I have not acheived NED & don't know how long I'll be on this treatment. I guess, like you said, until it doesn't work. Luckily, this drug has been easy for me to tolerate. How about you?

[al from Canada]

The navelbine is knocking the crap out of my wife's blood counts. As well, she is always tired, fatigued, anemic and sleeps a lot. She take 6 shots of neupogen and one Eprex between each treatment. She has been on it for 3 months and the plan is to reduce her dosage from 1 X week to 3 X / month for another 3 months. Who know after then??
Take care,
Al