Her2 lung mets/what chemo?

Dear Her2 ladies - I have extensive "nodules" in both lungs and was wondering what, if any, treatment success stories any of you ladies have experienced and what chemo did you take besides herceptin? It seems as tho I have been thru everything (carboplat (allergic) taxotere, gemzar, avastin and most recently CPT 11. I would greatly appreciate any information any of you could provide regarding any luck you have had with other cocktails. Thanks so much - am getting nervous and anxious about this and would love to discuss any successful options with my Onc. CathyB in MD

[Lolly]

Cathy, my Her2+ friend with lung mets is now on Xeloda/Herceptin (for about 2 months now) and will have scans next month to check progress. But, she feels better and has had few if any side effects so far. I think some others here have tried Xeloda with varying responses.

<3,
Lolly

Dear Cathy,
I agree with Lolly's suggestion and I would also add Navelbine to the mix as it was originally used as a lung cancer drug. The navelbine / xeloda / herceptin coctail seems to be a very successful and effective one with many survivors. In terms of side effects, it isn't a particularily toxic mix. Another option is to get into a clinical trial such as Lapinitib (GWS572016). This drug has had some very exciting results.
Good luck,
Al

Although my lung mets was not as extensive as yours sounds - my drug combo was Herceptin and Navalbine.

That was 18 months ago and I am NED.

Peggy in Florida

I'm on Navelbine/Herceptin for lung mets. I was on for a year, and it put me in NED. Six months later it came back though, so we're trying it again. Haven't had a new scan yet, I go next week. Very few side effects.

Good luck, hope you find a combo that works.

San

Also on Navelbine/herceptin combo since early January.
Early March CT showed diminished nodes. I had several nodes,
all but one less than 1 cm. ,
but many symptoms, cough, asthma, fatigue.
My blood counts continue to stay in the norm.
I'm very fatigued, but my cough is gone, and the asthma is controlled
with very little medication at this point. I was hospitalized in December
for asthma for one week.

I was dx in March 2002 with innumerable lung mets again all less
than 1 cm. four rounds of AT, then lumpectomy, then four
rounds of Taxotere only with radiation, then six months of Herceptin.
I was in remission about one year without chemo, July 2003-04.
July 2002 until Aug 2004 CT if you add the Taxotere/Herceptin year.

My doc was thinking go back to Taxotere, but I had very low blood counts,
so he chose the Navelbine. BTW I'm 47, dx at 44.

Best wishes,
Susan M

a few ideas...

doxil, oxaliplatin with 5 fu ( or xeloda ) , a clinical trial. I was on the lapatinib trial for 4 months with extensive lung mets and did not do well. Navelbine and xeloda has also had good results. I am now on a drug used in primary lung cancer but has had some good results in bc, called Alimta . so far well tolerated and symptoms seem better but I have not yet been scanned.

Good luck!

I am also on Xeloda for lung mets. I had no success with Taxol/Gemzar. Carboplatin/taxotere/herceptin worked but cancer grew again while I was on Herceptin alone after that treatment. I get scanned in about a month and keeping my fingers crossed. I guess my next choice would be Abraxane. It's supposed to work for people who had no response to Taxol. My onc doesn't think much of Navelbine. Xeloda is great except I have "Hobbitt "palms and soles. Skin hasn't peeled off but feels thick. I had the neuropathy and my onc lowered my dose by 1000mg and it went away.

Navelbine and herceptin has worked so far for me. I was diagnosed with nodules in both lungs, but especially left, after 14 years ( BC 1985=double mastectomy; mets to spine, 1990, tamoxifen only, NED after 3 years; DX this time in July, 2004). I had extensive fluid (A liter full was pulled from my lungs). Was put on Navelbine and herceptin for 6 months, nodules began shrinking, no more fluid. Now on herceptin only and it appears there are only 3 very small nodules in left lung now. I will have evaluation this Friday, but feel pretty good and very little side effects, except loss of appetite for sugar and loss of 45 lbs, which was good. I did have a heart attack June 30, 2004, with 80% loss in one large vessel and 50% in a smaller one. It was a good thing, too, though as they discovered the cancer met to lungs because of it. It does give me a little concern about the herceptin's effect on the heart, but so far so good. This website helped me with information to make a decision to stay on the herceptin inspite of the heart problem. The cardiologist and oncologist think the cancer may eventually get under control enough so there can be a bypass on the heart. Oh, I am on femara by mouth, too. This website has been a Godsend to me, because I have learned so much from it and greatly value the wonderful people who share so much on it. Best wishes! Tricia

Cathy,
Oh, you must be so stressed out now; I hope our feedback is helping you. I had multiple mets to all 4 lobes of my lungs...after 8 months of navelbine and herceptin I was NED (in Nov 2004) and I have been on weekly maintenance doses of herceptin since. I have my next round of scans in May so will keep you posted...
Love Kim (from CT)