Herceptin w/either Navelbine or Xeloda

[Kathy S in Tokyo]

The Herceptin Taxol regimen I've been on since last June has dramatically shrunk the tumors in my lungs but a recent CT scan has uncovered a completely new tumor that has grown from zero to 1.8 cm in 3 months in the lower part of my right lung while I was on the regimen so it's farewell Taxol now. My oncologist spoke of continuing Herceptin for now (last ejection fraction was slightly decreased so I'm checking it again in two weeks to see if I can stay on Herceptin :-( ) and adding either Navelbine (injections) or Xeloda (orals, twice daily) and described all the side effects. He explained that the effectiveness of either of these is only about 20 percent and that Tykerb is currently on trial here but that he couldn't get me into the trial as they need indigenous (Japanese) data. He said he expected the Tykerb to be available for him to legally prescribe for me by December.

So...I'm leaning towards the oral Xeloda but would love to hear some opinions. Sigh.

[Pam P]

I was on herceptin/navelbine for 1 yr. It was fairly easy, but my wbc were always low so I would give myself neupogen shots for 3 days after each treatment. Some fatigue, some slight nausea.

I was on herceptin/xeloda for 2 1/2 yrs. Felt great. Lots of hand/foot syndrome, but learned to treat it & cope with it. No other side effects except for lots of diarrhea in the beginning, but that settled out. I loved the ease of taking it orally. Then I switched to xeloda / tykerb & was on that for another year. No additional side effects for me. On the xeloda I never felt like I was on chemo.

Sadly, xeloda/tykerb is not working for me now & I start taxol/avastin today.

I had good results with both the navelbine & xeloda. You have 2 good choices. Best of luck with whichever you do.

[Ceesun]

Yes, I was on herceptin with both xeloda and navelbine for over a year with very good results. Hope the same for you. Ceesun

[Carolyns]

Kathy,

I don't have an answer on your question but I have another one. Could or would your doctor prescribe Tykerb off trial? I was not in a trial and was able to get Tykerb as stage IV once Tykerb was approved in the US last March. Perhaps that is only in the US.

Good luck to you. I hope that whatever combo you end up using works on this pesky tumor quickly.

Carolyn

[swimangel72]

Kathy I'm taking Herceptin and Navelbine every two weeks right now - the only side effects are tiredness and diarrhea for the first 2-3 days - and I was told I won't experience hair loss. I can't give you any info about the effectiveness of this treatment - and I'm so sorry you have to deal with this nastiness! I'll be praying for you and your complete recovery!

[Sheila]

Hey Kathy
You are doing it opposite from the way I did it...I did the Herceptin /Xeloda for over a year until it quit working, then went to Taxol,Avastin, Herceptin, Then just the Taxol/Herceptin...now ending my break and going on Abraxane if the insurance approves (with Herceptin) or back on the Taxol w/herceptin...I found Xeloda very easy to take, and loved that it was pill form!!!! Some issues with hand/foot neuropathy, just wore flip flops alot! My friend is on Navelbine/Herceptin and she is doing great.....no hair loss like with Taxol, but she is really tired!
Hope this helps...keep us posted on the concoction they decide on!!!!!

[Kathy S in Tokyo]

My doctor is quite excited about Tykerb but can't give me any until it is approved by the Japanese medical authorities so I'll have to wait until December and hope that my heart function stays stable so I can stay on Herceptin until then. I sure wish he could slip me some sooner though. He was very apologetic that I didn't qualify for the trials here.

[Kathy S in Tokyo]

PamP - Thank you very much for the information and encouragement. Sorry to hear that the regimen no longer works for you. I hope that the Avastin/Taxol kicks in for you.

Hugs,

[Kathy S in Tokyo]

Sheila, I think we had our Taxol breaks at the same time - whoo hoo no steroids for almost a month! I stayed on Herceptin and just had a break from Taxol just for 3 weeks and then stopped the Taxol completely when I got the CT scan results on Tuesday.

I really appreciate all the experiences people are sharing here to help me make up my mind. Hope that the Abraxane works well for you.

Hugs,