Not the best PET--Need to brainstorm options

[Mtngrl]

I had a PET scan that shows some local progression/recurrence. There are two little areas where the tumor used to be, and two lymph nodes in that side of my chest. The good news is there are no distant metastases that show up on a scan.

I live in Boston, which has three large cancer centers. My oncologist is going to convene a consultation with all three, and see what they say.

She's suggesting I try to get into a Lapatinib/Herceptin trial. Another idea is to try Xeloda with the Herceptin. I asked about doing chemo again and she was unenthusiastic. (So am I). I asked about Pertuzumab. There are no trials in Boston for which I qualify.

What are your thoughts?

[CoolBreeze]

Xeloda is chemo. I am not sure why she would suggest a chemo and then be unenthusiastic about chemo?

I see you are weakly positive (as am I) so the hormonals won't help you too much.

You are still on herceptin, yes?

[Mtngrl]

Yes, still on Herceptin. I got some today, in fact.

Xeloda is chemo, but not as broad-spectrum as, say, Abraxane.

I "am" Stage IV, but the only detectable cancer activity from the last 6 months has been at the original tumor site. Now there are the two lymph nodes, and that's new.

Or maybe not. Scans are just snapshots. We don't really know exactly what's going on between times.

Lapatinib targets another chemical pathway of the HER-2 protein. If I get into the Lapatinib trial I'll go off the Arimidex.

[DeenaH]

My computer didn't post my reply from earlier! Is there a reason she won't just prescribe Tykerb with your Herceptin. Why would she suggest a trial when it is already approved as a combo? I have been on the 2 together for almost 1 1/2 years.

Other than that, the other options are chemos (like Xeloda). Many are much less harsh than Taxol and Abraxane.

[Mtngrl]

Tell me about Tykerb.

[DeenaH]

Going off of Arimidex to do a trial for an approved drug doesn't make sense to me. I would ask your doctor to just prescribe Lapatinib (Tykerb) along with Herceptin and Arimidex. Why not hit it from as many different directions as you can?

[DeenaH]

Tykerb and Lapatinib are one in the same.

[Mtngrl]

Oh, I get it. Thanks Deena.

Yes, that makes sense. I'll follow up.

Much obliged.

[ElaineM]

Tykerb (Lapatinib), Herceptin and Arimidex or Femara sounds like a good plan.
Petuzamab might be approved as early as this summer if the FDA is nice to the drug company that made it. The FDA is already reviewing the Petuzamab evidence.
We also have a fingers crossed for a TDM1 approval by the end of this year.
Good luck. Take good care of yourself.

[bevilj]

Hi, Sorry to read that you have progression and are in need of a different treatment plan. I read the other entries about Tykerb and Xeloda and wanted to share some details about both as I have had both in my treatment.

I was on Xeloda, Herceptin, and Zometa for almost a year. The Xeloda kept me stable for quite awhile. And while it is a chemo, it was not as 'harsh' as the IV chemo I had been on previously. My onc recommended Xeloda for my situation because my progression at the time was not too far along. It offered me a good option while keeping some of the more aggressive options in my back pocket for future needs. I experienced just about every side effect on the list of possibilities to varying degrees but was still able to work part-time, ski, hike 14,000 ft mountains, etc.

After Xeloda stopped working, we added Tykerb to the mix. I was on the T & X combo (still always Herceptin and Zometa) for a few months but couldn't handle the side effects. I lost weight, lost energy and was just plain miserable for weeks. But, it was working! So, after much consideration, I stopped the Xeloda and am now on Tykerb. I still have side effects but am getting back to feeling like my old self (that is the old self on Xeloda, not pre cancer). Tykerb seems to be working great on it's own also.

I'm not sure why the trial is being talked about by your onc at this point but I'm sure there is a good reason. Given that Tykerb is already available, I encourage you to ask about the difference between taking the pills on the trial and independant of the trial. Maybe it's the same but the trial offers the medical community more insight into the treatment?

I wish you well in your treatment plan decision. The good news is that there are several options out there. You can pick one now and use another later, should you need to.

All my best, Jen