Re: T-DM1 & Pertuzumab: Still NED
 

CEA went up two points to 9. So, yes, I do have to have the brain MRI. OK. Over a two-week period the CEA went up 1.6 points. I am NED in the body. I don't know about the brain now. I have no symptoms (neither did a lot of other people, though, who did have them). So, sit an wait, like catching fish.
If there are brain mets, what should I expect? I heard the hair never grows back where radiation happened.
Thanks,
Karen

Re: T-DM1 & Pertuzumab: Still NED
 

Karen -
My rising CEA was the telling point that something was changing with my cancer. The other scans were turning up nothing and it was time for my annual brain screening anyway.

I had Gamma Knife and I have the same hair now as before the procedure. Don't think cyberknife affects your hair follacles either.

All the best for a good MRI.

Re: T-DM1 & Pertuzumab: Still NED
 

Thanks, Steph. This will be interesting. Did your CEA jump by a few points or by the tens? I, too, have the clean scans...that used to be enough for me. Last brain MRI was clean in December 2011, a prereq for the trial. Year before same.
Thanks
Karen

Re: T-DM1 & Pertuzumab: Still NED
 

Karen,

My tumor markers were useless, and my onc recently stopped doing them. I felt like my security blanket had been taken away, even though the markers have never been out of normal range with a recurrence twice in the lung and once in the brain.

My hair grew back after IMRT. I had a 2-inch round bald spot, but it wasn't noticeable because of the part in my hair. The bald spot was on the left, just back from the temple by about 2 inches. I'm not sure whether the hair grows back with WBR.

Praying for an unremarkable brain MRI.

Joan

Re: T-DM1 & Pertuzumab: Still NED
 

The drugs that are in the pipeline are being kept quiet from many. My spies tell me that there is a significant work in this area. The cancer therapy companies want to be the leader. Xeloda, Tykerb, TDM-1, etc. are all being evaluated to improve their effectiveness. All I can tell you is that there roughly 1/3 of the 240,000 BC newcomers are HER+. That is a big market for these companies. There are a bunch of pharm people out there trying to help this population. I can tell you that these are motivated people! The positive results that I read on this forum I send to a bunch of others. You are the inspiration for more than you know.

Re: T-DM1 & Pertuzumab: Still NED
 

Karen -
My CEA did not jump - just edged up a couple or 3 points at a time. When it reached 6, my med onc did a bone scan first as that was likely in many cases, then we did bloodwork a little more frequently. This process took more than 6 months.

Since I had no symptoms to point to brain mets, that annual screening was not moved up.

I am just glad that I had only the two tumors and nothing else.

Rolepaul - Glad we have accumulated enough people and info on this site that it has some clout after all these years!!!

I was out and driving the day after my Gamma Knife. I had a low dose of decadron that I weaned from fast.

Re: T-DM1 & Pertuzumab: Still NED
 

Hi karen! Great news that you are still NED!!! Praying that your brain scan will be a clean bill!

Re: T-DM1 & Pertuzumab: Still NED
 

Wonderful to hear!