Oh PooP...Herceptin Holiday Over!

[Kim in CA]

I'm feeling a little less frustrated today.

I have my docs cell phone number, and hate to use it, but I phoned him yesterday to tell him that I was not happy about having to wait two weeks to get my Herceptin. He was actually at the hospital seeing patients, and sounded a little annoyed by my call. When I told him the scheduling dept. had me coming in on the 15th despite the fact he had written "ASAP" on my orders, he got more involved. I got a call late yesterday from scheduling saying they were changing my appt. to this Monday. Yeah!

I had already tried to see if I could get an appt. at another location, to no avail.

I will also be getting a PET/CT scan as well, to see what might be brewing inside me. I suspect it's in my abdomen though, cause a couple of weeks ago I started noticeing an unusual feeling of fullness whenever I eat anything. At least for now, I will be getting my Herceptin, and then we will add to it when we know what's going on.

I have become a very "squeaky wheel" when I know something isn't right, after my experience in 2001. I was so naive back then. When my tumor markers first became elevated in June of 2001, we waited a month and then rechecked them. I figured if anything was up they would give me a call.

Well somehow I slipped through the cracks, and by the time they called me to order further testing, and got the results of the scans and ultra sound, my liver was riddled with tumors. My CA15-3 had been at 48 in June, and by the time I started on my Herceptin and Taxotere at the end of September, they were over 1000 and it was getting difficult to button up my jeans!

I made my Doc promise he would never let this happen again, but sometimes I think he gets complacent because I've done so well for so long. You just can't ever let your guard down when it comes to this disease!

Also want to mention, that my doc didn't have much faith in the Her2 Serum test, but he is now rethinking that position. His experience with me is teaching him, that yes, some tests are very accurate, for certain people.

Thanks to this board I started requesting that test a few years ago, and it was the first marker to go up in my case. My Her2 Serum results have never been low, even when I was on Herceptin (usually between 11 and 15) so going off the Herceptin might not have been the best strategy. I really did enjoy the break though. My energy level seemed to really increase, and my finger nails have even gotten noticeably thicker!

Unfortunately, I've always said, when I'm feeling really good, I think my cancer starts to feel good too. At least I've always been able lead a pretty normal life while on the Herceptin and Femara. I will miss the extra energy I've had, the last year, but it's not going to stop me from staying active.

I'm still hoping to get my new young horse out on the trail soon, and maybe into some limited distance endurance rides at some point! :-)

[Jackie07]

Yes!

Glad your assertiveness helped get things moving!

[StephN]

Thanks, Kim, for the complete update.

You have things WELL in hand now that you got your nerve up to use the onc's cell number. That is why you have it - to use when you need him!

All the best for the scans to show a minimum of mets that you slap right back down.