I need your opinion please

Joy · 06-13-2007, 03:24 PM

which is about all I got...I have heard the same thing from two oncs regarding markers and looking for solid trends i.e. doubling/tripling. I used them for years and they are accurate for me, BUT I could no longer mentally play the rollercoaster game. So I requested that either we don't use them and the doc was cool with that or I just don't pay much attention to what is being drawn anymore. The staff can have the numbers and I don't need them. It has helped my piece of mind quite a bit. I still am crazy from living with MBC, but my craziness is on a more even ride rather than the rollercoaster like before.

Thinking of you so much.

Adriana Mangus · 06-13-2007, 05:04 PM

Dear Joy: I hear you; most of us do not want to be bother with "Numbers" anymore. This is just from my perspective and my oncologist; Numbers do not matter as much as your energy level, and most importantly "how you feel"

This is me. I don't know that it will help you, but let me try.

No more CT scans, (except the yearly BRAIN MRI),
No more asking for the "number"

I simply go to my doctor, which I adore, I really do, -he's the coolest - everytime he comes into the examination room, he asks the same question: How are you doing Adriana? I always respond. Great!!! Then he would tell me the number which _I swear to God_ I pay no attention anymore! And that's the end of it.

This last time (around February), the tumor marker went up to 67 and I couldn't sleep, eat, nothing; was consummed day and night with the stupid number, so I decided to let my onc. do the "dance"

As long as am in agreement with wich treatment to follow, I nave no problem with it.

It's just too much Joy, I cannot do it - no more "numbers"..

Everything is in my head, that's what I keep telling myself. Pay no attention, but be good to your body and "listen" to your symptoms.

Good Bless You. Hang in there.

Odette · 06-13-2007, 05:46 PM

Oh Flori,

I see that you are worried. We do not like those markers going anywhere but down down down...
I tried googling margin of error and markers. I did not come up with a definite answer, but it seems like it is very possible that the rise in your numbers is within the margin of error of these kinds of tests.
I also see your logic of going back to the usual dose of Tykerb and maybe reduce it after a couple of months when you had good scans and good markers for a while.
I don't see anything wrong with calling your oncologist and telling him that you'd be more comfortable going back to the 5 Tykerb at least till your scans in July. The Xeloda dose is based on height and weight and you mentioned before that you are thin. Is it possible that he thinks the lower dose of Tykerb is appropriate for you because of that?

The way I (and probably most of us) feel: rather take some immediate discomfort then the anxiety about the future.
Wishing you good luck with your decision and sending GOOD SCANS/LOW MARKERS vibes your way.

Let us know what you'll do,
love and prayers,
Odette

PS. My onc does not even do markers, he just does not believe in them.