[Marily]

I have been having CTC tests done each month for the past 6 months since stopping Herceptin. The normals run from 0 to 5. Up to this last month my numbers have been either 0 or 1. My Onc took me off Aromasin this past month because I have been taking pain meds to actually have a life, and he was worried since my kidney numbers are going goofy.He felt taking me off the Aromasin would give me less pain side effects.
(this is what happened this time so remember it can happen to you )
I had been waiting for the results and finally called in. I Was told they were on the Dr's desk because he wanted to review them before they called me. I called two days later and the nurse read me the report.
( Remember it is a test that very few know about and I have to tell them each time to order new tubes and what they look like.)
She told me I was now 7.8! HEARING this, I immediately left a note for the Dr (who was out till the next day) "Start me back on Herceptin now!!! I don't care if you put me in the hospital to do so." (I have had two bad reactions to Herceptin in the past)
I got a phone call back the next day and the nurse appologized for reading the wrong numbers. I was really at 0.
So either learn to read your own tests and have them faxed or be certain the person reporting the results knows how.
We had a pretty awful night!! I remained up all night reading and researching what we would have to do at this junction. My husband and son's were put through something that need not have happened.
On the funny side, my 93 year old Aunt who I told ONLY after the good results were KNOWN....said "that JUST is not fair" "I think you should have gone in and tripped that nurse"...lol...
I just replied: "Now after 8 years of this ... you learn to bend with the wind. It blows, we bend forward, and then begin putting ourselves back upright". I have no anger anymore..it is a waste.
I trust the test, but to back it up, every 3 months we do a ct/pet, and the "Bayer" her2 test is also repeated each month. These numbers are gradually climbing toward the high marker but.. I will greet that when the time comes.
I graph all my test numbers and feel it is a good way to keep watch. Hope this answers some of our questions.

good luck with your numbers

Marily