In Aug '98, when I met into my liver (multiple tumors) it was discovered then that I was HER2+ 80%, having been initially dx in '95, post menopausal age 50 ILC (more aggressive than ductal) w/2 out of 21 nodes involved. Now my fav onc (of 5 -- NY and Boca) took charge. Various recommendations for chemo but he wanted Taxotere. Why? What you have is a highly aggressive form of bc and T is the most aggressive weapon we have in our arsenal. I began T in Sept '98.
Herceptin was fast-tracked out of clinical trials as women in the genl population w/4th stage bc and told they only had 3 mnths to live could not gain access to H, but through a *lottery* system. Very limited supplies existed and were in trials at Sloan K and Boca (at my fav onc's office), only 2 places in the country then. Sept 28, 1998 H became available to the genl public. I was able to add it to my protocol as of Nov '98. TIMING IS EVERYTHING. I also began my major supplement regimen at that time, under the guidance of my oncological nutritionist who I lovingly refer to as my nut onc, as a dear Sister pointed out that he was.
Fav onc had me on ev 8 wk CT scans (chest/abd/pelv) w/ and w/o contrast. At the end of May '99 I was proclaimed in *cautious remission* by 2 out of 3 radiologists, and began H only, then wkly. In '01 I switched to the triple dose ev 3 wk plan.
Fav onc insisted I get ev 8 wk CT scans, per above, for over a yr. Then I graduated to ev 3 mnths for over another yr. Then I begged for ev 4 mnths b/c the contrast makes my IBS act up for 3 days following scans and I was chained to my toilet. He acquiesced a bit reluctantly but was firm that I could not go any longer between scans. It is only about 18 mnths ago that I was told I could go ev 6 mnths.
I'm told PETs aren't necessary for me. I know my TMs did not show elevation until mnths into Taxotere, mnths after dx recurrence. I still get TMs ev 3 mnths, knowing we can't rely on them in my case, but derive pleasure and encouragement in seeing that they are low, in the normal range, yet aware it is a false sense of security I am deriving.
I hope my experience can clarify your thinking in this cloudy area. I still hold my breath w/ea CT scan and get SAME DAY reports, often hrs after returning home. Paul and I seem to need this for our sanity, and we have made it a point of having our onc request this each and every time. When his nurse calls me and sings out -- Where do horses live? S T A B L E ... We laugh. Paul tears up with relief. And I thank God, all my oncs, my nut onc (who has given me my supplement list, meditation and guided imagery skills, my surgeons, my nurses , my husband and family and my Sisters, Christine and Joe). It takes a village... That's why we are all here.
Offered with love and prayers for every one on this board to join me in the STABLE,
Andi 
My Ct Scan Experience
Linear Mode
