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Stephanie Ambergrad@ol.com Print

POSTER WOMAN FOR TAXOL/NAVELBENE/HERCEPTIN

My name is Stephanie, age 54. I am a survivor of 3 years and 3 months from my original diagnosis. I had a small, but very lethal infiltrating ductal carcinoma. While taking a shower late one night in early October of 2000, I felt the lump with my soapy hand. Wishing not to alarm my sleeping husband, I did not say anything until we woke next morning. There was NO doubt in my intuitive mind that this was a "bad" lump. I have no real close family history and very few risk factors, but knew by then that was no guarantee of anything from the women I knew who had the disease. My mammogram had been negative 3 months earlier. But I have dense breast tissue and was being a little more vigilant.

It was a Friday and my GP squeezed me in for a late afternoon needle biopsy. He knows I do not alarm easily. As this was not conclusive, I had to have a surgical biopsy which actually got most of the tumor and pathology could proceed.

Here I am about to get my Vitamin H and Zometa in December of 2002. Left is one of the wonderful Seattle Cancer Care Alliance chaplains, Harriett. Me with hair actually covering my head (after 2nd loss), with nurse Marge, who often administered my cancer drugs.

Living in the greater Seattle area gave me a long list of possibilities for treatment options. I chose to get a second opinion at the University of Washington , and had been referred to a particular oncologist by a friend who has a lab at the famed Fred Hutchinson Cancer Center here. Not really getting the vibes I wanted from the surgeon on that team, I went back to my original (wonderful) surgeon for lumpectomy and later for the lower axilla (lymph nodes) and portacath implant.

My oncologist at the UW worked closely with the other surgeon and ordered breast MRI's (rodeo MRI - then very new) prior to the surgery. With a very high grade of Her-2/neu +++, he did not want to take chances. Then I even had a PET scan. This way my onc felt he could go forward with chemo with as much information as we could possibly get.

I had heard about herceptin by that time, and wanted badly to have this drug. My insurance would not pay for it unless a patient was stage IV and I was only considered about stage 2.5. I had 8 positive of 15 nodes. I could have joined a trial, but my onc wanted to know what I was getting and put me on weekly adriamycin (12 doses), followed by 4 doses of taxotere and a full 36 days of radiation.

I completed the chemo in June of 2000, and radiation on Aug. 30, 2000 . We celebrated with my family across the state over that Labor Day weekend. The October blood work, including tumor marker, were back in normal ranges. I had my life back.

The cancer was shifty and sneaky enough to have a few cells evade this aggressive treatment. I went in for a chest x-ray (was negative) and blood draw on Jan. 2, 2001 . Saw my doc a few day later. My right side had started to bother me just the weekend between the tests and the onc visit. I had no other pains or aches to speak of. My marker was elevated to 57 - not horrible. I told the doc about the pain in my side. When he palpated my abdomen I could see his face redden and biting his lower lip. Knowing what the normal sound was, I, too, could hear a difference and said so.

An abdominal scan was ordered ASAP. I waited for only about 2 hours to have it. By now the Seattle Cancer Care Alliance was in full swing in the new building and the docs don't have to compete with hospital patients to have tests done. Late that afternoon I had a call to come in at 8 am next day for a "worked in" appt. My husband and I were prepared for some bad news, but not as bad as we got! My liver was over 50% involved with tumors "too numerous to count." Spreading like wildfire. I was presented with one "option" (meaning NO choices). Participate in a new clinical trial for hard-to-treat metastases. I was #6 to enroll.

I signed the consent form and was sent upstairs to the infusion suite with chemo orders. My husband accompanying me, we approached the desk inside the suite to see what the "major domo" there would tell me. She said all the nurses were busy for another 2 hours and we would have to wait. All the nurses were looking at my husband and me with long faces, and one piped up and said she was not busy at the moment and would take me.

What a relief to sit down in that chair and get my port accessed! It was an amazing moment! (Actually comforting!) After being told just an hour before that I had probably less than a year to live (if you go by the available statistics) - I was going to get some lifesaving drugs and, if I had anything to say about it, they were going to work!!!

The trial was with taxol and navelbene, with herceptin added for my case. A dose intensification study -- meaning how much one woman can stand before they have to back it off. I actually kidded with the nurse about my "vitamin H" when it was time for herceptin. (It has been an ongoing joke since then!)

Next day I was back for a bone scan, and felt a little better in my side. The nurse case manager saw me and was surprised that I had such an immediate result. A scan in 4 weeks showed "remarkable" shrinkage of the larger tumors and some small ones had already disappeared! I stayed on this weekly protocol for close to 7 months. My CEA was normal after a while (another sign the drugs were working), even if my CA 27-29 was practically off the charts due to the neupogen. Those times were not easy, but I told everyone my body was on a "search and destroy" mission and I needed space.

A PET scan in July confirmed that the spots that were still visible were nothing more than places of dead tissue that my liver has since nearly cleaned out. This meant that I was the first one through this particular trial with a COMPLETE RESPONSE. It has been a difficult trial for most women to stay on and there are 3 or 4 more (out of 20 some) with results like mine. I heard lately this trial is on the "back burner" as it is hard to find qualified participants, since they have refined the requirements.

About 18 months have passed since my last chemo treatment. Every three weeks I go for infusions of "vitamin H" and Zometa. My tumor marker is checked at the same time. I know when a few days have passed and no call from my onc's nurse, that I have "passed" another "test." As time has gone on, I hardly notice those days. Just go on LIVING!

Celebrex was recommended ("I want YOU on it!") by my onc in July 2001, and I still take it religiously. I know there are vaccines being worked on here in town, but my onc says let's just stay with what is working until they get farther along. I agree.

I began working out with some other women cancer survivors a year ago, and have found this to be a very positive and encouraging experience as my strength and stamina have slowly rebuilt after that last blast of toxic stuff. Otherwise, I have more than enough to do with my life as I sit here today refusing to be a sick (only a little tired!) person.

Last Updated on Thursday, 21 January 2010 08:33