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Teri's Story

Died Friday, January 15, 1999. (See attached post at the end of the story)

3/93 Diagnosed with left sided IBC at age 32, Large mass virtually overnight, one small area of inflammation the size of a dime. I had 3 doses of CAF with initial response, but none after the second dose. Scans all clean, had a mediport put in. When pressed, Dr. A at Faulk CA center in Elmira, NY said I had about 18 months to live.

5/93 MRM w/ Tram reconstruction. 11+/15 nodes.

9/93 BMT with BM harvest, stem cell harvest, and 4 cycles of Taxol with neupogen, as induction cehmo. High dose chemo was thiotepa, cytoxin, and carboplatnum at Columbia Presbyterian in NYC. 21 day inpatient stay.

10/93 BMT #2 - same drugs. Only side effects nausea, diarrhea, fevers. 28 day stay.

1/94 finished 6 wks of radiation, nasty second degree burn, started on tamoxifen.

4/94 Case of shingles on left chest, found a "dent" in the right breast. Biopsy positive for breast CA - no inflammatory components.

5/94 MRM with free flap reconstruction from right thigh. 8+/12 nodes. Following surgery, found a small sesame seed like lesion found on left chest, biopsy showed breast cancer mets to the skin.

9/94 Finished 3 high doses of mitazantrone. The protocol included 3 more doses each of cytoxin and taxol, but bone marrow reserves burned out, blood counts took too long to recover from each dose, aborted the mission. No change in tiny skin lesion - surgically removed.

12/94 completed radiation on right chest. Started on Megace - gained 40# in 3 months time.

5/95 Found second skin lesion, started on 6 month course of Navelbine (given every two weeks)

1/96 Finished navelbine, started on zolodex hormonal treatment.

3/96 New skin lesions on left and now right side of chest. No more zolodex, started on arimidex hormonal treatment.

4/96 to 6/96 daily radiation plus taxol in small doses weekly to potentiate effects of radiation. Radiation got rid of most of the rash, still 3 tiny areas of concern.

8/96 3 areas positive for resistent breast ca at the skin.

9/96 Mutilating surgery to remove all the skin of the chest, the tissue and muscles underneath. Replaced by lattisimus dorsi muscles of the back and skin grafts taken from the butt and the thigh - very painful. Extremely ugly results after having such beautiful reconstructions, but healed fast, back to work full time as a nurse practitioner in 5 weeks.

12/96 started on taxotere - 6 planned doses prophylactically and Aredia for osteo (broke my arm twice in 2 years) Only enjoyed disease free status for a few weeks when a suspicious rash showed up on upper abdomen. Biopsied positive for breast ca mets to the skin. I am devastated, again.

2/97 Photo dynamic therapy through Roswell Park Cancer center in Buffalo. A drug called photofrin is given that makes the skin very light sensitive. A laser treatment is given 2 days later. Normal cells get 1st degree burn, cancer cells take up more of this drug and are really burned up. The first tx in 2/97 showed some benefit but still had the problem according to yet more biopsies.

5/1/97 second tx with PDT laser, they increased the dosage, resulted in 3rd degree burns from my rib cage to below my belly button and from side to side...very painful, taking enormous doses of morphine at home with no results. Finally was offered surgery to remove the 3rd degree burns and replace the skin with skin grafts from my left thigh. This was done not even 3 weeks ago and I am feeling healthy and fit right now but not back to my old activities yet. I have no skin mets right now.

During this agonizing period I was called and told that I was losing my job as a nurse practitioner at the VA because they are downsizing and 16 yrs there did not protect me. And the onc doc asked for a CAT scan of my lungs to follow up a case of pleurisy I had at Easter time. The lungs were fine but a shadow was found on the liver. I went to my knees with grief. The MRI of the liver confirmed that lesion and 7 others in the liver consistent with breast cancer mets to the liver.

That is where I am at. My onc doc in NYC is looking at the her2neu program out of Hackensac, NJ - a 4 hr ride for us. We should know more this week on that. If that takes longer than he is comfortable with, I will start on 5FU continuous infusion to hold me over. I have no symptoms. Come to think of it, I have never had any sx of cancer - only cancer treatment.

This is obviously not "my story" as there is no mention of my husband and 2 young daughters and they are my life. I have interpreted this entire disease in terms of my girls and what they might be thinking or experiencing.

I had a girlfriend die of this disease last yr when she was just 35. My onc doc, also hers, told me that when there is liver involvement the patient has 6-12 months to live with or without treatment. Now, of course, speaking with me about me, he does not want to be so blunt. He says there is a lot of variation in those numbers and he has one patient who has had liver mets for 5 yrs now. Of course, it is impossible to live without hope. I certainly pray that I, too, am the exception to the rule.


To: ibc@bestiary.com
Date: Wed, 20 Jan 1999 22:02:39 -0500

More from a friend of Teri:
I attended her funeral yesterday. Teri Johnson was 38 years old and had two beautiful daughters. The service was the celebration of a life too short, but well-lived.
If you saw Dateline last year about the herceptin trials, Teri was the youngest of the three women profiled. She was the one doing so well -- her liver mets had shrunk considerably.
Unfortunately, late this summer, Teri found out she had bone and brain mets as well. Despite more aggressive chemo, some trial therapies, continued herceptin & full brain radiation, the cancer finally took over and she died.
Teri was part of a women's cancer support group that I belong to as well. I have breast cancer too, but not inflammatory, and we began our struggles at around the same time. She was an inspiration to all the women there, no matter what type of cancer they had. We all admired her courage, her matter-of-fact attitude and her love of life. She will be sorely missed by her family & friends.
Posted for Teri's friend by Menya Wolfe

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