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Suzie's Story

Died Thursday, June 18th, 1998. (See attached note at the end of the story) My diagnosis of ibc came on a Friday the thirteenth, in August of 1993 when I was 50 years old. This rainy afternoon found us at the oncologist's office and a chemo combo of CAF (cytoxin, adriamyacin, and 5fu) was started 45 minutes after we arrived. When my husband and I left the office a few hours later, we saw the most gorgeous rainbow we could remember. The stress of a few weeks of uncertainty was suddenly lifted and dealing with treatment was easier than dealing with the unknown.

I immediately read all the pamphlets about diet and side effects but I didn't really want to know much about my "type" of cancer. I was concerned about dealing with the emotional side of cancer and maintaining my own personality. I didn't want to become the "patient" in our circle of friends and acquaintances.

Our 27 year old daughter had just been married 3 1/2 months and lived a world away in the California Bay Area. She became my researcher and plowed through libraries and the internet and gave me info as she thought I could use it. Within just a few days she was in NM being the marvelous care giver. She and her adorable husband didn't realize that the next 8 months would be filled with traveling back and forth (and Southwest Airlines wasn't giving frequent flyer miles at that point).

I had 4 rounds of CAF before a mrm that showed inflammatory tissue from the skin to the chest wall and 7+nodes of 11 taken. The high number of nodes indicated a more aggressive chemo than was available in my small town. I checked out the ABMT with high dose and rejected it for a number of reasons. The chemo was given in one shot, could not be repeated and the hospitalization was 8 wks in isolation. UNM was giving a clinical trial of high dose that described the chemo as 5 times normal dosage for cytoxin, cisplatin, and vp16. This was given in 3 rounds 5 wks apart - or whenever your counts recovered. The support system was a daily cbc with transfusions of red cells, platelets, neupogen shots, infusions of calcium, potassium, just fluids or anything else we needed. We all experienced wbc of 0.0 for 10-12 days each cycle so I figured that a lot of cancer cells were getting killed. My counts were pretty slow at recovering and this whole experience meant 8 months from surgery to radiation of the mrm scar.

Radiation was twice a day for 20 days and really quite easy since it was only a couple of blocks from home. Eight months after radiation was over, I noticed what looked like a delayed reaction. A pinkish sun burned splotch around the mrm scar. I was in the rad onc's office within 20 minutes and the two of us kept an eye on this for another 8 months before deciding on a biopsy. At the same time there was a very slight discoloration in a small arc around the areola of the other breast. Four biopsy spots all showed ibc, and I started Taxol the next day. This was called a local skin recurrence of ibc and a new primary ibc in the other breast.

I had 5 rounds of taxol/350 mg/21 days and it worked really well but the splotch was not totally gone. Time for another bit of an experiment and I had another 40 rads in 20 days on exactly the same tissue. Three days after finishing the rad I had the 6th taxol of 280mg. Within a week there was a real explosion of the skin (called a radiation recall) with much oozing, gooing, bleeding, crying, and a ton of pain pills. My adorable husband got really good at changing dressings and I managed to lay in the dark and stare into space for a couple of weeks. In an overnight miraculous manner, the area healed and we saw no more cancer. I think I could have maintained a bit more rational personality if I'd known there was light at the end of the tunnel.

Seven weeks after the last taxol, I noticed the other breast had the same arc shaped discoloration. Four docs in one day and a simple mast right then and I mean it really was simple. I stayed overnight since the surgery was after lunch, but a day later I went down to the Plaza for the ACS celebration of life. It was great to see all of the docs and nurses out supporting the patients. A few weeks later I started 40 rads in 20 days for the second mast scar. I began to think I had adopted the rad tech staff - we got very close.

A couple of days before the rad on the second breast was finished - DAH...DAH...the skin crud came back just outside the boundary of the original explosion area. (Much too close for more radiation and I had my limit of taxol due to some decreased heart function) I found a study on the internet about interferon and my dear onc was willing to try it. It was a dismal failure.

The next chemo was navelbine (with one dose of novantrone thrown in) and I started getting it once a week with 5 days of neupogen shots. (I was rather naive thinking my insurance would cover this expensive shot, but didn't find out the truth until after the navelbine was very successful.) Right before Christmas there was a terrific improvement in the redness, ridginess, and general activity of the skin crud. Later in January we discovered the cancer got wise to navelbine and started growing again.

5fu was chosen as the next chemo and I got it in a continual infusion - 24 hrs/day from a pump worn in a fanny pack. After a couple of weeks we added the drug, leucovorin which intensifies any side effects. After 26 days on the continual pump, I called "Uncle" due to a huge number of mouth sores and I got 3 wks to recover.

3/17/97 started mitomycin as an iv push and vinblastin in a continual pump for 4 days. (4 days I could live with) The plan is to aim for mito every 6 wks and velban every 3 wks. From the way my counts have crashed before, it was almost expected that my plan would be 4 and 8 wks. Neupogen was not considered since low platelets are as much of a problem with this combo as low white counts. After eating every fresh veggie in town my counts were the highest ever and I got velban at 3 wks.

I've known well over 50 ibc patients and only 4 have had this skin crud. Please do not feel that this is in anyway an inevitable part of your future. The skin stuff came back for the patients that I know within two years of their dx. The positive note is that people don't die from skin stuff and this is not considered life threatening. The flip side is that it can move quickly to a major organ and cause big problems. So far we can't document any one who has lived beyond the skin crud, but I think you'll see that change very soon. An ibc recur patient in Texas is part of the HER2/NEU trial and is experiencing success. Another recur patient in Illinois is having success with the PDT trial.

I don't qualify for either of these trials but have accepted the assignment to stay alive long enough to meet the "cure". My hero is Liz in Illinois who died last month, in March of 1997. She dealt with the skin stuff for 3 1/2 years and has set a real goal for me.

It's very important to assess all of your choices before beginning any tx for this recur. The PDT can not be done on skin that has already been radiated. The HER2/NEU trial is only for mets (but not bone) before getting chemo for the mets.

This journey of mine has not been as difficult as it might appear. The side effects for the past many chemos have been minimal, and I've even had hair for the better part of a year. Fatigue has been a normal companion, but also a marvelous excuse to avoid all housework, shopping, and especially stair climbing. (the laundry is in the basement) My life has changed a lot, but I wouldn't say it's changed in a negative way. I don't credit this crummy disease with giving me a daily appreciation of the many wonders in my life, but neither has it diminished the wonders of the love and joy that I experience.

I do feel driven with the goal of sharing hope for a positive future. I encourage posts from any patients or care givers who may just want to chat. You're invited to send your posts to the ibc list.


Subject: My mother's passing To: BREAST-CANCER@morgan.ucs.mun.ca
Dearest All,
I apologize for this late post regarding my mother, Suzie Storr's death last Thurs., June 18th. I have just now taken a breath. The out of down friends and family are gone. Peli (a list member and local friend) just called wondering where my post was.
Suffice it to say mother loved this list and the Inflammatory Breast Cancer List. Information and support carried her through much of this journey and when a list member died she cried as well as myself. We have been lurking on this list for 2.5 years. We have shed many tears. I lived in the Bay Area when I wasn't caring for my mother in New Mexico. We personally met so many wonderful list members. We both have enjoyed so many list friends. I will be writing you all privately. I promise. I just need to catch my breath.
Mom has a basic message to you all. Do not let her death slow the list down. Do not forget the newly diagnosed person. Console one another privately. Write publicly to hold up the newcomer, the person with the new recurrence, the latest crappy twist and turn in this bizarre cancer journey. You are all living now. Do not let cancer take away your soul before you die. Live and love and live and love. When this cancer stuff drags you into the depths of despair wrench your heart open and continue to live and love.
I am not going to sugar coat the final weeks of mom's life. She found herself unable to sit up or move her arms or hold a glass but she loved with her whole heart. Mother's final day was absolutely amazing. She knew she was going to die that day. She was in tremendous pain and it was time to move on. Friends and family began arriving to say their final goodbyes. The love was unbelievable. Our family priest sat a steady vigil. We had communion. We sang hymns. Breath on me breath of God was her favorite and I would sing it to her when the pain was especially awful. We loved and loved and loved. Finally I left the room to lay down in another. I had closed my eyes and thought I was daydreaming. She walked into my room healthy and fresh. She let me know the singing was going on. I let her know I was really tired and needed to sleep. She hugged me, said she loved me, and floated out the window. I opened my eyes to my aunt crying. Mother was gone. She had just died.
God I love her so much. We were the best of friends and I am so honored to be her daughter. She was only 55 and I am 30. She was such a cool person and I am so sad that we will not physically have many more years together. She will remain forever in my heart and soul.
My thoughts, good vibes, prayers go out to you all. I have not been able to keep up with the list and am currently not on it. Please write privately if you would like. (suziestorr@juno.com) This list carried my mother for many years. Thank you.
Sheralyn Storr

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