White Plains, NY
1935 / Class of '93 / Type: IgG / Tandem transplant, Interferon / Died 8-27-08
I grew up in Brooklyn in a low not quite middle class neighborhood. Excellent health before diagnosis. Had a cornea transplant, but no major surgery or illnesses, tended to get bronchitis, even as a child. Always exercised; at age 40 started jogging and completed three marathons. Was still jogging at diagnosis. Only "clue" may have been an upper respiratory infection in July of the year I was diagnosed. It was strange to get bronchitis in July. Local hem-onc is at the Scarsdale Medical Group--Mark Fialk. Seeing Dr. Jagganath as super doc now at St. Vincent's.
Diagnosed in Nov. 1993 during a regular physical; was referred to Little Rock in Dec. 1993 for consultation and/or treatment. Bone marrow plasma cells of about 21% (one report said 25-30%), IgG monoclonal protein of 3.6g%, serum M 2.5. B2M 1.3. No Bence-Jones, no bone lesions. I think I had the following treatment, including two autologous transplants. VAD times 4. High dose cyclophosphamide plus GM-CSF, EDAP plus GM-CSF, Melphalan. Medication included Cipro (other drugs to protect my stomach, etc.)
Stem cells were "excellent" There are still enough stored for a third transplant (although I don't think I'd do one). Bone marrow was extracted and stored as well. First transplant was done outpatient--the usual minor problems--fever, infection, edema, etc. Second transplant was in hospital. I think Cytoxan was given for both transplants. The second transplant was more difficult--slower recovery; infections, thrush. In both cases, I was home in a bit less than one month. I would say full treatment and recovery took about a year and a half. However, I worked a good deal of the time during the treatment, especially during the VAD. Had some problems with the catheters--infections, etc.
The decision was made not to do total body radiation, for which I am thankful. We discussed it, and agreed it might not be necessary. Clearly the treatment was heavy duty; many would have opted to wait. I have no regrets. Fatigue is still fairly constant; my early retirement was based directly on the mm. My job was too stressful, and working in an environment with literally hundreds of students in the building daily probably wouldn't have been good for my immune system.
September, 2000: Dr. Jagannath and I agreed to stop Interferon after four years. Two years later, we stopped the Aredia. I felt much better--more energy, less feeling of ennui, etc. There have been no substantive changes in my numbers since then. IgG is in the normal range. Serum M varies from 0.4 to 0.7. The only treatment I'm now on is Aredia.
The major shock occurred this April when after a routine mammography I was asked to have more film taken. Results of the mammographies, examinations, and biopsies were a double mastectomy. There is evidently no connection with the Myeloma. Nevertheless, it has been a very difficult time. Because of the heavy chemo I had had during the transplants, consultations with Dr. Jagganath, Dr. Klein at St Vincent's, the tumor board at St. Vincent's, and Dr. Fialk, my local oncologist, the decision was made to go for 4 sessions of Taxol. More side effects than I had expected--neuropathy, and muscle and bone pain.
April, 2004: As of now, except for an M-spike of 0.5, which has not changed in nine years, I'm fine. It's nearly four years since the double mastectomy and Taxol treatments. I will be on Arimidex for another year.
2005: In the meantime, I've written a book, which was published in May 2005. When I was diagnosed with Multiple Myeloma, a few people made comments which, though not meant to hurt, were inappropriate. I forgot about those words. However, when I was diagnosed with breast cancer, others made comments that should have remained unsaid. Each person knew me well and meant no harm.
I realized that when it comes to cancer, people often don't know what to do or say. I began research and found one or two articles on the topic of how to speak to cancer patients, but no books. I coined the term cancer etiquette. In the course of two years, I read more than 30 books and more than that many articles, interviewed many, many folks, and received e-mails from across the country.
The result, Cancer Etiquette -- What to Say To -- What to Do For -- Someone You Know or Love Who Has Cancer (published by Lion Books) is meant to illustrate how we can use words and deeds to help not hurt. The stories of patients, friends, caregivers serve as examples of the best and the worst.
Having two primary cancers has been a learning experience. I hope this book will help others in their struggle.
Roseanne passed away 8-27-08 after her breast cancer recurred.
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