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Charlotte Longo
01.01.99

Carteret, NJ; CharsWebNJ@AOL.COM

1950 / Class of '98 / Type: IgG-kappa / extensive bone lesions, stem cell transplant / Last Update: 1/99

In the fall of 1997, I began having pains in what seemed to be my upper or inner thigh. The pain became persistent and intense. At first I thought I probably hurt it at the gym in step aerobic classes or perhaps overdid it in the garden. I was extremely active for my age of 49 (I have since turned 50) so these were real possibilities. I also started having vague headaches almost everyday and had begun having heavy nosebleeds in October. Since I now had 3 complaints and was tired of missing my step class, I paid a visit to my doctor in December. Initially, he chalked the headaches up to corporate stress, the nosebleeds to dry air and the leg to a sprained or strained muscle or tendon. Wrong, wrong and wrong, as we all now know. I returned to the doc a few weeks later still complaining about my leg and we began exploring other
possible causes such as referred pain from a gynecological problem or a pinched nerve in the spine.

My doc finally referred my to an orthopedic specialist. I had to wait a month for an appointment! After only five minutes with me, the doc knew the problem was in my hip. When the x-ray showed nothing, she insisted on an MRI. She thought my pain was far too significant to be "nothing". On March 9, 1998 she
gave me the bad news that I had "metastatic" cancer all over my pelvic bones. The head and neck of my right femur were the worst areas (hence the leg pains).

Not expecting ANY kind of bad news, I had gone to her office alone and received the news alone. What a disaster! I sat in her office and wailed for two hours before they got a family member to come for me. The doc and my PCP immediately scheduled many, many tests in search of a primary site and both recommended the same hem/onc. The combined results of no apparent primary site and suspicious blood labs lead to a tentative diagnosis of MM. Further blood work and BMB confirmed the diagnosis in early April - IgG IIIa kappa. I was sure my life was over. I had lytic lesions on the bones of both arms and
both legs and on my skull as well as my pelvis. I was very anemic and needed transfusions. I was in and out of the hospital for mysterious ailments. The myeloma was aggressive. My IgG was 9980!!

My hem/onc thought I would be a good candidate for a PBSCT due to my age and fitness level and otherwise excellent health. Given my numbers, he thought it was the best shot I'd have at a longer, good quality life. He referred me to Dr. Roger Strair, the director of transplantation at the Cancer Institute of
New Jersey, a branch of the National Cancer Institute. Dr. Strair also thought I was a good candidate for a PBSCT and explained the protocol used there and the risks. My hem/onc had already gone over treatment options with me in case I decided not to have a transplant. As scary as it seemed, I knew
a transplant was right for me and signed on to the program and passed all the required tests.

All of the preliminary treatment was handled by my hem/onc following the institute's protocol. I received 90 mg of Aredia once every four weeks at first, then every three weeks. Treatment was in alternating 3-week cycles as follows:

First 3 weeks:
Day 1: vincristine, carmustine and cyclophosphamide via port
Day 1-4: melphalan 14 mg daily
Day 1-7: prednisone 70 mg daily
Day 8-14: prednisone 35 mg daily
Day 15-21: no meds

Second 3 weeks:
9 million units alpha interferon every Mon., Wed., Fri. - (YES, 9 MILLION UNITS PER SHOT)

The first three weeks were repeated twice (minus the vincristine due to peripheral neuropathy). The second three weeks (interferon weeks) were repeated only once, thank God. I had high fevers, shaking chills and body aches everywhere from the interferon!!!

Response to the protocol was unremarkable. IgG went from 9980 to 8500. B2M went from 4.6 to 3.3.

Following the initial chemo, I received four courses of Dex over one month. IgG dropped to 4800, a nice drop but still a very high level with which to go into a transplant.


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