1937 / Class of '93 / Type: IgA / Bone involvement / Died: 1-5-99
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Submitted by: Elizabeth Luby
My husband Joe was diagnosed October, 1993, at the age of 56. He was being observed regularly by his internist and liver specialist for a Hepatitis C infected liver. At that time he had lost a brother and sister to liver cancer (a result of Hep C infections) and another brother had just been diagnosed with liver cancer due to the same thing. That brother has since had a transplant and is doing well. Anyway, the family was really stressed out with all the serious sickness. Joe had a black and blue mark on his leg that was ghastly looking. I suggested he mention it to his internist at the next blood test and the doctor went ape.
Joe was anemic and his red cells were clumped, which indicated the necessity of a more thorough blood test. The tests indicated Joe had a IGA count at 5900, and lesions in his skull and possibly spine. I think he was typed Stage III. We went to Mayo and to University of Chicago where the diagnosis was confirmed and the standard Melphalan & Prednisone treatment recommended. We chose University of Chicago which was a big mistake, as the famous Dr. Richard Larson passed us over to his new fellow who wouldn't respond to Joe's increasing back pain. By Christmas holidays, he was completely out of it and a friend/radiologist did a MRI on new year's eve day which showed multiple lesions in his lower back - source of all the pain! For two months we had been suggesting further tests might prove this to be the case, but the young fellow wouldn't order them, kept prescribing pain killers.
We left University of Chicago (never to return, I hope), had radiation treatments for the pain at our local hospital (Evanston) and found a hem/onc at Evanston who was involved in ECOG studies, who was a classmate of Robert Kyle and interested in treating Joe. He prescribed the melph/pred. with alpha interferon in tandem to see if the counts would go down more quickly. They began to drop two to three hundred pts a session. Joe stayed on the M/P for a year, and the interferon for a year and a half. His count dropped to 460 at its lowest.
Joe has been in remission for over a year, his IGA counts have floated up about 300 pts since then, which is no big deal. Dr. Brian Durie said you can start worrying when the count jumps 1000 pts. Joe has been taking Fosamax for the last several months. We hope it strengthens his bones sufficiently to avoid spontaneous fractures. He feels great (gets a little tired, but is still running a criminal law practice at top speed) and never really experienced much trouble during treatment. Fatigue was the worst when he was on the interferon. He never missed a day of work though.
He goes to a cancer wellness meeting once a week, we've attended three International MM Foundation meetings and found them to be invaluable. Our first was in January after his October dx. It was such a boost for our confidence. Joe went to the LA meeting in October to find out what might be the new ideas and to recharge his batteries in the company of very supportive people.
He has been open to suggestions of improving his diet, taking a reasonable amount of vitamins (as many natural ones as possible), and he goes to a Chinese acupressure massage therapist once a week. He says it makes his back feel better. I do the positive attitude reading and pass on the good advice to him. Our family and friends have been wonderful, making him realize how important he is to everyone. I include a lot of prayer and good wishes as part of the healing protocol.
If and when he gets into trouble again, we may look into other places for treatment-our hem/onc retired and we've been shifted to a new doc who's specialty is bone marrow transplant. Unless something fabulous is discovered between now and then, we know that his treatment will probably be more aggressive chemo, since he is not a candidate for transplant due to a liver compromised by the Hepatitis C. God willing, that will be a long way off.
Joe died January 5, 1999, five years after diagnosis. He never had a transplant or was put on thalidomide (to my regret). He did so well with the first and standard Pred/Alkeran regimen, but did not have any success with several different medications when the disease became active after about three years. We really didn't get a second chance.
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