1929 / Class of '93/ extensive bone involvement / Died: 4/98
In his own words:
I am 67 years old (as of December, 1996) and have lived all my life in an urban area not close to any toxic dump, high tension power lines, etc. I was born, raised and lived in St. Paul, Minnesota, for over 30 years (except for 2 years in Minneapolis when I got married); after 2 years in Los Angeles I have lived in California, for almost 28 years.
I have until the last few years been in exceptional health. In childhood, I had the usual diseases; chicken pox, flu, colds, had my tonsils removed, etc. During my last 32 years of employment ending when I retired in 1985, I used about 10 days of sick leave. Five of them were consecutive for a bladder infection.
In mid-1995, I began to experience pain in my left leg. X-rays showed nothing of interest but a blood test had a high level of Alkaline Phosphate indicated Paget's disease. I began medication for that.
In March 1993, while sitting in my chair in the living room I felt a snap in my left leg. The pain was so severe I had to call an ambulance to transport me to the hospital. X-rays determined I had a broken left Femur close to the hip. This was repaired with a metal plate and four screws. I spent 16 days in the hospital to recuperate and start physical therapy. Tests showed something was amiss so I had X-rays, a bone scan, 24 hour urine tests, blood tests almost every day, and a bone marrow biopsy.
After being released from the hospital, my primary physician referred me to a hematologist. When my wife and I met with him he explained the disease, the expected treatment, possible side effects, etc. It addition I had Amyloidosis which affects 10-15% of Myeloma patients. He was very thorough and clear. He sent us home to think about it before continuing further. When we got to the car I sat for some time repeating, "WHY ME?' Two days later we went back and I started on the protocol of Prednisone-Melphalan four consecutive days, every four weeks.
After three months, the blood counts showed evidence of stabilizing. It was originally planned to keep this up for about a year. However, my physician talked to Dr. Kyle who said they were having good results continuing for 24 cycles. This is what we did.
During the treatments other problems surfaced. In the fall of 1993, I lost feeling in my right first finger and the ability to move my right arm. I was diagnosed as having two tumors on my spinal cord which were removed the end of October. Then in June, 1994, I had my Gall Bladder removed. January, 1995, I had pain in my left shoulder, that proved to be a torn rotator cuff, which again was repaired by surgery.
We discontinued chemotherapy in April, 1995 as planned. I was originally expected to begin Interferon injections as a maintenance program. However, extensive dental work including extractions delayed this until August. The interferon caused severe fatigue, lack of appetite resulting in weight loss, and irritable itching. In January, 1996, we stopped the Interferon.
In the same month while pushing something my right arm became painful. It turned out I had a broken upper right arm. The bone was replaced with a prosthesis that was attached to the bone with a ball on the end to fit in the shoulder socket. I then experienced 3 weeks (5 days a week) of radiation to kill the Myeloma cells. In March, an x-ray showed a crack in my right elbow and the possible crack in the upper part of my forearm. I am now taking IV Aredia once a month in an attempt to strengthen my bones.
I continue to have a blood test every month which, until a June, were within the proper range. However, my IgM and IgG levels showed an increase level of protein. No medication will be started until at least the next test the end of July. If the Myeloma shows evidence of returning I will probably go back to the Prednisone/Melphalan protocol.
Have you gone to a doctor for the first time or check into the hospital for a procedure and they ask, "Have you had any operations; are you taking any medications?" I keep a form showing medications I am currently taking and a form showing operations I have had. I provide a doctor, dentist, or hospital a copy when I first contact them. I hope this provides the information you are looking for. If not please let me know.
In spite of all this during 1996, I have felt the best I have for some time. You'll note that many times I talk about problems, medication, etc., I use the word "we". I do this because I feel my physician and my wife are an integral part of my problem. Several times I have had to rely on my wife for physical needs, dressing, eating, and emotional needs. And of course, I have put my health in my physician's hands. I have complete confidence in him as he has the disease under control (he does not use the word remission). In addition, he is ready to answer my questions thoroughly and in plain language. Even though my appointments call for a 15 minute period he will spend as much time as I need. Since I began treatments with him I have heard nothing but the highest praise from nurses, other doctors and patients. I think this is extremely important for recovery.
11/97 - update
I'm posting this message describing how I am controlling my pain. It may be of help to someone. I was diagnosed with Multiple Myeloma in March, 1993. At that time I was pain free and was put on the Melphalan/Prednisone protocol (four consecutive days every 4 weeks) for 24 months. At that time the disease was under control. My physician does not use the term "remission". A few months later I started 3 times a week Interferon. However, that caused extreme fatigue, lack of appetite, and skin itching so it was discontinued after about two months.
I had 9 treatments of Aredia in 1996.
The doctor told me the control of Myeloma lasted 24 months on an average. At 22 months (January 1997) pain in my back and leg surfaced. A CT-scan and needle biopsy showed a Myeloma tumor in the lower right pelvic area that was kicking out Amyloid deposits. I had two one week stays in the hospital, three weeks of radiation and chemotherapy of Decadron. In addition, I was given pain medicine in increasing levels. It progressed through Morphine to Dilaudid plus duragesic patches of Fentanyl 50mcg and 75 mcg. The pain was under control if I was still. My only pain came when I moved between the bedroom and living room. I would normally take two Dilaudid (2 mg) about 20 minutes before moving. However, I still had fairly severe pain.
I then went to sub-cutaneous infusion of Dilaudid. I have a battery operated pump about the size of three cigarette packs side by side. It contains a plastic cassette containing liquid hydromorphone (generic for Dilaudid). This constantly sends medication through a tube into me. It's like an IV. A nurse comes twice a week to change the injection site. It started in the abdomen, then to the upper arm, shoulder and now just above the collarbone. The needle (very, very thin) is encased in a flexible plastic tube. The needle is removed leaving the plastic catheter. The pain at the time of insertion is almost nom-existent. In fact removing the adhesive coverage from the previous site hurts more.
At the beginning the dosage was 0.7mililiters/1.4miligrams an hour. Because there was no pain the dosage was reduced in steps to 0.4ml/.8mg-hr. However, in October I again had fairly severe pain so the dosage was increases to 0.8ml/1.6mg-hr. The nurse has approval to increase the dosage as high as 1.5ml/3.0mg-hr if needed. As I had no pain for over a week on Friday the dosage was reduced to the original 0.7ml/1.4mg-hr.
I know that this protocol is not for everyone and maybe some physicians would not prescribe it. But if you're in pain I'd suggest you discuss it with your doctor. It has made my life a lot better. I hope it can help someone.
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