1922 / Class of '96 / Kidney complications / Died 1-10-99
My name is Alf Lied. I live on Vashon Island a short ferry trip from Seattle, Washington. I am 75 years old.
I grew up and spent my first 20 years in a city with no pollution on the coast of Norway. I escaped from occupied Norway to England and spent the next 5 years in the Royal Norwegian Air Force.
After the war I immigrated to USA. After finishing my education in Aeronautical Engineering, we settled in the outskirts of Seattle. My work has taken me to other states and countries, but all areas have enjoyed good climate and lots of normal fresh air without industrial concentration.
I have always enjoyed exceptionally good health and only been to a hospital when our children were born or to visit a friend.
I was diagnosed to have MM in January 1996. I had my last physical in May 1995. Except for a slight presence of a slightly anemic condition, everything was normal. In the Fall of 1995, I noted that my voice was getting a little coarse and I was getting a very slight, light irritating cough. In December when moving and replanting some trees, I noted that I got a little more tired than normal. However, I attributed it to my throat condition, assuming that I had caught some bug. In January, moving some more trees I got easily tired and decided to see my doctor for a checkup. He discovered that my creatinine had gone from 1.0 to 2.7, my Hematocrit from over 40 to 28, the BUN from low teens to the 40s. My blood pressure was normal around 170/70 where it has been pretty much throughout my illness. Dr. Harries at the Polyclinic now concluded that I could have either a vasculitis of the kidney or some other form of inflammatory process such as Multiple Myeloma. He arranged for a ultrasonic inspection of the stomach and a 24 urine sample and made an appointment for me to see Dr. Ochi a Nephrologist. He confirmed that I had Renal insufficiency and the 24 hour urine showed 4.1 gm with 90% globulins and 10% albumin implying that the major problem was excessive load of monoclonal protein.
In consultation they therefore referred me to Dr. White in Oncology and Hematology. Reviewing the data, he was quite sure that I had MM. He took a biopsy of my breast bone and the results showed that the bone marrow clot section had 90% marked dysplastic plasmacytosis characteristic of MM. This makes my case a Stage IIIb MM. The ultrasonic of my stomach showed everything to be of normal size and shape. The x-rays showed that all was normal as far as lungs, heart and throat are concerned. In order to establish if bone damage/deterioration had taken place due to the MM he ordered a complete skeletal survey. This survey showed no significant findings related to the MM. The WBC is 2800, Hcrit 21.3 and Platelets 207,000. The creatinine is 2.9, the 24 hr. urine specimen is 3.94 g/spec, globulin 92.8 and albumin 7.2. The first week of February I started my first Chemo with 18 mg. Melphalan and 100 mg. Prednisone. This Chemo was taken for 4 days 3 times per day. Ten days later Dr. White decided that I needed some more red blood and arranged for me to have 3 units of blood transfusion. Later in the week I felt quite poorly, no appetite, taste buds were off, had an oily taste in my mouth with a fever of up to 102 F. The creatinine had gone up to 3.6, WBC 2900, Crit. 27.5 and Platelets 134,000. After consultation with Dr. Harris, my primary physician, and Dr White it was decided that I should have another 3 units of red blood. I felt listless and tired during this period.
During the first week of March I started the second Chemo using the same formula of M/P. It was apparent that the Chemo reduced both the WBC and the RBC considerably. The WBC built itself up again with time but I needed red blood (2 units) about every 2 weeks to bring it back up to near 28-29. The weather was now getting better and I started to play golf and go for walks.
The second week of April, I started my 3rd Chemo. The formula was now reduced to 14 mg Melphalan & 100 mg Prednisone. I also had another 24 hr. urine test which showed that the protein had now dropped from 4.1 to 1.76 which was very good news. The WBC had dropped to 1600 and the platelets to 158,000. The creatinine varies during my total illness from 2.7 to 3.6 and the BUN had increased to 56.
I was scheduled to go to a golf school in California for a week and Dr. White arranged for a blood transfusion of 2 units to give me the required strength. The temperature in the desert was 103-109F during the week I was there. I was taking 10 mg. of Prednisone daily to keep my appetite. The school was held on the driving range from 8:30 to 12:00 daily and in the afternoon we played the course. I had no ill effect from this exercise and schedule.
I returned from the desert the first week of May feeling quite well. My physical showed blood pressure 120/65, pulse 78, skin clear, lungs clear, abdomen soft, WBC 5300, Hematocrit 33.1, Platelets 121000. Chemistries were remarkable for modest reduction in creatinine to 3.0. By the middle of the month I started my 4th Chemo using the reduced formula of 14 mg Melph/100 mg. Prednisone. On the 22nd, I received another 2 units of red blood.
We had decided to combine a vacation in Florida with the International Myeloma Foundation - Multiple Myeloma (IMF - MM) Conference in Miami in the middle of June. I therefore had a check-up prior to leaving. Since the WBC was down to 2700 and the RBC 24.7, I had another 2 units of red blood transfusion. However, at this time Dr. White suggested that I perhaps should consider taking Epogen (EPO) injections to generate red blood cells. The kidneys are supposed to detect and control the amount of red blood in the system. When it gets low the kidneys releases erythropoietin fluid which sends a signal to the bone marrow to produce more red blood. Due to the damaged kidneys this was not being done properly. The EPO consists of this fluid and by injecting a 10,000 units vial into my thigh it will release it into the system. To start with I did this twice a week, however, since I started using it the Hematocrit has gone up to and stayed around 40 so we reduced the injections to once a week which has worked out fine. The cost of the vial injection is about $125.-, however, it is well worth not having to obtain blood transfusions. The amazing thing is that the insurance will pay for the more costly blood transfusion but not for the self administered EPO.
The IMF MM Conference in Miami in June was very interesting and well worth attending. I had the opportunity to consult with Dr. Durie after the conference. After reviewing my medical history, he followed up with a letter of recommendation for further action. Dr. White had previously indicated that although I had no known bone damage, we may consider starting with Aredia injections to avoid future complications. Dr. Durie strongly recommended this and thus was instrumental in getting it started with the insurance company's blessing. He also noted that the uric acid was high and recommended that I take a 100 mg Allopurinol tablet/day. This should help relieve the strain on the kidneys. He also recommended that we replace the Prednisone with Dexamethasone. During all subsequent Chemos I therefore take 12 mg Dexamethasone 3 times daily for 4 days with the Melphalan (Alkeran). I am continuing to do this every 4+ weeks and the reaction to the Chemo has been a little more accommodating. The week after Chemo completion I can feel the poisonous effect but then it gets better and the last week I feel pretty good.
We will be leaving for a vacation to Europe in mid September for 3 weeks. I completed the last Chemo the end of August. Before I leave I will take an Epo shot, take one with me for 10 days later and then let everything ride until I come back in October. I have taken Aredia twice and will take it again just before we leave. I have asked Dr. White when we could expect a remission if it comes. His guess is not before 18 months. At 75 I am too old for BMT, so I am not complaining. When I read the Hem-Onc Digest, I consider myself very fortunate.
1/99: I am sad to report Alf Lied died 1-10-99 after a very valiant fight. Susanne
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