1922 / Class of '96 / Age 74 / 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
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
1/99: I am sad to report Alf Lied died 1-10-99 after a very valiant fight.