1932 / Class of ’96 / Type: IgG-Lambda / Died: 10/01
My name is Börje Kyrklund and since 1974 I have lived in Rome (Italy). I was born in 1932 and grew up in Helsinki, Finland. Until the mid-fifties Helsinki was described as a “big small town” with a population of about 500,000, comparatively few private cars and largely unpolluted beaches. That situation changed drastically in the sixties when foreign exchange became available again for import of cars. However, the pollution was not too bad yet in those days although most beaches gradually had to close because of pollution of the bays of the surrounding sea.
As a child I tended to get nettle rash from chocolate cake but otherwise I had no allergies. I had my tonsils removed at the age of 14. At 16 I started smoking and gradually developed a habit of smoking 60 cigarettes a day. I gave up that habit in 1977 and I have not smoked since. However, giving up smoking made me react with extreme allergic reactions to anything anywhere, mainly in the form of violent sneezing and some eczema on my wrists. The smoking had also given me emphysema, as a result of which I developed a kind of asthma that calls for the use of Ventolin occasionally. Otherwise I was in relatively good shape and weighed 65-70 kg until I gave up smoking. Then a continuing slow increase in weight started to manifest itself. I now (1999) at the age of 66 weigh about 95 kg. I have been told to reduce my weight to diminish the strain on my skeleton.
In 1971 I started working on short-term assignments in developing countries, first in Peru (Lima) and Argentina (Buenos Aires) then in India (mainly Delhi). I spent a total of about 15 months in those countries during 1971-1975. In the same period I spent three months in a small town in Spain, ten months in Austria (Vienna) and I set down my ‘headquarters’ in Rome in January 1974. Since then I have lived in Rome with comparatively frequent travel to developing countries. I retired from my fixed job in 1991 and started working as a consultant on short-term assignments. Apart from an operation to fix a broken Achilles tendon in 1983, I never had any major surgery. For the past 23 years I have lived about 100 metres from a large power transformer station, but I seem to be the only cancer case at least in the 8 family building I live in. Most people in the building have lived there for about 30 years or more. I have never lived in the vicinity of a nuclear power plant.
In July 1996 while on holiday with my family in Helsinki, I picked up two heavy suitcases and something snapped in my back between my shoulder blades. The pain was intense but passed after a while and left a persistent dull backache. Blood tests made in October showed no significant anomalies; the blood protein distribution was normal, the hemoglobin content 17.7 g/dl and the white blood cells were 5,900,000. An orthopaedic diagnosed my problem as a trauma caused by lifting heavy suitcases and prescribed treatment with ultra-sound, radar and electromagnetism. This went on for about a month and did not seem to have any effect on my backache. Late November I noticed that I seemed to stumble occasionally while walking. yes"> This got worse over the next month and on 20 December 1996, at the age of 64, I was admitted to a hospital for observation. By then I was walking with difficulty using a walking stick and dragging my right leg behind me.
A CAT scan and an MRI revealed a growth on my D5 (dorsal) vertebra. This was removed the following morning. However, during the operation it was found that the vertebra had softened considerably and it was like “cutting yoghurt”. Some parts of the vertebra were also removed during the operation to provide access to the growth. Immunoelectrophoresis of a blood sample showed presence of monoclonal IgG Lambda type proteins.
After the operation I still had backache, but at least I could walk normally after two days. I was due to go home for Christmas on 24 December. yes"> However, on 23 December, just before lunch, I was arranging my pillow when something snapped again in my back and I felt an excruciating pain that lasted for about two hours. This gradually subsided, but instead I was losing control of my lower limbs and by 6 p.m. I was completely paralysed from my chest down. yes"> The vertebra had collapsed again and squirted all its cancerous contents into the nerve canal.
I was operated again the next morning and two about 20 cm long titanium rods were connected to my rib cage along my spine to support the D5 vertebra. After that I had no backache anymore and no further plasmacytoma was found in my body. I plastic Ninja Turtle type shell was strapped around my torso and I kept that for about three months. After about one month in the hospital I was transferred to another hospital for radiotherapy. yes"> I had no major problem with the radiotherapy although it tended to cause initially a certain lack of control of sudden bowel movements. I was kept in the second hospital for about a month for radiotherapy and for physiotherapy, mainly because I was still unable to walk. In all I had about six months of physiotherapy. For the first two months at home I depended entirely on my wife to clean me, dress me, get me out of bed and to drive my around for my therapy sessions. In addition she was working full time. After three months the Ninja Turtle shell was removed and I was given a lighter brace to keep whenever I was out of bed. By then I could walk with the aid of crutches. In June 1997 I was able to walk without support and without any brace for my torso. However, instead I started developing a sensation of heaviness in my lower back and hip area. yes"> It was like having an enormous weight that pushed on the top of my femur and hips and impeded my walking. I still have that feeling and I am not very happy about it.
In March the same year, my legs and feet turned extremely cold. It was not just a sensation, they were actually cold. I was told by the neurosurgeon that this was because the marrow in my spine did not control the body temperature properly. In fact, after about two weeks the coldness disappeared, but instead my toes and my knees (especially the right knee) became ‘numb’ although I could feel it when somebody touched my skin in those areas. I still have that. Since January 1998 I also have some strange sensation of having something strapped around parts of my torso, sometimes with a slight ache and a certain soreness of the general area of my back. I was told do take up swimming, but I am unable to control my legs unless I swim on my back. Trying to swim on my front I just go straight down under water.
While in the first hospital in 1997 I was introduced to a specialist in internal medicine, who claimed to be an “international specialist” on my condition. My neurosurgeon said, “He will save your life”. I was treated with vitamin pills (B) and iron pills by this specialist until the end of the year. In spite of being a specialist, he never noticed that I had an abnormal peak in the blood protein distribution. I also developed a pain in my upper right arm in October. I thought that was a tendonitis caused by extensive use of a computer to meet a deadline for a report. In December 1997 I felt intense pain in that arm, but it subsided after an hour or two. In early January 1998, I raised my right arm to put it on the armrest of my chair and the intense pain came back and would not subside. An X-ray showed that about one third of the upper arm bone had disappeared and was surrounded by a growth. By the time I got onto the operating table two days later, the bone had broken completely. The growth had also surrounded the radial nerve of my arm and removing the growth caused a trauma, as a result of which my right hand was completely paralysed for about 4 months. It took a total of about 6 months of electric stimulation and physiotherapy to restore the hand to more or less normal. It is still partly numb, but at least I can write with it.
My orthopaedic discreetly and in confidence suggested I switch to another doctor for general treatment of my condition and since early 1998 I have been treated by a true international Italian expert haematologist, specialised in leukaemia and myeloma. A marrow sample from my hip showed about 20 percent of mature plasma cells. I was put on Alkeran and Decadron for four days repeated with one-month intervals. After three months, immunoelectrophoresis of my blood showed no monoclonal proteins and the chemotherapy was done another three times with two months in between each cycle. yes"> Traces of monoclonal proteins have showed up again, but do not seem to give reason for concern. Since the beginning of this year I have been giving myself three injections a week (3 million units each) of Interferon A. The only problems I had with the chemo were sleeplessness caused by the Decadron, disappearing veins that made blood sampling difficult and that my white blood cell count dropped down to well below the level of 3,000,000. I usually had to have injections to boost the white blood cell count before I could start a new cycle of chemotherapy. My hemoglobin content has been varying slightly around 16 g/dl, so there does not seem to be a problem there. My platelet count is just below the normal lower limit and the white blood cells seem to have settled at 3,000,000. I feel no side effects from the Interferon. I have had no further outbreak of myeloma since January 1998 and whereas previously I had basic blood tests every month, they are now down to being repeated once every three months.
Although I do not feel like going for long brisk walks without an extremely good reason, I lead a relatively normal life now and have a rest whenever I can. Life is quite pleasant and you get used to a certain extent of constant pain. I still go on consulting trips around the world. I carry less luggage and have switched to another type of suitcase, walk less and use taxis more frequently when I am abroad. During the first half of this year (1999) I have been twice for three weeks in Peru and once in the Philippines, in addition to doing preparatory work for these trips at home. During the second half of 1998 I did similar jobs in Honduras and in Sarawak (Malaysia) and I also wrote a manual to be used by a project. I do not think much about the future. So far it is fairly bright.
Update April 2001: By February 2000 I had a pain in my right hip and had started limping because of that. The orthopedic surgeon had a theory that the pain was caused by some plasmacytoma in my cervical area and a MRI was run on the area from my skull to my hip. It showed something vague in my hip area but this was not studied further. I was put on a regime of Interferon, Prednisone and Alkeran as follows: three times a week Prednisone, for three weeks, three times a week Interferon and the fourth week three days of Alkeran. This I continued until December 2000.
In September 2000 the pain in my hip got worse and I had to use a stick when walking. This gradually got worse and at the end of November I felt a strong pain when sneezing. Mid-December I was admitted to a hospital for observation. An MRI and Cat scan showed a fractured iliac arch on the right caused by plasmacytoma. In addition there were faint lesions (“pepper and salt”) on several points along my spine. I was prescribed radiotherapy and had 28 sessions with linear radiotherapy on my hip area until early February 2001. The treatment with Interferon, Prednisone and Alkeran was interrupted for this treatment. By then the white blood cell count was consistently down to 3000 and the hemoglobin had gradually dropped during the year from 16 to about 10.
In February 2001 I was put on treatment with Thalidomide. A baseline bone marrow biopsy revealed about 50 percent of abnormal cells in the plasma. A 24 hour urine sample showed 1379 mg/l of proteins. The Thalidomide dose was gradually increased over four weeks from 200 mg a day to 400 mg a day. During this time I had blood tests done, first once a week and now every two weeks. I am also interviewed by a psychiatrist every two weeks and have neurological test done once a month. This is because the Thalidomide as side effects can cause depression and affect the peripheral nervous system.
I am still (April 2001) continuing with the Thalidomide treatment. The immediate problem is that with limping and walking with support (from December 2000 to February 2001 with two crutches) my back muscles have weakened considerably and walking is difficult so I still have to use a crutch when walking. Needless to say, I have not been able to do any consultancy work since November 2000. During the July to November 2000 I did jobs, a few weeks at a time, in Honduras (twice) and in Ghana.
I am still struggling on and hope the Thalidomide will take care of the remaining plasmacytomas in my system (the hip and spine area). I am also having intravenous infusions of Aredia once a month to help heal the fracture in my hip. I seem to be doing good progress at least in that respect. I have started physiotherapy to strengthen the back muscles and hope to be able to walk again without support. Although I sometimes wonder about how long I can continue with this without fatal consequences, I am still in relatively good spirits and look forward to the summer when I expect to be able to walk more or less normally again. Right now, I cannot walk more than about 50 metres at a time without being tired, but I still drive car to our country house about 100 km from Rome.
In July last year in Honduras I started smoking again, but no cigarettes, only big cigars. I felt I needed to have some vice, with all the problems I have. Quite pleasant. To keep me busy, I have started learning Visual Basic programming and database applications for Internet and intranet. The purpose is possibly to get into web site design and programming. Even if nothing comes out of it, I feel that it gives me some intellectual stimulus. Life is not too bad, in spite of it all. In fact, it is still quite pleasant.
Here is the last chapter of Börje's story, written in loving memory by his wife, Jennifer Streeter Kyrklund. (email@example.com)
After his April 2001 update things started to go downhill for Börje. During June I noticed that his hands and feet were permanently swollen but he dismissed this as being of no significance – I had a horrible feeling he was being over optimistic. When he went to the hospital for his monthly dose of Aredia his doctor insisted on keeping him in for some tests because he seemed unwell. It turned out that his kidneys were not functioning properly, also that his liver was swollen and contained several “cysts”. He received some treatment for the kidneys over a few days, an appointment was made for a liver biopsy in July and he was released.
He was readmitted in July for the biopsy and for more treatment on the kidneys. The biopsy revealed that the Myeloma had spread into the liver. This was bad news. It was also decided that he should start dialysis. More bad news. Nevertheless, he was allowed home between chemotherapy cycles.
Only a few days later (by now last week of July) he had to be readmitted because of agonizing abdominal pain – apparently a side-effect of kidney malfunction. The doctor decided he should continue dialysis and chemotherapy on an in-patient basis so that he could be monitored more closely. By mid-August he had become almost totally paralysed from the waist down due to a developing spinal lesion. He had also become confused – his speech had become slurred, he refused to eat, and he seemed to be only dimly aware of what was going on around him. We thought he had reached the end, but a series of blood transfusions seemed to revive him and he woke up one morning back to his usual self. He also resumed eating.
Thus things continued through September, although he was losing weight and getting progressively weaker. Blood coagulation problems meant that his skin was covered in big black blotches where blood had haemorrhaged into the tissues. Chemotherapy was quietly discontinued as being useless. By end-September he had again lapsed into confusion and again we thought he had reached the end and again he was brought back from the brink of death by a series of blood transfusions.
During October, the dialysis started to put a strain on his heart. There was a permanent haemorrhage from his nose. The doctor said he could die anytime from heart failure, kidney failure or haemorrhage somewhere in his body. Dialysis was discontinued when they realized the tubes were blocked and couldn’t be re-sited. He was given palliative drugs to keep him comfortable, and his heart stopped beating on Sunday 21 October 2001. REST IN PEACE.
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