Winston-Salem, NC; email@example.com
1943 / Class of '05 / Type: IgG Kappa / Velcade-Dex-Thalidomide, Revlimid-Dex / Updated: 6/07
What in my background could possibly trigger MM?
I was born in Brooklyn N.Y. but held many jobs and moved to many different houses and locations during my life. I spent the first 10 years in Brooklyn near the beach, then moved to the suburbs of Uniondale, Long Island N.Y. where I stayed for 14 years, one year in Cincinnati, Ohio, one year plus at Cape Kennedy, Florida, 2 years in Albany NY, one year in Richmond, VA, 19 years in Winston Salem N.C, 16 years in Boston, MA. From age 15 to 25, I liked to modify my own motorcycles and cars. I would, of course, clean up using gas and I even ingested a small amount of gas while siphoning some from a tank. The largest block of time (15 years) I spent in a home I constructed in the countryside around Winston. Unfortunately, a high level of radon gas, around 35 units, contaminated the house. A house should be ventilated when the level reaches five. In my searching the medical literature, I found that radon doesnít seem to cause MM but it has been shown to increase the risk of getting leukemia. I also had to mow four acres of grass every few weeks on a large diesel tractor. Moving from house to house reduced my dosage of any carcinogen that might be found in the house or the area. My occupation also changed several times over my lifetime. For the first twenty years, I was an electronic engineer and I mainly designed instruments for Medical Electronics and the textile industry. I was exposed to a variety of chemicals at low levels iron chloride, tin and gold plating solutions, solder smoke. I then spent the next 11 years in companies and a university designing optical and electrical instrumentation for capillary electrophoresis to sequence the Human Genome. During that time, I am sure, I came in contact with small amounts [micro-liter] of fluorscene, acrylamide, buffer solutions and other mutanogenic dyes, however, the other lab workers were exposed to 10 times my dosage. For the last four years, I occasionally synthesized polyacrylamide. This exposed me to acrylamide, lightweight petroleum oil, acetone and heptane in kilogram amounts and tiny amounts of Azo initiators, boron oxide, emulsifier Span 80 and phenol; normal lab ventilation and gloves were used. From the literature, it seems that people that have a background in farming, mining or working with petroleum products have an elevated risk of getting MM. Although I have been exposed to some of these chemicals, it has been at a low level.
Life Time Health Status
As a child, I was sickly, having all of the skin diseases possible. I also suffered from migraine headaches because of allergies to chocolate, feathers and dust. I developed a small heart murmur after having scarlet fever but it healed up by the time I was twelve. As a teenager, my allergies continued but were not so bad. I still would catch colds sooner than most and had absolute no endurance in running any distance. In my twenties the allergies disappeared and I didnít get as winded when doing exercise. When I was 25, I started on a low cholesterol diet to keep my cholesterol below 200 during the rest of my life it has ranged between 160 and 180. I was 5 foot 11 inches and maintained my weight at 160 lbs plus/minus 10 lbs since high school. I never smoked or drank but my father did smoke in the house. In my mid-thirties my allergies started to return, especially due to all the grass cutting I was doing; I also developed an intolerance to dairy products, which I stopped consuming. I always believed in taking vitamins and added a calcium supplement along with the 500 mg of vitamin C, 400 IU of E and the occasional use of selenium and chrome. I took these supplements religiously for 30 years. When I was 43, I developed a yeast infection in my intestinal track due to a combination of broad-spectrum antibiotic treatment, sugary snacks and working in a moldy basement. The yeast infection made my allergies worse and gave me tremendous headaches. It took me two years to diagnose it and cure it. I also started on allergy shots for my ragweed, dust and grass allergies. This worked very well by the end of the year and I continued the injections once a week for six years to build up my resistance. I noticed that after this bout with the yeast infection that I became excessively winded when lifting weights. I was later told that this might have been a form of exercise asthma although I never had anything like an asthmatic attack.
I was only hospitalized as child for a broken finger, nose and tonsil removal, although I did suffer a compression fracture in the Lumbar 4,5 region from jumping of a two-story building. The injury never bothered me and I found out about it through an X-ray. In my 50Ďs I was still in great physical shape and could still bench press 200 lbs and do 23 pull-ups. At 55, I started to notice some aches and pains in joints and at 57, my knee locked up. I started to take Glucosamine, Chondroitin and Omega 3 & 6 oils, which worked well and removed the aches and pains in my left hip.
Discovering Multiple Myeloma
I believed that the first symptoms of MM started in the winter of 2004. I found that on many evenings, I would fall asleep watching TV at 8:00 p.m. and I developed an itch all over my back after showering in the morning. By March of 2005, I developed some type of inflammation around my sternum that was painful. This condition worsened over the next month making the muscles in my ribs and abdomen tighten. I tried stretching them and only succeeded in pulling a muscle below my ribs. I was to the point that I could not sit up in bed so I started sleeping in a Lazy Boy. The muscles started to get better but then I dislocated my shoulder while sleeping. This was very painful, as I could not raise my arm away from my body. I immediately went to an orthopedic surgeon in the hope of getting a steroid shot. He looked at the shoulder ran no tests and told me to take large doses of Ibuprofen for a month. I did this for a week and noticed very little improvement. I decided to go to my acupuncturist to see what he could do. After each treatment, I was able to raise my arm a little further and within 3 weeks, I could raise my arm over my head.
In July 2005, I was able to go on vacation and play a round of golf. My stomach and chest muscles were still giving me a lot of pain and I started to sleep in the chair again. I went to the gym for a month to try to work my muscles but with no success. At the end of October, I decided to see a local doctor. She ran a series of blood tests and had my ribs X-rayed. The blood test showed slight anemia (hemoglobin 12) and a drop in good cholesterol HDL from 15-20 to 5. The X-ray came back normal and she told me to come back in January. I asked her for something for the pain and received nothing, I assume, she thought I was an addict. November 20 I had a plane flight to head home to North Carolina to be with my family for a few months. I was getting ready to leave for the airport. I finished my shower and reached for a towel to dry myself. My back gave way, T-4 partially collapsed, the pain was very severe but I had to get to the airport. I dressed and called a cab. The cab picked me up but had to make a detour through an apartment complex. The cab driver went over a speed control bump too fast and I was bounced down hard in the seat I screamed, something else in my back broke. I got to the airport and got on the plane for the two-hour flight to Greensboro. I figured that my back had popped out of joint and a trip to the chiropractor would fix it. When I arrived, I immediately made an appointment with the chiropractor and acupuncturist. The chiropractor wanted to take an X-ray and asked me to take off my shirt. As I tried to pull the shirt over my head, I fell to the floor screaming in pain. The chiropractor took the X- ray but it was of poor quality and revealed nothing. I decided to not let him work on me at all. The pain was terrible as it started in my back and came around my chest to the front. It felt like someone had cut my nipples with razor blades. I headed off to the acupuncturist. She was more successful in reliving the pain. The needling reduced the pain around T-4 and somehow distributed it over the muscles on the sides of my back.
I quickly got an appointment with a doctor, an old acquaintance, Richard Brodkin who happened to be an oncologist. I didnít feel that I needed an oncologist but I felt that Richard could steer me to the appropriate person. The first week in December, I saw Richard and he immediately was suspicious about the type of pain and the loss of muscle mass in my chest. He ordered tests and scans to look for MM and he found it. My I gG was 4500, IgA 7, IgM 14, m spike 2.94 g/dl, HG 9.4 g/dl, HGB 26.9%, WBC 7000, Neutophil 37.1%, Platelets 201000, Albumin 4.4 g/dl, Calcium 9.6 mg/dl, BUN 23, Creatinine 1.4 mg/dl, a CAT scan showed a total collapse of T-4 and partial collapses of T-9 and T12. There were lytic lesions in T-1, T-2, femurs, ribs and a 1-inch lesion in the left humorus.
In two weeks, my treatment started Velcade, Dex 4 days 40 mg per day 10 days off and Thalidomide 100mg every day. I also started on a monthly schedule of taking Aredia to rebuild my bones. In less than a month I gG dropped to 550 and at the end of the 2nd month it dropped to 440. After the third round of taking Dex, I noticed a pattern developing. I was told that I would feel wonderful when taking Dex and would crash when I halted the steroid. This was not the case at all; I had tremendous bone pain when I took the Dex. As soon as I realized this, I discontinued the Dex since I already had more pain than I knew what to do with. By 2/2/06, my HGB was down to 8.8 g/dl and I needed a transfusion. The transfusion raised my HGB to 13.6 but I also got a surprise with the transfusion. I started to have an allergic reaction as if I had drunk some milk. A benadryl solved the problem, which probably arose from the blood donor having recently consumed some milk. For a normal person this would not have been a problem but I had tremendous pain in my chest and back whenever I coughed or sneezed. I was also concerned about breaking more bones and the extra mucus made me choke due to my swallowing problem. I had also contracted pneumonia by this time and had been taking oral antibiotics at home for the last week. Soon I discovered a rash that ran from my back to my stomach, I donít know how long it had been there since I was pretty drugged up with oxycodone and diazepam. My wife looked at it and Richard diagnosed it as shingles and prescribed and antiviral drug. During the inspection, my wife noticed a large bedsore [1.5 inch diameter] on top of a protruding vertebra. We tried to treat it with home remedies but we were getting nowhere. A month later, we were told about Tegaderm and DuoDerm, which are coverings that can allow bedsores to heal although this sore took over 6 months to partially heal. We ordered a gel-filled mattress to fit in my electric hospital bed to prevent any more sores from forming and it worked very nicely.
My pneumonia was not getting better and Richard wanted me to be admitted to the hospital to get antibiotics intravenously. On 2/17/06 I entered the hospital I was down 40 pounds to 120 pounds my WBC 1800, HGB 9.6, platelets 200,000, Bun 3, Creatinine 0.8, Albumin 2.0, calcium 7.4. I stayed in the hospital for 20 days. Apparently, the antibiotics killed the pneumonia but my lungs were full of fluid and I was unable to clear them. I had a group of pulmonary doctors come and visit me every day with very concerned looks on their faces so I knew I was in trouble. They tried to get me to cough but this was hopeless since the muscles in my chest, ribs and stomach were fully contracted to the point that I was being crushed by my own muscles. My throat became occluded, the manubrium, a bone above the sternum had collapsed inward and my stomach was bulged out since there was no longer any room for it my body cavity. Somehow, the fluid started to become reabsorbed into my body and my lungs started to clear. I could tell I was making progress by the look on everybodyís face after my morning X-ray. I had barely survived I had shrunk to under 5 foot 5 inches and less than 120 pounds but I was going home.
Evaluation of Treatment So Far
The doctors that have treated me had to make decisions about my care. As with all choices, some are good, bad and marginal and their evaluation is, of course, improved by hindsight. The original diagnosis of MM was prompt and right on the mark. The choice of drugs for treating MM were a first-line choice and they didnít damage my bone marrow thereby preventing me from having a stem cell transplant. Not having kyphoplasty in early December, I believe, was a missed opportunity. It would have probably reduced the pain I was having from T-4 since it was totally collapsed and it would have strengthened other weakened and damaged vertebrae and would reduced the chances of future breakage. This procedure appears to be relatively safe as they have a 1% failure rate. Of course, the failure can be very severe since the spinal cord can become compressed. Kyphoplasty has an optimal window as it can best be done while the spine is broken once it starts to heal the vertebra cannot be easily expanded back to their original dimensions. From the oncologist point of view, he may see this procedure as interfering with his more important treatment of the cancer. Any surgery has risks of infection and I had a compromised immune system, which was to become more compromised from my MM treatment. Since most of these chemotherapy drugs can produce pneumonia and shingles it would seem reasonable that patients be given prophylactic medication to prevent these dangerous side effects.
The main problem in the treatment of my pneumonia lay in the physicians not recognizing how the muscle spasms totally immobilized my ability to clear anything from my lungs. Two papers in the Journal of Bone and Joint Surgery [Kyphosis and Fracture of the Manubrium in Tetanus written by D.H.H. Robertson and Fracture of the Manubrium Sterni by B. Helal] describe how two healthy 13-year-old boys contracted tetanus. They were bent over into the fetal position by the contraction of their abdominal muscles to the point that several vertebras suffered wedge compression fractures [T-3, T-9] and the sterno-manubrial joint folded inward. From this anatomical position, it is clearly difficult to breathe, no less clear oneís lungs. I also believe that my chest and spine suffered additional damage from these powerful muscle contractions, as my chest was normal in December and became deformed later. The treatment for this condition is the use of substantial amounts of muscle relaxants, while I was only given 10 mg of diazepam/ day for muscle spasms. Diazepam seemed to be a poor choice since it is usually recommended for short-term use. It can produce psychological problems and sleep disorders, while there are other muscle relaxants that might be more appropriate for long-term use. Magnesium sulfate has been given intravenously to relax muscles. I stayed on diazepam for 7 months, which may explain why my writings have a weird tilt.
Recovery at Home
I returned home 3/08/06 still on 100 mg of Thalidomide my IgG had stabilized at around 550 - 650. I was still in terrible pain and I was on oxygen. The shingles were going away but I was suffering from an aftershock of pain from the shingles. If the skin on my back was stretched, it produced pain. The remnants of the shingles stayed with me for another four months. I spent all day and night on my back since there were no other positions that were tolerable. I decided to have my wife make a special pillow that I could lay on that would protect my spine and the large bedsore from the constant rubbing of the mattress. It looked like a giant letter U and the design was such that the spine fit in the center of the slot and the pillow supported my back on either side of the spine. We tried several amounts and types of filling materials until we hit on the right combination. I tried to gain weight by eating many small meals, as my stomach didnít have much room. I monitored my calorie intake and gradually increased my intake from under 1000 calories/day to 1500 calories but I didnít gain any weight so I continued to eat more. I went to 1800 then 2000 calories but I still didnít see the scale move. I stayed around 120 pounds. Then I forced myself up to 2300 calories and the scale started to respond. At first, it was a pound a week, then maybe a pound and a half. I also started an exercise program to try to regain some basic functions. I could not lift my hands above my shoulders and walking a few steps was a chore. For some reason, my right calf had virtually disappeared all I had left was the bone with a little meat on the back of it. I started to walk in the living room doing laps around the couch with an oxygen tube tethered to me. I didnít think that I needed the oxygen anymore and asked Richard about it and he said to get rid of it. I foolishly just took it off like an old suit of clothes. Within two days I noticed that I was suffering from headaches and concluded that I still needed the oxygen. I decided that I needed to get of it slowly and gradually reduced my dependence over the next two weeks. I started to do calf raises and squats to strengthen my legs. To work on the thin calf, I tried to do a one legged calf raise. Initially I could only do one repetition but by the end of two months, I was up to 20. My muscles had turned into wire bands with no flexibility so I continued to stretch them with various exercises until I could get my hands well above my head.
In May I was up to a weight of 128 pounds. I knew that my bones had become decalcified and started to think of where I was getting my calcium. I was allergic to milk products and therefore had almost no contribution from my diet. Richard had said nothing to me about supplementation so I asked the nurse. She seemed very concerned about adding calcium since this could damage the kidneys. I disregarded this advice since my blood calcium was normal and I had normal kidney function. I decided to add 900 mg of calcium mainly in the form of calcium citrate, 200 mg of magnesium oxide and 800 IU of vitamin D. I found that citrate tends to produce loose bowels and had to replace some of it with calcium carbonate, which is not as efficiently absorbed as citrate. I decided to try to walk outside by walking up to the corner and back about 100 yards. I was successful and continued the process for months, each day extending the walk a little more: 1/8 mile, ľ mile, Ĺ mile, 1 mile and finally 1-Ĺ miles in less than 30 minutes. In June, I started to have a peculiar overheating problem. Most of the day, I would spend in bed and at 3:00 p.m. I would start to get hot and sweat. This would continue until 8:00 p.m. when I would cool off and be normal until 3:00 p.m. the next day. The times were consistent although they could vary by about an hour. This went on for a month so I decided to ask the acupuncturist to come to the house and work on me. She used a Chinese Medicine diagnosis of excessive Yang and needled me accordingly and to my surprise, it worked for a couple of days. The problem came back again and she needled me again, this continued for about a month. I asked her what foods contributed to excessive Yang and she said beef. I normally didnít eat beef but in my zeal to gain weight, I had included a hamburger in my diet at 11:00 a.m. I removed the hamburger from my diet and the problem went away permanently.
I decided to work on straightening out my spine. I was told that a surgeon wouldnít touch me because of MM so I had to figure out my own approach. I had used chiropractors since I was a child but with my weak bones, I didnít want anybody pushing on me. In 1993 I had discovered a technique called Network Chiropractics, which used no force to adjust patients. All that was required was a light finger touch on different parts of the body. The body would relax and the out-of-position vertebra would pop back into position. I felt this therapy was safe and might even be effective. The closest practitioner was 100 miles away but I started seeing her 3 times a week in July. She used a combination of Reiki and Network and gradually, my muscles started to relax. At night when I would lay flat in the bed and my vertebras would make large popping sounds, as they would move back into position. T-4 was initially protruding about 3/8 of an inch after 6 months of treatment it was almost back into position. A Network Chiropractor can be found at www.associationfornetworkcare.com if you feel that it may be helpful for your condition. By the end of June, most of my blood work was normal although I still tended to have marginal white cell counts (around 3500) and low neutrophils.
In mid-August 2006, I requested a bone density measurement of my spine and a skeletal X-ray survey of all my bones. My height was measured at 5 foot 5 inches and I weighed 139 pounds. The skeletal survey looked similar to the CAT scan done in 12/05 as far as compression fractures and lesions. The bone density in four of the lower lumbar vertebra was measured. The average density of these four bones was .82 g/cm squared, which was 3.4 standard deviation below what a young normal person would have and clearly indicated a case of osteoporosis. A region of my pelvis was also measured indicating a 2.0 standard deviation decrease in calcium, which made my pelvis osteopenic. Understanding the meaning of these numbers can be a little difficult if you donít have a scientific background, but basically, I lost more calcium in my spine than in my pelvis to the point that they could both break fairly easily. Since MM can make holes in your bones, obviously, some spots can be much weaker than the average. My thoracic area had been attacked much more severely than the lumbar so I expected that they had a worse case of osteoporosis. The purpose of getting these numbers is to have a baseline to measure progress in rebuilding my skeleton.
In mid-September I discontinued all medication, which included 100 mg Thalidomide, 4 mg Warfarin, 300 mg Allopurinol. I continued to take 90 mg of Aredia every four to six weeks infused over one hour. IgG had been stable at around 650 since leaving the hospital but neuropathy had become a problem. The left side of my body had a worse case than the right. My left ankle felt that I had a shot of Novocain in the joint. I had been using acupuncture to reduce the neuropathy but it didnít seem to have any effect. The only thing that seemed to work slightly was a foot and leg massage several times a week. After six weeks of no medication, my IgG was 1049 on 11/03/06 and with all blood counts well into the normal range including white cells at 5500. I had continued to gain weight and was approaching 150 lbs. The neuropathy was starting to lessen and massages seemed to help. In mid December 2006, I decided to have another bone density measurement and another skeletal survey. This was only 4 months after the last one but I wanted to get an idea at what rate I was improving. The bone density in my lumbar increased 6.5% [26% per year] to a standard deviation of 3.0. The average osteoporosis patient only gains 3% in a year on oral bisphosphates. My pelvis increased only slightly by 2% but the real surprise was the skeletal survey as all the lesions were no longer visible. This included the large lesion in my left humorus. The fact that they were not visible didnít mean that they were totally gone but they had obviously gotten much smaller to the point that an X-ray was not picking them up. I started to ask myself why all the improvement. After all, the lesions didnít disappear from 12/05 to 8/18/06 when I had been taking Aredia and calcium supplements, what had changed. I started to list the changes: I stopped all medicines, started Network Chiropractor, was in better overall health and I was exercising more vigorously. Exercise that loads the bones makes them grow and become dense so that could have been a factor. I found out that Warfarin could produce osteoporosis with continued use. I decided to try to avoid the use of Warfarin in the future. Steroids such as Dex have a thinning effect on the bones but I hadnít taken them for many months. Another possibility was that I had osteoporosis before the MM hit. I had been allergic to milk products my whole life and therefore didnít have any. For the last five years, I had stopped taking my calcium supplements for some strange reason. The osteoporosis that I developed might have been caused in part by a dietary deficiency and not a genetic predisposition to getting the disease. Restarting my calcium supplements, having the MM suppressed, and having my body recover made it possible to rebuild the bones at a much higher rate than someone with osteoporosis.
On 12/25/06 I received a Christmas present in the form of a 4-mm kidney stone. I made the mistake of going to the emergency room where I was told that I had a stone and its size. Within 10 hours, the stone broke up and passed. I, however, contracted a cold from the cold emergency room and all the stress. During the month of January, my IgG started to rise to 1300, 1500, and 2000. It was going up very fast almost 200 points a week. We decided to get back on drugs but it wasnít going to be thalidomide. I wanted to stay with drugs that I used before so as not to exhaust my future options. I elected to use Velcade and Dex. I asked for a low dose of both. My first round was at half the normal strength of Velcade and 8 mg of Dex for 4 days every 2 weeks. The Velcade after one dose was terrible, making my neuropathy much worse, and even expanding the areas that were affected, that eliminated Velcade. Revlimid was now available and supposedly didnít cause neuropathy so I figured that was a good choice since thalidomide had worked well, except for the neuropathy, and Revlimid was chemically similar. The next week I started Revlimid at 25 mg but I only took 19 of the 21 pills. My IgG went down to 967 at the end of the month. My white cells had taken a beating  and I needed two weeks off, instead of the usual one week to recover my counts. Hemoglobin and platelets were well within the normal range. During this period I suffered from several sinus infections that did not respond to antibiotics even though the mucous was green. I solved this problem by putting a heating pad on my face twice a day for half an hour to dry out my sinus cavities. I continued to take Revlimid until June 2007. During that period, my IgG fluctuated between 990 and 1300. Some months I took as little as 16 pills and for a month, I added in 8 mg of Decadron once a week.
In June my M spike was 0.9. I tolerated Revlimid fairly well, except for two problems: I continued to get neuropathy, which further expanded over my right knee, and it also killed my white cell count requiring a two-week waiting period before the next cycle. I also experienced a rash but this turned out to come from the Allopurinol. Although taking Revlimid did not lower my IgG as much as before, I noticed that I had less pain in my back and ribs. I requested another bone density measurement and found that my bone density in my lumbar increased over 8%. This increase in bone density made me -2.4 standard deviations away from normal, which moved me from the osteoporosis range to the osteopenic range. Improving my bone density by 1 standard deviation in 10 months was a huge improvement and it cut my chances of another fracture in half. Although my lumbar vertebras were now osteopenic, I was pretty sure that my thoracic vertebras were much worse and probably had osteoporosis. My pelvis lost about 1% in bone density and stayed at Ė2.0 standard deviations. In fact, all three pelvis measurements were within the tolerance of the machineís accuracy. In other words, my pelvis density remained unchanged during the last 10 months and my spine gained 15%. I believe that my pelvis density is close to the density I had before I had MM. My spine was more severely depleted by MM and therefore was repairing itself. Pelvis density is more dependent on the weight of the person and since I weigh only 140 to 150 lbs, my pelvis doesnít have to be that strong. I looked at some studies on the web that compared bone density of pelvises to body weight. If I added 40 lbs to my frame and used the correction, I would have normal bone density.
Autologous Transplant to Be or Not to Be and Where?
By February of 2007 it was clear that taking Revlimid was not going to work for the long term due to the increasing neuropathy and the low white cell counts that could leave me vulnerable to infections. My physical condition had improved to the point that I could endure a stem cell transplant so I felt that this was the next step. Using the Internet, I was able to read many peer-review papers on the subject. It became very clear that this was not a very successful procedure but it was the best alternative available for my condition. It offered the following possibilities: getting off drugs for a few years so my immune system and skeleton could rebuild and an outside chance that I might live for 10 years in remission. On the downside, I could get very sick from the procedure and have a long recovery period with increased damage to my body and immune system, as well as a 4-5% chance of death and no guarantee that the stem cell transplant would work at all.
The transplant procedure had been done for at least 20 years so the method had been standardized throughout the medical community although there are slight differences in the way it is done. The main drug Melphalan had been used for forty years to treat MM. I thought the main problem would be the hospital and nursing care because of infections, especially pneumonia was my primary concern. Of course, pneumonia and flu are seasonal events, so I checked the CDC web sites to find out the peak months. The peak month is usually February so I tried to schedule the transplant for early summer. I felt this would cut down my risks during the transplant and allow to have time for my immune system recovery before the next flu season. I also placed an order for an IQAir filtration system [$1500.00] that is used in hospitals to filter out viruses from the air. Viruses are very small (less than 1 micrometer) and cannot be removed by many HEPA filters that are sold in stores. In fact, most of the particle/ hospital masks that people wear are very ineffective at removing viruses. An N-95 mask is about as good as you can get unless you are ready to wear a full-face respirator with cartridges.
The choice of which transplant center I would use was my next major decision. I researched Dukeís staff on the web and made an appointment with Dr. Long. The first person I talked to at Duke was a social worker. We were having a casual conversation, which seemed pleasant enough, when all of a sudden I realized that she was asking some probing questions about my daughter as to what she did and her availability. I stopped the casual conversation and asked why she needed to know this information. It turned out that she was probing me to find out if I had a caregiver who could be available for the transplant. If I had such a person, I would not stay in the hospital but would be kept in a private apartment a few miles from the hospital. She immediately assured me that results of the procedure were the same for in or out of hospital care and that many insurance companies required the out-of-hospital option. Of course, at that time, it was unknown what my insurance companyís policy was. I told her I didnít think much of the out-of-hospital method and I cared less for the way she went about getting the information. She asked for my records and assured me that the doctor would see them. Later I found out that he did not. Next the doctorís nurse came in and gave us some general information and a big binder which gave a variety of information on the transplant process and pre- and post-preparations. Dr. Long then came in and talked with me for an hour. He was very pleasant. I asked how the transplant process would proceed and he said that he would be in touch with my local oncologist. He said that the disease needed to stabilize but did not comment on my Revlimid treatment. He stated that he wanted M spike data and a bone biopsy. I figured that he would get all the specifics straight with my local oncologist but this did not happen in the coming months. On the way out, we stopped by at the financial office to discuss my insurance coverage. The financial officer assured us that he would do all the work and we wouldnít have to do anything. This did not happen and the financial officer never contacted the insurance company or us.
I returned home and had my local oncologist asked me if Dr. Long had commented about Revlimid as a treatment. I told him that there was no comment but a request for two tests. A Fish test was done on five genes, 4, 11, 13, 14 and 17, 13 showed a possible deletion and 14 had extra copies. The optical microscope examination showed no broken chromosomes also the results indicated a 50% plasma cell level. It is clear from the literature that the genetic damage detected by Fish does not have any predictive ability as of yet. Visual genetic damage detected in a microscope is a bad sign. Plasma levels can vary due to the spotty nature of the disease throughout the whole skeleton and the small, localized sample taken during the biopsy.
I decided to see what could be done with my broken spine so I set up an appointment with a spine surgeon Dr. Karen Rahn at Duke. She looked at my records and asked me some questions. I gave her the only X-ray and MRI films that I had. She said she would discuss my case with the other doctors and would be back with me on what could be done. I requested that she send me back the films promptly, as I had other appointments with physicians. She said she would return it within a week. I never heard from her again and did not receive the films back.
I didnít hear anything further from Dukeís transplant center, so I decided to try another transplant center at the Baptist Hospital, Bowman Gray School of medicine in Winston Salem. They had 3 doctors who specialized in MM. I made an appointment to see Dr. Keung about a transplant. The meeting with Dr. Keung lasted about an hour. He had thoroughly read my file since he was able to accurately recall many of the measurements made during my treatment. I gave a disc copy of my X-rays, which he eagerly reviewed immediately. Without me asking, he started to review the transplant procedure -- how it was done and what it was to accomplish. He even launched into a list of side effects that patients suffer from the transplant. When I tried to ask him a question it seemed difficult for him to understand and sometimes his answer didnít correspond to the question. When I asked about improving bone density, he thought exercise was a good idea and he was very current on the literature about MM treatment. Within a week, I received a letter from my insurance company telling me that even though Dr. Keung and the Baptist Hospital were considered in network, they are out of network for transplants and I must choose an approved transplant facility. A list was supplied by Assurant Health of some 50 approved centers along with some valuable statistics on the type/number of transplants done and patient mortality in 100 days and 1 year. Duke -- the only approved facility in North Carolina -- had some disturbingly high mortality numbers at the one year mark compared to the other centers. Dana Farber in Boston had reasonably good numbers, although not the best. I knew Boston very well since I lived there for 15 years and had many friends in the area who could help. I set up an appointment with Dr. Munshi from Dana Farber for the end of April. Dr. Munshi was on time for the appointment but left the room for 30 minutes. I assumed that he was reviewing my file but when he returned, he seemed to be looking for some paperwork, which remained allusive. He started to talk about my prior medical history and was very pleased that I had received Velcade, Thalidomide and Revlimid. He tried to recount my dosage and the number of cycles of each drug I had taken. I had to correct him since he was completely off the mark. I also told him that I was mainly suffering from neuropathy and that was what was limiting the dosage and time I had been able to take this treatment. I mentioned that Revlimid had caused neuropathy. He sheepishly admitted that Revlimid could cause neuropathy in spite of the statements from some sources. I told him that I was taking Warffarin to prevent DVT. He told me I could switch to a baby aspirin, which was in agreement with the medical literature. I switched in spite of my local oncologistís concerns. Warffarin can contribute to osteoporosis if taken for a long time. I also told him that Dexamethasone had a bad effect on me even in small doses [8mg/week]. He felt that the disease was stable and that my m spike of 0.9 was relatively low but that he would like it as low as possible before the transplant. He said I should continue with the Revlimid treatment. After he left, we had a lengthy discussion with his transplant nurse Muriel. She was very informative and gave us a very large binder about transplant procedure and care. The book was about three times as thick as the one from Duke. Muriel mentioned that Dr. Munshi liked to continue Revlimid after the transplant to suppress the cancer further. I didnít like this since I was trying to get off medication to relieve my neuropathy. I found that the literature is unclear about the benefits of this type of treatment. Muriel also discussed the outside possibility of not using a Hickman catheter but to use the veins in my arms. Although this is probably a bad idea, it made me think how important it is to maintain the main veins near the elbow joint. I decided to get blood drawn from the back of my hands to try to preserve the main vein for emergency use.
At the end of the day Muriel brought us to the outpatient center to get some blood drawn. It was about 3:00 p.m. so we had several hours before our plane was to leave. After a two-hour wait we discovered that our paperwork had not been processed properly and that no one knew we were waiting. I then went in to get my blood drawn. The room was in disarray so it was unclear where to sit, so I asked and was told with a grunt where to sit. I asked that she take the blood from the back of my hand. She didnít like this and tried to go after the main vein. After considerable discussion she agreed to use my hand. The nurse asked me to run my hand under hot water so I got up and walked around the room until I discovered a sink in the corner. I ran water on my hand for a while until it looked OK and sat down again. The nurse now pulled my hand down at a weird angle and turned my hand onto a 30-degree tilt, she then started to move the needle toward me like she was making a landing approach at an airport. I stopped her in mid air since it was clear to me that she didnít know what she was doing. I decided to leave and get the blood sample done someplace else. This created quite a commotion and soon, a supervisor appeared and asked if she could take the blood. I figured Iíd give it a chance. The supervisor kept on telling me what good people they had at Dana Farber and I kept telling her that this was not the case. Initially she said she would take the blood sample from the back of the hand but she kept on looking at my hand as it was not suitable. This was nonsense since I had at least 30 blood samples taken over the last two years from the back of my hand. Finally, she asked if she could use my arm, I gave her my bad right arm and she finished the job. At the end, she asked me to apologize because they do have good people. How can a supervisor provoke a sick person to the point of almost having a stroke? Later on, I found out why the phlebotomy department at Dana Farber prefers to use the arm rather than the hand. The vessels in the hand are smaller and fill up the vials slower. The main vessel in the arm can fill up 6 test tubes in 2 minutes while my hand takes 10. The department is usually very busy so staff is instructed to go for the arm first and if that doesnít work use the hand. On that particular day, the department was empty but the procedure was still blindly enforced. We made our way to the airport and were just able to catch our plane back home.
I returned home and the next day, I decided to call Duke, to see how things might work out there. I called Dr. Longís nurse and told her I was stable and asked what the next step was to proceed. She said that she would have Dr. Long call me but no one ever did. Dana Farber, however, started to move very quickly within a couple of days they had contacted the insurance company and another appointment and schedule was set up. Katherine McCormick replaced Muriel as Dr. Munshiís coordinator. After a few phone calls, I was able to get Dr. Munshi to talk to Dr. Keung. I continued with the Revlimid and tried to increase my once-a-week-Dexamethasone to 12 mg. I found that the neuropathy was getting worse and discussed it with Dr. Keung. He felt I should get a transplant as soon as possible and said that I didnít want to go in for it in a wheelchair. I called Dr. Munshi and was told to continue the dosage and tough it out. None of these doctors ever mentioned any possible treatment or relief from the neuropathy that was now moving into my right thigh. Fortunately, I came across an article on the web where Dr. Richardson of Dana Farber was discussing a treatment for neuropathy using natural products. He, however, did not mention the dosages. I called Dana Farber and asked Katherine McCormick if she knew about this. She said that she did and e-mailed their recommendations for neuropathy treatment. I bought from Nutraceutical Sciences Institute alpha lipoic acid 200 mg and acetyl L- Carnitine 500 mg, which I took once a day [www.gonsi.com] and L- Glutamine from nutrabio.com dosage 4 grams per day. This treatment reduced the burning from the neuropathy by over 50%. Several months later, I discovered that mono sodium glutamate [MSG] reduced the burning another 30%. I purchased Accent a food taste enhancer in the grocery store, it is 100% MSG. I have about 1 gram per day with my food [MSG can cause an allergic reaction]. The recommendations also included large doses of vitamin B, omega 3 and primrose oil but I felt they had no effect on my condition. A recommendation to increase magnesium to 500 mg per day proved helpful in sharply reducing muscle spasms in the bottom of my feet. Tonic water will also help with spasms but I couldnít stand the taste.
Dana Farber moved along promptly and soon, a whole schedule was mapped out. I was to stop taking Revlimid on June 8 2007 and I was to have preliminary test starting on June 16th. I scheduled an appointment with Dr. Keung for the beginning of June. I received my first dose of Zometa and a blood test to measure my m spike. Unlike Aredia Zometa produced a slight fever and bone pain for a day. My m spike was unchanged about .9. Dr. Keung said that Dana Farber would redo the test anyway, which was correct. I asked Dr. Keung for another bone density measurement, which costs about $200.00. He refused it and said that there was no way that he could justify the test to the insurance company. When I requested it, again he told me that it was absolutely and totally unnecessary and that it would take years for my bone density to improve and that Aredia and Zometa was all that was necessary. I asked him how can I know whether or not I am getting enough calcium to repair my bones. He immediately pointed to the blood test, which showed a 8.9 calcium level. However, proper levels of vitamin D and magnesium are also needed for the calcium to be used in bone growth. None of these tests were run so it is not possible to conclude that adequate nutrients are available for bone growth. I also mentioned to Dr. Keung the fact that taking alpha lipoic and l- Carnitine as Dana Farber recommended had helped my neuropathic pain. He dismissed the information as antidotal. I told him that Dr. Richardson had published a peer-reviewed paper on this topic but he continued to indicate that it was antidotal. I requested the bone density measurement from my other oncologist and the results were an 8% gain in my lumbar vertebra density in the last 6 months. The insurance company paid the bill just like they did for the other two tests. With this information, I decided that I could start to increase the size of the weights in my workout with less fear of a possible break. If bones are stressed by weightlifting they will grow to accommodate the increased load. The danger in this technique is obviously breaking a bone, especially a vertebra. I used very high repetitions 30 to 50 reps and avoided any exercises that put my spine in compression such as an overhead press with weight. In the beginning, I would do some exercises without any weight and then I moved to 3-lb dumbbells. I also did theraband exercises that the physical therapist had given me.
Dana Farber is not a hospital; it is set-up to do outpatient work and cancer research. The actual transplant and recovery is done in Brigham and Womenís Hospital. The two institutions cooperate but they are separate entities. I decided to check the quality of Duke and Brigham hospitals by using www.healthgrades.com. Brigham ranked in the top 15% of US hospitals in six areas: patient safety, cardiac care, cardiac surgery, critical care, gastrointestinal care, and pulmonary care. Duke only ranked high in one area -- stroke. Pulmonary problems and infection were my main areas of concern and it was clear that Brigham was much better than Duke.
I decided that I would go to Dana Farber and live in Boston for 3 months. I found a one-bedroom furnished apartment at Paragon Suites in Allston for $2500/month. It was about 15 minutes away by car from Dana Farber and had an elevator and central air conditioning. The air conditioning system is set up specifically for this apartment rather than having building air conditioning that is circulated throughout the whole building. This prevents the circulation of germs from other rooms in the building.
I arrived on June 14th and started my preliminary tests within a few days. The purpose of these tests is to determine whether the patient is physically fit enough for a transplant and to be on guard about any potential problems. The results of these tests were to be sent to my insurance company for approval before the transplant could begin. A schedule was established for the tests and a schedule was also set up for the transplant itself. The tests included an RVG scan to measure pumping capacity of the heart and an X-ray skeletal survey about 20 plus X-rays of the body. Also a blood test and 24-hour urine collection test, pulmonary function test to measure lung capacity and an EKG. In addition a discussion with a social worker and finally a bone marrow biopsy, this was all accomplished during a two-day visit to the outpatient clinic.
The transplant schedule begins with the placement of a Hickman catheter at Brigham and Women. To produce and mobilize a sufficient number of stem cells, I was given cyclophosphamide intravenously for 8 hours followed by an injection every day for 14 days with G-CSF, a stem cell growth factor. The patient then shows up at the Jimmy Fund department, which is part of Dana Farber. Upon arriving at 7:00 a.m. the patient is tested to see if the stem cell level is adequate for collection. If the patient is ready to go he/she is connected to a leukapheresis machine to collect stem cells. The process is repeated every day until at least two million cells are collected. In a day or so, a bed on the 4th through 6th floor of Brigham is made available. These floors have filtered air and a team of nurses that just do transplants. Shortly after arriving, the patient is given two lethal doses of Melphalan in less than 24 hours. Then, about 24 hours after the last dose of Melphalan, the patientís stem cells are re-infused and the waiting begins for the blood cells to rebuild. The time in the hospital will vary, but it is usually around 2 weeks. Afterwards the patient is treated as an outpatient and visits Dana Farber every week for the first month. Needless to say, if something doesnít work out, it can throw the whole schedule out of order. Both the hospital bed and the collection at the Jimmy Fund department can have backlogs so the timing is sometimes important.
My preliminary tests produced two flags and an inconvenience. My pulmonary test showed a 45% reduction of my lung capacity so Dr. Munshi scheduled a follow-up exam with a pulmonalogist from Brigham, Dr. Ann Fulbrigee. I met with her in an office at Dana Farber where we talked and she ran an oxygen uptake stress test. She was unable to pull up any of my X-ray data on Danaís computer so I gave her a disk of my X-rays and MRI from North Carolina. I also told her of some 4 year-old lung capacity tests I had taken before I was sick. She wanted to have them for a baseline so I told her Iíd get them. Another appointment was set up. The next day, I tried to fax Dr. Fulbrigee the test results but was unable to locate her at Dana Farber, as no one was able to tell me where her office was or her phone number. Finally, I figured out that she was in Brigham somewhere. I found a secretary and was forwarded to the pulmonary department. I was told to fax the data to some number in the department. It worked and at our next meeting, she had the information along with a conclusion about my lung problem. The condition would increase my risk during the transplant but not excessively and she told me that my lung tissue was all right but my rib cage had lost its flexibility to expand properly. She notified Dr. Munshi that things were okay, so the transplant could proceed on schedule.
I also had been scheduled for a bone marrow biopsy that day at 2:00 p.m. I showed up early but they were not ready. I kept on checking in because I had previously had experienced paperwork problems before. At 3:30 p.m., I pressed the nurse to truly find out what was going on. The PA who was to do the biopsy was nowhere to be found and no one knew where she was. I was placed in a room while the hunt continued. A little after 4:00 p.m. she appeared and apologized for being late. She was in a meeting and couldnít leave. I was then told that these things happen all the time. The test showed a 25% plasma load.
Dr. Munshi and Kathleen McCormick were schedule to go to Greece for an MM conference while I was having the Hickman catheter surgically implant at Brigham. Eleven hours before the operation, I got a call from Dr. Munshi, who was in Greece. He told me that the operation had to be canceled because I needed to go in for a psychological evaluation. I asked him if we could put the catheter in and then go for the evaluation the next day. He told me that it absolutely couldnít be done. I told him that everything would have to be rescheduled and who knew what would be available. He said he was sorry but there was nothing he could do about it. I started to try to figure out what had just happened. I had seen Kim Peterson -- a social worker -- over a week ago. The results of the meeting produced a concern on her part about my attitude toward suicide. Having those concerns, she rightly flagged me to be looked at by a psychiatrist. This was the purpose of the prescreening process. Unlike the pulmonary test, an immediate follow-up appointment was not made; it fell through the cracks. It was impossible for me to say who the culprit was as there were at least three people involved in the chain, with Dr. Munshi being at the end of the line. I decided that this snafu made it easier to change doctors, as I had been unhappy with Dr. Munshi for other reasons. Katherine Mc Dermott got the job of rescheduling everything and I must say, she did it very efficiently. Everything was shifted by one week. Patient Relations allowed me to change doctors without even giving a reason. My new physician, Dr. Robert Schlossman was assigned to me in two days. He had been given the task of taking care of all the MM patients while the other doctors were in Greece. The next day I went in to see the shrink. We talked for an hour and she decided that I was well adjusted and not a danger to myself or anyone else. I met with Dr. Schlossman who answered all my questions correctly. He had excellent listening skills and would come to the point very directly when answering. Over the weeks to come, I noticed that he was very concerned about his patients and he was exceedingly hard working and very competent but, as he has said, he ďis somewhat deficient in the warm fuzzy departmentĒ.
I entered Brigham first thing in the morning to get the Hickman catheter placed. Only two minor problems were encountered: the waiting room had poor ventilation so I sat in the hall to avoid any infections. After being herded down the hall with a group of patients that were going to have surgery, I was the only one who didnít have any paperwork so they didnít know what to do with me. The team that worked on me was lead by a PA and they worked very well together. I was asked a series of questions about medication I was taking and whether or not I had any allergies. Due to the deformity of my chest and back, they checked to see if they could get me on a respirator if need be. The operation was painless but I could feel them jerking the catheter around to get it into proper position. The main concerns with the catheter are: infection, pulling the catheter out accidentally and clots blocking the port. All these problems were easily manageable by keeping the wound dry, taking antibiotics, taping up the catheter so it canít get pulled and cleaning the port with heparin every day.
Mobilization started on Thursday with an 8-hour-long infusion of cyclophosphamide. The nurse wanted to also give me a small amount of Dexamethasome, which I objected to. I had mentioned to Dr. Munshi that this was a drug that made me nuts and I wanted to stay away from it but this information didnít get into my record. I also was aware that this drug was not necessary for the treatment, even though the nurse told me that it was. Soon Dr. Schlossman arrived. He listened to my concern and rightly said that we could continue without it. The treatment produced no nausea but it did tighten up my stomach for a week so I couldnít eat much. I also had two peculiar days of the hiccups, which lasted all day and would stop at night.
For the next 10 days, I had to go every day to Dana to get my GSF shot and the catheter flushed this included weekends. The first weekend, I was to get the bandage changed but the nurse had two problems. She didnít know why I was there and she had never worked on a Hickman catheter. It was clear that the computer system didnít have me listed. Soon, a more experienced nurse came and resolved the problem. I had to return to the clinic on the weekend four more times and the computer problem remained the same each time. I also noticed that the degree of sterility in changing the dressing varied considerably from nurse to nurse. During the week, the problem changed to one of loosing the paperwork and not knowing that I was there, which produced hours of waiting. Roughly 40% of my visits required over an hour of waiting and four of them over 2 hours. Before the GSF shots had started, I had asked Katherine McCormick if I could do this myself as I had given myself allergy shots for over six years. She said that the insurance company didnít allow it and wouldnít pay for it. As the problem worsened, I called the insurance company and spoke with a caseworker on my case. She told me that they had absolutely no objection to my doing it and why should they? I relayed this to Katherine McCormick and was told that this was the way they did it and it wouldnít change. However, Dana Farberís transplant manual supplies a book on how to clean a Hickman catheter. In addition, several nurses were surprised that I had to come in and asked why I wasnít doing it at home. I eventually met a patient who was, indeed, giving himself the shots at home. I also asked Katherine about the impact of chemo on sexual function. She said that she didnít know of any problems arising with any patients. The literature and Dana Farberís Manual mention sterility, possible loss of libido and reduction in hormone levels as a result of chemotherapy. Checking your hormone levels before and after treatment may not be a bad idea. Low hormone levels can lead to osteoporosis.
I started the stem cell collection process at the Jimmy Fund Department. On Monday, Tuesday and Wednesday, I had an insufficient CD34 stem cell count for collection to take place. On Thursday, my body just started to produce a small amount of CD34 cells and they collected a half million. The procedure was repeated on Friday with a yield of 800,000. The department is closed on the weekend so I returned on Monday for my final collection of an additional three million. It appears that my bodyís production cycle didnít correspond with their collection cycle. The procedure appeared to be very safe. The main side effect is quivering lips, which can be reduced by the addition of calcium to the blood. I, unfortunately, was very sensitive so the machine and had to be run at the slowest speed. Collection time was over six hours per day. There is a slight loss of red cells in the machine but a transfusion can fix this problem, if necessary. When I received a transfusion I also was given a Tylenol and a Benadryl. I found the staff to be very knowledgeable about the workings of their machines, as they had been using them for years. I had to say that this was the best-run department that I encountered during my transplant experience. I was wondering why they didnít continue to collect more stem cells so they could store them for a potential second transplant or if the first transplant failed. I never asked but I got the impression that they didnít want to incur the expense to store stem cells for years when, most of the time, it wasnít used.
I went into the hospital for the transplant feeling pretty good except for losing 5 pounds. I was admitted to the 4th floor of Brigham. The floor is positively pressurized as well as the rooms. The room was problematic for several reasons. The air duct was located in the center of the room and blew cold air down on the bed. The nurse knew about the problem and jammed the bed into the corner of the room when I complained about it. This partially solved the problem. The room was of an irregular shape and poorly designed, as there were inadequate drawers to keep personal items and no sink in the bathroom. For those of you who like scenery when you look out of the window, forget it. All that is visible is the air conditioning ductwork on the roof of the building next door and the sky if you lookup. Many of the controls on the bed didnít work so a separate box was supplied. I asked to see a physical therapist to get advice about proper exercise when my counts were low. It took four days for her to show up. I was told that she would come back with some equipment for exercise but she never returned. I also asked for a Reiki practioner from the Zakiam center to come. The nurses called but said that many times, the person wouldnít come. My wife then contacted the Zakiam center directly but no one ever came. Food was another big problem. Since I have allergies, I am limited in my food selection. When I would check items of on the menu, I found that 40% of the time there was a mistake. Either the item was left off or a different one was substituted. I started to hoard food because I didnít know when I would see it again. The nursing staff constantly rotated so it took a while to form any sort of relationship with the staff. I was visited every day by my team, which consisted of a PA who lead the exam and the conversation, a resident and the doctor on call. None of these people did I see at Dana Farber but the doctor was from Dana Farber. The team would disappear on the weekends and was replaced by a doctor who may or may not be from Dana. I never saw Dr. Schlossman in the hospital. This was not due to any oversight on his part -- it was the way the system was set up.
I was given two doses of Melphalan. There was no immediate reaction but in short order, I started to throw up. I had been given Zofran and anti-nausea medicine but it didnít seem to have any effect. Besides, I wasnít nauseous I just would spontaneously heave. Later I figured out that Zofran actually made me throw up and replaced it with Compazine, which made me hiccup but stopped the throw-ups. I would suggest that you take Tums before starting this process. Tums neutralizes the acid in the stomach and prevents the acid burns that can occur in your throat when throwing up. Normally, most people heal, but Melphalan will attack the lining of your throat, esophagus and, in fact, the whole alimentary canal. Although I didnít suffer from diarrhea, I had several days of dry heaves from my colon and my esophagus developed two very sore spots so I could not eat or drink for several days. During my stay in the hospital, my vitals and blood work were constantly monitored. My blood pressure, which is normally low 105/70 dropped to below 80/50 for several days. This concerned the staff but I felt no symptoms and I didnít worry about it. I also developed a low-grade fever that stayed just below 100 F. Finally, the fever edged up to 100.5 and my team started to look for an infection. They found nothing and my temperature dropped below the magic 100.5 range. Eventually, my white cell count went to zero. My platelets dropped to 6000 and my red cell count was low. At this point, I was very vulnerable to infection but I had been taking antibiotics, anti-fungal medicine and anti-viral medication for shingles. All that can be done is to wait for the counts to go up. Eventually, I would get a transfusion but there was a reluctance to do this since this can discourage the body from making its own. On the 13th day, my counts started to go up. By the 15th day, I was up to 2000 WBC and my platelets were over 50,000. As soon as my counts started to rise, the pain from the sores in my throat and esophagus decreased and I started to heal and I was able to eat much more. I went back to my apartment and waited for my check-up in a few days.
The fever that I had in the hospital came home with me and within three days, it went to 102.5 along with some violent shakes and an elevated pulse rate. On Friday I was back to the emergency room at Brigham -- the last place I wanted to be with a shaky immune system. The emergency room did a good job of getting me into a properly ventilated room and wearing masks but they couldnít find me in the computer so I was treated as a new patient. They ran an EKG but, of course, they had nothing to compare it to. The doctor saw a right bundle branch block but could not tell if I was having a heart attack or whether it was normal for me. Four hours passed and they finally found a room for me on the 12th floor. This was not the transplant floor because all the beds were filled but it was set up for patients with infectious diseases. The rooms are positively pressured and the staff takes precautions using masks and gloves. The 12th floor had a much nicer view but unfortunately, they could not access any of the information from my previous stay on the 4th floor. The staff and doctors were totally different than on the 4th floor so it was hard to say if they knew what was going on. They started cultures on anything they could get a sample of. I was also receiving two types of antibiotics: Vancomyocin and something else. Within 24 hours, the ďsomething elseĒ gave me a rash so it was discontinued. The next day, I was transferred to the 4th floor where I encountered a whole new group of nurses and doctors. I was starting to get concerned that I might be getting pneumonia again and asked the weekend-doctor-on-call if she knew Dr. Ann Fulbrigee. I asked her if she read my file and I was told that she didnít have the time to read all the patientsí files and knew little about my case. In talking with her further, she told me she was a kidney specialist and was filling in on the weekend and not many specialists were available on the weekend. A CAT scan, X-rays and cultures ultimately showed nothing but the fever stayed. On Sunday night, my chest muscles were noticeably tighter so I decided to take a Valium. To my surprise, my fever totally disappeared and never returned. I returned back to my apartment and was back into the normal blood count range within a month. I started to go for walks for 30 minutes and slowly started to gain weight. My wife tried to get copies of my medical records from Dana and Brigham but, in spite of three trips to the record department, she still lacked a couple of tests. The records clearly showed that the ECG and X-ray data were not available when a comparative history was needed.
The Melphalan had given me an acid reflux problem that I treated with Nexum and Tums for two months. I will continue to take 400 mg of Acyclovir three times per day and 5 ml of Mepron twice per day for the next year. I take Mepron instead of Bactrim because I am allergic to Bactrim. My m spike dropped to 0.38 and my IgG was about 700 after the first month. I was told that they generally use the 6-month m spike reading since values jump around for a while. After the first month, I noticed that the muscles in my back relaxed some more and I gained another inch in height. I am now a tad over 5 feet 8 inches. After 5 months, my WBC is 4800, platelets 122,000 and Hemoglobin 14.8 and IgG 780. Platelets are a little low but anything over 100,000 is sufficient for major surgery. Melphalan has made my neuropathy worse in the areas that were already damaged but it has not spread to other areas. My bilirubin count has not returned to normal and runs around 1.8. I donít know whether this is due to damage of my liver or premature deaths of my red cells. Although I donít work anymore, I do believe that I could have gone back to work after two months. Since I still have no IgG, my immune system is still weak. From the literature it is clear that patients have a long process of recovering the full function of their immune system after a transplant. Blood tests that count the number of cells are not the whole story. The number of killer T cells, CD4, CD8 and other cells plus IgM, IgA and IgG give a fuller picture of what constitutes a full recovery. So far, I have had two colds and have recovered just as fast as other family members but the second cold was a re-infection of the first. The immune system is a very complex system and is not fully understood, so the only real test is to get sick and see what happens. I continue to lift weights and walk 1.25 miles in 20 minutes. In my dumbbell exercise program, I use weights in the 5 to 20 pound range. For several days after exercising, my muscles are tense and ache, especially, in the areas of bone damage. My hair stopped growing and some fell out but it is now growing back much thicker than before and my bald spot has decreased. It appears that Melphalan is much more effective than Rogaine!
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