Loerrach (Germany); email@example.com
1959 / Class of '05 / Type: IgD /
auto + allo transplants, complete remission / Updated: 2/10
auto + allo transplants, complete remission / Updated: 2/10
I am living with my family in Loerrach, Germany, very close to the border of Switzerland and working in an multi-national corporation in an office environment in Basel, Switzerland for almost 20 years, with the exception of 4 years in New Jersey and New York.
I always enjoyed good health and could rely on a strong and durable body. I took my bicycle to work every day and was jogging regularly. However, in summer 2004 I experienced some kind of pain in my upper back and a few ribs. Nothing serious, I thought, this will disappear soon. And it did, however return at other locations, for example in the breast bone and the shoulders. Again, it was mild pain and I continued to ignore it. In fall 2004 I recognized that my pillow was wet of sweat every morning. Well, I thought this was a result of a stress full job at the office and ignored the sign too. Nevertheless, the back pain was worsening continuously. End of October 2004 when I was lifting something heavy I experienced a strong crack and sharp pain in the breast bone, the sternum. Obviously, it was time to visit a doctor. Beginning of November I saw an Orthopedist to deal with the pain in the back and breast bone. He did a couple of checks and came to the conclusion that the problems were related to the office work and spending too many nights on business trips in planes. He prescribed massages and kinesitherapy. I kept my appointments diligently and did all the home exercises. However, things did worsen rather than improve. The Orthopedist did not have anything else to offer. I felt like getting stuck. I got the nagging feeling that something more fundamentally was wrong. The Christmas break was overshadowed by increasing pain. I felt awful. In January 2005, the back pain was not tolerable anymore, and I went to a doctor specialized on pain treatment. She ran an extensive check of the blood values - that should have been done months ago - and had bad news when I returned to her office on January 31st. My blood showed an extraordinary high level of a para-protein that didn't belong there. More analysis showed that it was an immune globulin of type IgD, a rare MM type. I was also sent to a CT body scan. The pictures revealed multiple lesions in the spine, sternum, scull, and other bones. The diagnosis was pretty clear: Multiple Myeloma.
I was admitted to the Basel University Hospital the next day. A bone marrow biopsy confirmed the diagnosis and revealed a bone marrow infiltration with plasma cells by more than 80%. They also found that the kidneys had been impacted already. To make things worse, a couple of days later two of the vertebrate collapsed causing additional severe back pain. I was overwhelmed by bad news.
I was put on 4 cycles VAD chemotherapy (Vincristine, Adriamycin, Dexamethasone) from February to May 2005. The first cycle was done at the hospital. Three more cycles followed as outpatient. Fortunately, I tolerated the treatment relatively well. The 4-day Dexamethasone pulses put me on temporary hypes with almost no sleep. However, things normalized quickly afterwards. I also received effective pain medication to deal with the back pain. The first good news came in: The IgD level decreased steadily showing that my disease was chemo-sensitive. After four VAD cycles I was in partial remission. Overall I felt better and more energetic, got back to work, and began to research my disease diligently. Scientific papers about MM, stem cell transplants and related topics were piling up at home. I found an excellent local Oncologist in my home-town who teamed up with the Basel university hospital and managed the out-patient portions of my treatment. In addition, I received very good physiotherapy on a regular basis which helped a lot. I never got entirely rid of my back pain but over the months found ways to deal with it.
My wife and I began to think about the changes to our live this disease would require. We got counseling which we perceived as very helpful. Our life changed in a sense that we enjoyed quality time with the family much more explicitly than before. Every moment was valuable time that had to be treated with care, and we found a good approach to do so. Summer arrived, and compared to the new years break my situation looked much more promising. In a way it felt like we did everything we could to deal with the changes as comprehensively as possible.
The next treatment steps needed careful planning. The doctors told me that the bone marrow had a significant portion of cells showing plasmablastic morphology, one of the risk factors indicating poor prognosis. Therefore and based on my good health performance we decided to go for a tandem transplantation regimen, an autologous transplant followed by an allogeneic midi-transplant. The purpose of the autologous transplant was to reduce or eliminate the tumor burden while the allogeneic transplant should equip me with an immune system capable of fighting the tumor cells. Fortunately, one of my brothers was HLA identical and available as stem cell donor.
The autologous transplantation took place in July 2005. Stem cell apheresis worked well and yielded a good harvest of CD34 cells. I received high-dose chemotherapy with melphalan followed by the stem cells a day later. It was a tough time in the hospital, however I recovered quickly. This time I lost my hair, and my wife said that I was looking like a typical cancer patient. After two and a half weeks at the hospital I could go home. Over the next couple of weeks the blood values returned to normal. I regained my strength quickly and returned to work after 5 weeks by mid August. The next bone marrow biopsy confirmed that the autologous transplantation was successful and put me into complete remission. This was very good news.
The allogeneic transplant was scheduled for October. This treatment promised a cure to the disease, however I was very much aware that in spite of all medical progress this type of transplantation has significant risk involved. Infections or graft-versus-host-disease might cause complications or even fatal outcome. So it was a conscious decision to go for it balancing the risks and the benefits.
The treatment schedule gave us a break of two months which we used to enjoy live and prepare ourselves for what was coming. It was a great time with a week vacation on sunny Cyprus and many week-end trips with the kids.
I was admitted to the hospital beginning October, however sent home again due to a mild flue that was harmless in itself but could cause trouble under transplantation conditions. Two weeks later, by mid of October, the procedure began with reduced intensity conditioning over 6 days (the Seattle protocol) comprising fludarabin, busulfan and anti thymocyte globulin (ATG). The treatment caused a couple of difficult days at the hospital with high fever, vomiting and other side effects. Nevertheless, it was less tough compared to the Melphalan treatment before. Then my brother arrived and went through the same stem cell aphaeresis I had a couple of months before. The procedure was successful and I received the stem cells from my brother the same day. My blood values took a deep dive and recovered slowly, much slower compared to the autologous transplant. Nevertheless, after staying three weeks at the hospital I could convince the doctors to let me go home.
I am now 3 months post-transplant. Most of the blood values returned to normal except for low hemoglobin. That is just a matter of time, the doctors said. The chimerism analysis was 80% after 4 weeks and showed that the engraftment was successful. I am in particular happy about the fact that so far there are no signs of graft-versus-host disease. And I am still in complete remission. I returned to work on a part-time basis and plan to get back full time soon. I am still experiencing back pain problems, nevertheless, the impact on my life is minor.
Looking backwards, the MM changed a lot in my life and that of my family. It was a long journey that got us to the point where we are today, and the journey will continue. MM is an aggressive and life-threatening disease. Nevertheless, I feel lucky and very grateful for all the help and support I found, first of all my wife and my family, then many friends and also all my colleagues and superiors at work who supported me without any questioning. The team at the Basel University Hospital and my local Oncologist did a fabulous job. In fact, the team work across country borders worked extremely well.
The disease has two sides, a threatening and cruel perspective one needs to look at, but also an opportunity for changes to the better. I consider it my task to identify and work on these opportunities and actively work and contribute to my destiny. I wish anybody who has to deal with this disease has lots of energy and outstanding success fighting for your life and your future.
September, 2006: Itís almost a year ago that I went through my 2nd transplant, a mini-allo transplantation. When I returned home in November last year the leukocyte count was pretty low but recovered slowly over the next 6 weeks. Just when I thought that things would get back to normal the hemoglobin level began declining steadily. The doctors said that this was due to the transition to the new blood group of the donor, my brother. There were still remains of the old immune system fighting the new erythrocytes. Obviously it took my body some time and effort to adapt to the new stem cells. The doctors told me that this could last for up to six months, nevertheless always returns to normal over time. From January to May this year I got infusions of erythrocyte concentrate once or twice a month to keep me in reasonable shape. Originally I was trying to avoid these transfusions however got extremely weak and finally gave in. In fact, the transfusions helped a lot.
Over the weeks and months my life slowly returned to something like normal. I still saw the hospital once or twice a week. The medications were Cyclosporine with continuously reducing doses, Zometa once a month and a few other pills for infection prophylaxis. Overall I felt okay. There were only minimal signs of GvHD, e.g. slightly elevated liver values, occasionally dry eyes and sometimes sore spots in the mouth. All of that was easy to tolerate and never posed a real problem. In the meantime we stopped Zometa and most of the infection prophylaxis and will likely discontinue Cyclosporine soon. I'm taking daily vitamin supplements ... just in case this is of any good.
In January I returned to work almost full time. People said that this was pretty early, but I enjoyed focusing on different topics and slowly got back into a busy work schedule. The 3-months check in February brought very good news: I was in full remission with no signs of Myeloma cells in the bone marrow or monoclonal IgD in blood or urine. This was great relieve to me and my family. It was so good to get back to a daily routine, focusing on work and enjoying spare time. In fact, I carried out an old dream and bought a motorbike right in time for the summer season. Hemoglobin remained very low though which frustrated me at times. Finally, end of April the hemoglobin levels began to climb. There was no need for infusions anymore, and I began feeling much stronger. Since May this year I resumed exercising and began riding my bicycle to work as I did before the whole thing started. Since then the hemoglobin levels returned back to normal. Iíve got a new blood group by now. In May this year the 6-months check came up and confirmed full remission, again very good news.
Overall Iím feeling well and enjoying live as much as I can. We spent 2 weeks summer vacation in sunny France and had a great and relaxing time. Early this year I had an opportunity to change to a different position at work, focusing much more on content and substance rather than hierarchy and management. In fact, this change added much to the quality of life. Occasional business trips are still required, and usually I am enjoying these trips. A remaining topic is still recurring back pain from time to time. Regular exercise is required. Also, my broken breast bone never returned to its original shape and always reminds me of what I went through.
My wife and I are well aware that the risk of the MM returning is still high, and it never feels like the whole thing is over. However, we focus very much on good quality of life and enjoy every moment we have together and in good health. I am very grateful for the positive course of the disease so far and wish all fellow patients similar encouraging developments. If I can provide any more information please don't hesitate to contact me.
December, 2007: Two years after the allogenic transplantation, I just completed the full set of checks, and I am very happy and grateful to report that everything is fine. I am continuously in full remission and at good health with all blood values within normal ranges! No further signs of GvHD. Currently I am having Bondronate every 10 weeks but we may want to discontinue that soon. It was a very good year. I am enjoying every day of my life, busy at work with many trips around the world, lots of hobbies and, most importantly, plenty of quality time with my family and friends. Best wishes to all fellow patients.
February, 2010: It is now 5 years after the diagnosis and more than 4 years after the allogenic transplantation. I am just returning from my annual check up with excellent news like in the previous years. All the lab works and MRI scans are fine and without any concerning results. I am in complete remission and do not take any medications. They changed the frequency of check ups to an annual schedule Ė excellent news. Overall, I am in good health and very glad and thankful for the good course the disease and treatment have taken.
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