Patient Stories

Paraneoplastic Patient Stories Just as every person is an individual, each person's experiences with a paraneoplastic neurological disorder will vary. The stories shared below were written by either paraneoplastic patients or their loved ones in an effort to share a bit of their experiences with other patients and caregivers. They should not be viewed as statistically relevant but merely as personal stories. Eleanor (Canada) My story began in the summer of 2001 when I started listing to the left, falling, etc. My symptoms got increasingly worse, with slurring of speech, vision problems, ataxia, loss of fine motor control, falling, etc. An MRI indicated atrophy of the cerebellum. After a two year search for a diagnosis, I was seen by two neurologists at the University of Western Ontario who felt my symptoms were caused by a paraneoplastic disorder and that we should search for an occult cancer. I had previously been treated for invasive breast cancer and another suspicious lump some nine years previously, as well as some skin lesions which were indicative of squamous and basal cell growths. I was also told that my thyroid was malignant. The doctors told me that the condition was untreatable and that I was "terminal" because of the neurological condition. I persevered and got second opinions and eventually had the malignant thyroid removed. Since then, the neurologist and I feel that things have improved substantially. With the help of friends who are physical therapists, I have developed an exercise routine for myself and also get voice therapy, massage therapy and practice meditation and relaxation exercises. While I remain symptomatic with he paraneoplastic disorder, my husband and I have managed (with all precautions) to travel to France, Norway, and take a cruise to the Panama Canal. Anyone facing a paraneoplastic disorder needs to keep an open mind and keep the physicians who have never seen this disease informed. Jennifer's mother (USA) My mother was hospitalized in December 2002 with a bronchial infection. A month later, she began experiencing double vision and vertigo. She became nauseated and was treated for the flu. Two weeks later, her symptoms worsened and she was scanned for a stroke, which turned out negative. Several weeks after that, she was sent to the Mayo Clinic where she was diagnosed with small cell lung cancer and paraneoplastic cerebellar degeneration. She spent a few weeks in the neurological ICU experiencing seizures. Before leaving Mayo, she received 3 plasmapheresis treatments. Since that time, my mother has been in and out of the hospital more times than I can possibly count. We tried a few more plasmapheresis treatments, but no improvement occurred. She underwent 4 sessions of chemotherapy and 6 weeks of radiation. She barely made it through the radiation, but bounced back pretty well once it was over. Two years into the diagnosis, her speech is quite affected. Due to vision and balance issues, she is unable to walk, although caregivers get her up several times a day to shower, eat and use the toilet. She is ataxic and shakes a lot, so she needs help with feeding and personal hygiene. Her long term memory is pretty good, but her short term memory is failing. She still recognizes everyone, but doesn't participate in conversations, just listens. A recent lung scan came back clear, so the cancer appears to still be in remission. I didn't think we would make it through the first spring, so the fact that we have completed over two years is amazing. Marty, USA I had ever test known - even a few experimental ones- after my paraneoplastic symptoms began. A neoplasm (cancer) just didn't show! I remember one time they were so certain they'd find it that a surgeon was standing by. Everybody-including me- was astonished not to find it. Finally my oncologist said that they knew antibodies (in my case ANNA) were running wild in my body, had broken through the blood-brain barrier, and were destroying the Purkinje cells in my Cerebellum. So they put me on a Cytoxin chemo regimen in the hope that it would destroy any hidden (occult) cancer and certainly those pesky antibodies. It worked! And put me in the static condition I'm now in, five-plus years later. Barring a miracle, I know I'll never get better, but no worse either. My now unproveable, but strongly suspected, supposition is that the anti-bodies had been present but harmless since my successful bout with Squalors-cell Carcinoma of the tongue back in 1980. Harmless until job stress in 1996-1997 sent them on a rampage called paraneoplastic cerebellar degeneration. Sandy USA In November 2003 I began feeling dizzy sporadically and itchy and tingly on one hand and arm. Shortly later I developed shingles along the nerve of one eye. Blood tests and a brain scan were normal. One day I became so nauseous and dizzy I couldn't move. For one week I had every conceivable test and scan performed. By that time I was ataxic in one leg and arm and had extreme nystagmis in both eyes. One eye was almost totally closed. A PET scan revealed a malignant metastasized lymph node in my groin pointing to a gynecological cancer. A specialist diagnosed me with PND anti-yo. Removal of the node and a subsequent hysterectomy did not reveal the source of the cancer. I was administered IVIG and prednisone and improved substantially. The nystagmus became less extreme and I was able to walk with a walker and have use of my left hand. A subsequent dose of IVIG had no effect on me. In February, I began experiencing a speech problem and some difficulty with swallowing and drooling. I enrolled in the clinical trial at Rockefeller University and was administered Tacrylimus. It is my believe that it helped but did not eliminate the speech problem. It did eliminate the swallowing problem. I am currently undergoing Chemotherapy and hoping to stay stable during this period and proceed with aggressive physical therapy after. As a general note, I am in good spirits. I spend times with friends, go to the movies on off hours, and I'm grateful to be able to enjoy the many things I can do rather than focus on my limitations. Kirby, USA I began experiencing symptoms of Paraneoplastic syndrome a week after Labor Day 2003. The onset was sudden and the symptoms spread very rapidly. I developed jerking and shaking which were constant and could not be controlled or stopped by any medication that we tried. By December of 2003, I was no longer able to drive safely. My neurologist recommended I see a movement specialist and I was successful in making an appointment with the Movement Clinic at Ohio State University. Further tests here included a paraneoplastic screen which showed the presence of one antibody. In the spring of 2004, I was referred to the Oncology department at Ohio State University. Dr. G. Otterson there has been my primary physician ever since and has some experience with paraneoplastic problems having treated approximately 10 patients with the disorder. Dr. Otterson consulted with Dr. Posner at Sloan-Kettering and the Mayo Clinic before starting me on a very aggressive immune suppression program. In June of 2004, I began taking 100 mg. of prednisone every day. After about three weeks, the Myoclonus began to disappear and I have been relatively movement free ever since. In the meantime, I have continued to experience problems with my voice and am experiencing some weakness and numbness on the left side of my body. I have an ongoing series of X-Rays, CT scans, MRI's and other tests to look for any signs of cancer. As of yet, none have appeared. It is Dr. Otterson's opinion that we are likely to eventually find the cancer and most likely it will be small cell lung cancer. Christl, Spain I was 61, a mountaineer with 35 years of teaching yoga - very fit - when on the 8th of August 2000 a tumor was removed from my left breast. A week later, I suddenly felt nauseated and suffered a bout of strong vertigo. My legs also became very weak. At the hospital, they called it anxiety and gave me some pills for the vertigo. On the first of September 2000 my breast was removed and the nausea and vertigo were with me all the time. In October, chemotherapy was started and I began t see everything double. No doctor could help and my legs got more and more difficult to move. My local doctor said I was suffering from depression and put me on Rexer. In a week, I was more relaxed, but nausea and vertigo made my life unbearable. In June 2001, I went to a German hospital where I was told I had paraneoplastic cerebellar degeneration but that they could not do anything for me. They sent me to another doctor who treated AIDS and MS patients with I.V.I.G., but it did not help me. In September 2001, my American friend here in Spain found out about the PCD email support group in the USA and I was glad to learn I was not the only one who had PCD. Slowly my vertigo and nausea disappeared, but my legs got worse. I fell very often and once I was unconscious for 4 days. My neighbor bought me a wheelchair. Everybody told me to think positive and you will walk again - that never happened. However, I have been able to travel in Europe, to Egypt, and, with the assistance of an aid, to Mexico last year for several months. Ellen, USA My mother's first symptom occurred when she fell while crossing the street. Over the next four to six weeks, her legs weakened and her balance worsened. Her primary care doctor had no idea of what was causing her symptoms and sent her to a neurologist. The neurologist suggested everything from a stroke to Lyme disease, but never mentioned paraneoplastic syndrome. Over the next six months, her condition worsened. During this time she had two full body scans because she was also complaining of a slight pain in her stomach. An alert radiologist noticed on the second scan that one of her abdominal lymph glands was very slightly enlarged. At that point, her primary care doctor referred her to an oncologist who did a biopsy on the lymph gland and discovered squamous cancer cells. My mother had had squamous cancer of the larynx 25 years before this and had been cancer free during that entire time. The doctors were never able to determine if this was related to the original cancer or a new type of cancer. Over the next three years, my mother was on chemotherapy almost constantly. The cancer in her lymph glands never spread but her neurological deterioration continued with periods where she seemed to stabilize. Besides the chemotherapy, my mother did not have any other treatments specifically for the paraneoplastic disorder. Through sheer determination and with the aid of a walker, she was able to keep walking for the next three years. In the last six months of her life, her neurological problems accelerated where she needed help with all of her daily activities on a 24-hour basis. When tests showed that the cancerous lymph gland had grown, she opted not to continue with chemotherapy. Eight weeks before her death, my mother finally agreed to call in hospice. This was an enormous blessing for us. The hospice workers understood my Mom in a wonderful way and were very helpful to me as well. After being in a coma for ten days, my mother died peacefully in a hospital on July 18, 1999. The primary cause of death was the spread of her cancer, although the paraneoplastic disorder complicated matters. Mara, USA The type of ovarian cancer I had was the rarest of them all - an immature teratoma. It was the kind that grows very quickly inside the ovary. It's most associated with teenagers, but I was three months shy of 29 when my symptoms first came about. I like to tell myself that my body actually thinks I'm just 16. In December of 1998, it felt as though my pants were a bit tight. But, hey, I'm female, so I just thought I needed a diet. The day after New Year's, I felt dizzy. The dizziness persisted and quickly became worse until January 10, when I was put on full bed rest by a doctor who thought I had an inner ear infection. On January 14, I could feel periods of depression and euphoria and I was becoming very forgetful. On January 16, I was rushed to the ER because I was in such a manic state that my mother thought I was going to completely lose my mind. In the ER, I ripped the IV lines out of my arm, and tried to escape by walking down the halls unaided, but I just kept falling into a heap on the floor. The rest of the month of January is a blur. For days I didn't know where I was or who I was. It was the most horrific nightmare; I can't even put words to it. On January 31, I had surgery to remove one ovary. The cancer had not spread to my fallopian tubes or to the other ovary. I was released from the hospital on February 9. By then, my mind was better. I still could not walk unaided, but I was getting better every day. My March 1, I forced myself to go back to work. I believed that forcing my brain to function would help me more than being in a bed. I started chemotherapy in early April. It is important to note that 95% of my recovery had already occurred. It was the surgery that helped the most. I am now fully recovered and have been in remission for six years.