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The purpose of developing this Web Page is to give hope to others that have been diagnosed with this rare cancer. I am the wife who watched my husband's remarkable journey of beating the odds and his experience of going into full Bio-Chemical Remission. The dialogue includes symptoms, diagnosis, surgery, secondary immune system complications, and general information regarding the I-131 MIBG Experimental Treatment. His story is unusual in that the standard symptoms of the Pheochromocytoma did not appear until later in his illness. I think you will find his story inspirational and I encourage you to take the time to see that "miracles do happen".  Our story begins in the middle of April 1999, we were married in the middle of March 1999. My husband manages a Manufacturing business that is located in Central California. He started to experience lower back pain after volunteering his time to barbecue a lunch for over two hundred employees. The lower back pain continued and in August 1999 he made an appointment with a doctor. At this time he was diagnosed with a back strain and was given Ibuprofen as well as a regimen of Physical Therapy. The lower back pain worsened and he was prescribed a mild narcotic to help with the pain. His abdomen became swollen at which time he requested an Ultrasound to be performed. On September 29, 1999 he also had an appointment for an abnormal blood test that reflected high protein. The ultrasound found an abnormality and a CT scan followed on the same day. After the CT scan we waited to find out if any further testing was required, to our surprise a wheel chair showed up with a Technician stating that "I don't want to alarm you however I need to take you to the Emergency room and the doctor will explain more to you once you arrive there." The Emergency room doctor informed us that Ken had metastatic cancer that appeared to be attached to three major organs the liver, pancreas and kidney. The purpose of being brought to the Emergency room was to have another Ultrasound done to confirm that one of the tumors was not pressing up against the aortic artery as this could be fatal if certain measures were not taken. We were given ten minutes to absorb what had been told to us prior to being transferred to another room for the test. At that moment the news did not seem real, I couldn't understand how the doctor would know that the cancer was metastatic without a biopsy. Prior to this experience I had never dealt with family or friends with cancer, later I would learn that more than one tumor typically is evidence that the cancer is not benign. My husband looked at me and said "I want you to promise me that you will laugh with me along the way no matter how bad it gets" and that "God has a plan for all of us and how ever this turned out that there would be lessons learned along the way; just trust in him". He was wheeled in for the Ultrasound , the Technician had difficulty determining if the tumor was obstructing the artery and asked that the Radiologist doctor to come in and complete the test to confirm that Ken was not in any danger. The test was confirmed that the aortic artery was not being obstructed by the tumor and Ken was released. The day was long as we were at the hospital from 10:00 A.M. to 11:30 P.M. and the last thing we would have thought was that the news we would be walking away with would be so devastating. He insisted on driving home himself as he told me that "if this diagnosis is correct pretty soon certain freedoms will be taken away from me and I want to stay as independent as I can until that happens". We were told to schedule an appointment with an Oncologist and more information would be given to us at that time concerning the diagnosis. On October 2, 1999, we met with the Oncologist and were informed that Ken had pancreatic cancer and was given less than thirty days to live with a 1% survival rate. He hung his hat on the 1% possibility and kept a positive attitude. A CT guided biopsy of the liver followed and the Pathology results showed Malignant Andenocarcinoma. His first chemotherapy session was on October 7, 1999 with 200 MG of Taxol. During his chemotherapy treatment we made contact with another Oncologist and explained Ken's diagnosis, he asked for a CT scan of the back and a full body bone scan to take place on the same day. He also would receive a Upper Endoscopy test to rule out whether cancer had spread to the stomach. On this same day we met with a different Oncologist that requested the CT of the back and were told more bad news. The spinal CT showed a large tumor in the lower back that was pressing up against the spinal cord with deterioration to the bone. The doctor explained that paralysis could be an issue and he felt the best treatment at this stage would be to receive radiation to the area to reduce the inflammation of the tumor size and possibly prevent paralyzation from the waist down and continue with chemotherapy to make "life comfortable" for the next three to six months. The diagnosis was changed too Metastatic Andenocarcinoma of an unknown source. A consultation followed with a Neurologist and the Radiation doctor to confirm the approach of radiation vs. surgery. We also received a phone consultation from a well respected doctor from Stanford University's Neurology Department and he concurred that the surgery should not be considered at this time. The second chemotherapy session was on October 14th with 150 MG Taxol and his first radiation treatment to the lower back took place. On October 15th 1999 he received his second radiation treatment and had a CT scan of the head and neck done. The evening of October 15th Ken felt his blood pressure elevate and monitored it through the evening and early morning with a home blood pressure machine. The Systolic reading was as high as 220 with a pulse of 145. We took him to the Emergency room and he was admitted to the hospital on October 16, 1999. I was told by the Emergency admitting doctor that the results were in for the head and neck CT, a tumor was found in the upper spine at the neck and an A-line fracture existed. Prior to this diagnosis my husband had never been ill and appeared to be a healthy individual. The days and months ahead revealed that a fighting spirit, a positive attitude, faith and support from a loving wife and family can carry you through the most difficult times The first week he was very ill from the two doses of chemotherapy and literally lost about 50 pounds within a weeks time. While hospitalized he refused a third dosage of chemotherapy because of how toxic it was to his system and he was afraid that another dose would worsen his condition. He wanted to get a second opinion prior to undergoing further chemotherapy sessions. He would stay hospitalized for twenty two days and during this time would discover a new diagnosis. His symptoms started to intensify during the hospitalization. He began having extreme orthostatic blood pressure issues with position changes. The Systolic pressure would go as high as 280 and as low as 50 within minutes of position changes (example: lying to standing, sitting to standing etc.) in some cases he would lose consciousness. He also experienced sweats where his linens would have to be changed several times a day. These symptoms had never existed prior to receiving the chemotherapy. Each morning he would have to be transferred by ambulance to a cancer center for his radiation therapy, a nurse would accompany him in the ambulance should his blood pressure spike. One morning the blood pressure spiked outside of the hospital prior to being put in the ambulance. Our doctor was paged to come down to the ambulance to assess his condition. The doctor told Ken it wasn't safe to be transferred that morning for radiation treatment. Ken explained that he could not miss a treatment because of his chances of being paralyzed without the reduction of the tumors in his neck and spine and asked the doctor if he would ride over in the ambulance. The doctor explained that he had never done this for a patient before, however he would make an exception. The next morning the very same thing happened and the same doctor was on duty. He explained to Ken that he could not ride over in the ambulance due to time constraints, but agreed to have a family member drive him to the cancer center and back to the hospital. It was this second observation of Ken's symptoms that a light came on in the doctors mind. He elected to run the 24 Hour Urine test, fortunately he had seen a case like this thirteen years prior when he was an intern. The test confirmed his suspicions, Ken's Metanephrine level was 26,541 ug/tv (normal levels should be 40-300), Nor-Metanephrine level was 29,255 ug/tv (normal levels should be (60-600), and Catecholomines 13,200 pg/ml. To control his blood pressure fluctuations he started Demser , a rare blood pressure medication from Merck Pharmaceutical. At one point he was taking the maximum dosage of 4000 MG daily to control blood pressure fluctuations. I started using the computer at the hospital to access the Internet to learn as much as I could about the disease. There were case studies that were performed in foreign countries with the I-131 MIBG treatment, however the statistics did not show a high success rate. The information provided a glimmer of hope that maybe there was a treatment for Ken that could temporarily help him. He told me as long as I can make it for another year or two there are great advances happening with cancer treatments and maybe there will be a cure. We stayed as optimistic as we could and waited until Ken's health stabilized to get a second opinion at a "Tertiary Care" hospital. We were told by our primary doctors that there were no known treatments for the cancer. We missed the first appointment at Stanford Medical Center on October 25, 1999 as Ken was still hospitalized and not stable enough to be moved. We secured an appointment for November 17, 1999 although when we arrived we were told the appointment was for the following week. Through perseverance we asked if there was a slot open for his case considering how ill he was and were told by a very kind receptionist to come back later that afternoon. To our surprise when we arrived we found out that his case would would be reviewed by the Tumor Board that was meeting on this day. As we patiently waited for the second opinion, I looked at my husband in the wheel chair, 149 1/2 pounds, and the weakest that I had ever seen him and prayed for good news. We met with the Oncologist who told us that he had referred one patient to the University of California San Francisco Medical Center with this same disease and that the patient had success and went into full bio-chemical remission after undergoing the high dose I-131 MIBG treatment. The first step would be to have the primary tumor resected and undergo a MIBG Scan to see if the tumors had the proper uptake of the iodine to qualify for the experimental treatment. The meeting gave us a glimmer of hope and my husband even more determination to not give up. The current radiology reports showed a 8X8X7 CM mass above the kidney, liver had multiple tumors the largest mass measuring 7.6X8X6 CM, lower spine T12 with a tumor of 3.5 CM in greatest diameter, C6 upper spine metastasis, and small tumors in the lobes of the lungs. The next step was to meet with the Endocrinologist to get the MIBG scan scheduled. We were fortunate to describe the case directly to the Endocrinologist and he requested that Ken be in his office in afew days. We are thankful for the compassion that the Endocrinologist showed for my husband's case, without his strong work ethic and knowledge of this disease Ken probably would not be here today. On November 20, 1999 we met with the Endocrinologist to receive an exam and to go over medical history. He explained that he would do everything he could to make arrangements for the preliminary MIBG scan and determine what course of action to take first, whether the primary tumor would be removed or whether the treatment occurred first. Ken landed back in our local hospital on November 28, 1999 with a fever and was treated with antibiotics and discharged so that he would not miss his appointment in San Francisco. We met with the Endocrinologist on December 1, 1999 and the MIBG scan was scheduled for the next day, however Ken spiked a fever of 103.8 degrees and landed in the Emergency room at the University of California San Francisco Medical Center. During the hospitalization, the doctors decided that the surgery could not wait as the symptom of fevers most likely were from the tumors and Ken's blood pressure issues needed to be stabilized by removing the primary tumor. Again, to Ken's good fortune the doctor that would perform this surgery was an experienced specialist in Endoctrine Oncological Surgery and Liver Surgery. His experience included an extensive career at the National Institute of Health in Maryland prior to his transfer to the University of California San Francisco Medical Center. The surgery involved removing the left adrenal gland, the primary orange size tumor above the kidney and three cystic tumors from the liver the largest was the size of an orange as well. Prior to surgery, Ken asked the surgeon if he could take a sample of bone marrow so that it would save him from having to go through another procedure. The sample was successfully removed as the bone marrow sample was a prerequisite for consideration of the I-131 MIBG treatment. Ken ran into complications after surgery with secondary illnesses that included a rare pneumonia and a bacterial infection that resulted in time spent in the Intensive Care Unit. Both illnesses were treated with antibiotics and he eventually was discharged from the hospital on December 21, 1999. A Preliminary MIBG scan confirmed that Ken's tumors had the proper uptake of iodine which allowed him to be a candidate for the experimental treatment. The first I-131 MIBG treatment was delayed due to the type of medication that had to be taken for the rare pneumonia, the medications interfered with the stem cell production. By the middle of January he began with a four day regimen of Neupogen shots for the Stem Cell Harvest. The stem cells must be frozen prior to the MIBG treatment should the results from immune system blood tests be dangerously low the stem cells need to be on reserve to help your body fight infection and would be thawed and administered by I.V. if required. The description of the I-131 MIBG treatment is a method of treating metastatic Pheochromocytoma with a radioactive compound called I-131-metaiodobenzylguanidine (I-131 MIBG) which is taken up by the Pheochromocytoma (and related tumor) cells. This compound has been known to deliver the radioactive iodine to the cancer cells selectively and result in their destruction. The treatment requires that the patient undergo a preliminary MIBG scan with a low dose I131-MIBG or I123-MIBG, Pretreatment Evaluation and collection of Stem Cells prior to the onset of determining if the patient is a candidate for the experimental treatment On January 21, 2000 Ken received the first I-131 MIBG Treatment. The dose of radioactive isotope used was 871 Millicuries in the form of MIBG. The liquid substance is administered by I.V. over a two hour period under doctors supervision. The patient wears a urine catheter for 72 hours that flows into a continuously flushing toilet. The patient also receives continuous Saline Solution and is encouraged to drink a lot of water as the majority of the radiation is discharged in bodily waste over the first three days of the treatment. A non-medical description is that the radioactive isotope is absorbed by the tumors and as the tumors die off the dead cells slough away leading in the destruction of the tumor. Most patients are hospitalized for 3-7 days, however Ken stayed in the hospital for twelve days. There are certain radiation safety criteria that need to be met, in Ken's case he was discharged with a radiation level of 11.5 the usual discharge occurs at a level 2. The most difficult part of the treatment for Ken was being confined in a lead lined room with very little contact with people. Due to the high level of radiation, the assigned nurse would spend a maximum of fifteen minutes per eight hour shift in his room. Fortunately, he did not experience vomiting but did have nausea and lack of appetite. When he was discharged we had to take precautions at home regarding the distances that we kept from each other until the radiation levels met the criteria provided by the radiation safety office. Once discharged blood draws were required twice weekly to keep an eye on Neutrophil counts, Hemoglobin and Hemotocrit. Subsequently, Ken spent time in our local hospital for secondary infection resulting in high fever and drops in his blood counts this required I.V. antibiotics, blood transfusions and platelet transfusions. During this time, he was given an empirical treatment for a yeast infection and treated for six months with Fluconozol orally three times daily. The blood levels did not drop low enough to receive the Stem Cells although blood draws were done daily to keep a close watch on his condition. Subsequently, he was discharged and went to follow up appointments on an outpatient basis. On Good Friday April 2000, Ken had a standard follow up visit with his doctor and we arrived a little early and decided to sit in our car prior to checking in for the appointment. I looked over at Ken and his color was drained from his face we decided to use the wheel chair as he did not look well. He got out of the car and sat in the wheel chair and went into uncontrollable shakes. I tried to get the thermometer in his mouth, but he was shaking so bad I couldn't, I wanted to wheel him to the Emergency room but he insisted on going to his appointment. When he arrived the doctor could not examine him as he still was shaking uncontrollably and requested that the nurses get an I.V. line in him immediately. By the time he was taken to the Emergency room his temperature spiked to 105 degrees. Strong antibiotics started to be administered to help bring down the fever and a C.T. Scan of his abdomen followed as he was complaining of pain in this area. Within a couple of hours, his fever came down and the doctors admitted him to the hospital. It was determined that an abscess had formed in the liver and a rare bacteria that is typically found in the intestine appeared as an abnormality on a blood test. A Gastroenterologist decided that a fistula had formed from the abscess to the small intestine and was draining into the abscess. A drain was installed in the liver to remove the fluid, however possible surgery was a consideration. When the drain was installed a sample of fluid showed "live tumor cells" and a complicated surgery was projected to happen to attempt to resolve the problem. Due to the complexity of the location of the abscess and possible intestine involvement he was referred back to the University of California San Francisco for further observation from the original surgeon. Something that we learned through information from the American Cancer Society is that it is important to be aware that the chance of infection at or near the wound after surgery in a cancer patient is very common. The surgeon elected to install larger drains in the liver to drain as much of the fluid from the abscess as possible. A tentative schedule for another MIBG treatment was booked for May, however this complication would cause a delay. Thankfully, the drain in the liver was removed in late May and an unexplainable healing of this area occurred without surgical intervention. The second I-131 MIBG treatment was rescheduled for June 9, 2000. The amount of radioactive isotope administered was 854 Millicuries of I-131 in the form of MIBG, he would remain in the hospital for seven days. Fortunately, the second treatment was similar to the first and no vomiting or complications occurred during the treatment at UCSF. The level of radiation was at 7 upon discharge as opposed to the common 2 level, however again we met the necessary standards provided by the radiation safety specialist. In home nursing handled blood draws twice weekly to monitor blood levels and signs of possible infection. Again a fever occurred and he was taken to the Emergency room and admitted into our local hospital. He would receive antibiotics to treat infections and future blood results would require multiple platelet and blood transfusions. We watched fireworks on July 4, 2000 from his hospital room and wondered when our lives would return to normal as every holiday for about a year had been spent hospitalized or in isolation due to immune deficiencies. Approximately three weeks were spent in the hospital and his immune system stayed strong enough not to require the Stem Cell Infusion. My husband had set a goal for himself to return to work on July 31, 2000 . I was concerned that he was pushing himself to hard and maybe he should wait to confirm that he was strong enough to meet this goal. He insisted and returned to work full time on July 31, 2000, his day would include a forty five minute commute each way to work and a full eight hours on the job. In the beginning, four days a week were spent driving twenty minutes each way to the hospital for follow up visits. He would come home and have enough energy to have dinner and go to bed. As the days and weeks progressed his stamina improved and his appearance looked better. For the first time in long time life seemed pretty normal. When he had his Endocrinology and Oncology appointment in August 2000 he was told by both doctors in San Francisco that he was in full Bio-Chemical Remission. To our understanding, he is one of three people that have successfully gone into remission with the experimental trial at UCSF. The news was remarkable and we both felt so blessed to have experienced this journey to improved health. We have the belief that miracles do happen. My husband's mission statement was that he did not believe that God wants anyone to give up and to always keep the faith. There were times when there did not seem to be light at the end of the tunnel and everything felt like it was spinning out of control. We were there together to ride out those hard times and to support each other with a smile, a laugh, and any small glimmer of hope. When things seemed out of control this approach got us through the twists and turns along the way. I always admired certain qualities in my husband, but this experience showed me how much courage a person can have when faced with a big obstacle. He has been an inspiration to many people that surround him and has shared his testimony to bring hope to the lives of others.  Finally, we both wanted this information to be available to the public as there are doctors and hospitals in the United States that are not familiar with this high dose radiation treatment. If one persons life can be improved by reading this story that will make a difference. If you are interested in finding out more about this treatment refer to the Address Book on this Web-site for contact information. Should you have questions or comments concerning my husband's experience please feel free to E-mail a message and we will be happy to respond.  We would love to know that you stopped by and visited our site, so please sign our guestbook if possible. |
