July 27, 2004
Diagnosed with Mesothelioma
On December 21st of 2001 we learned that my dad had Mesothelioma. My mother and I were stunned when Dr. Sean Grondin at Evanston Hospital informed us that my father would be dead within 3-6 months. My father was 68 years old and had never been sick. He was active and healthy. He played tennis a few times a week and took long walks. For a few months prior to the diagnosis he had been to the doctor complaining about shortness of breath. He never had any pain. Although my mom kept telling the doctors that his heart appeared to be beating very hard, they did not see what she saw. She would watch it through his shirt and it was very irregular.
In November they drained 2 liters of fluid from his lung. This was after a chest x-ray showed fluid. About 2 weeks later they drained 2 more liters. They thought he might have pneumonia or pleurisy or possibly tuberculosis. They performed a biopsy when the fluid reappeared. On Dec. 21st we all learned a new word...Mesothelioma.
Very few of our non-medical friends ever heard of this disease. Fortunately, doctor friends of my sister-in-law recommended a brilliant surgeon, Dr. Harvey Pass in Detroit, MI. In January 2002 we drove off to Detroit for the radical surgery. My dad had the extrapleural pneumenectomy--his right lung, right pleura, 50% of his pericardium and 80% of his diaphragm were removed. He did not have a single complication resulting from his surgery. He was walking around his room 2 days later. WIthin weeks he was off all pain killers. He was driving within 30 days. We will forever be grateful for the surgical skills of Dr. Pass.
We decided to remain with Dr. Pass for a clinical trial of a copper chelate. The theory was to starve the tumor of red blood. My dad went to his doctor for weekly blood tests and the blood was fed-exed to Dr. Pass. They would increase or decrease the meds depending on the levels. We went to Detroit once a month to be seen by Dr. Pass and every 3 months he got a CT. He was becoming almost anemic as they cut off the tumors food supply. He was fatigued, but still able to live life. It was not near the levels of fatigue of typical chemo drugs--which we were to discover later. He golfed a few times that summer. He enjoyed happy times with family and friends. He and my mom celebrated their 40th wedding anniversary.
By August the tumor returned. It was poking out at the site of the incision from the biopsy. It was purple like an eggplant and very sore. By the end of the month he was taking pain killers to dull the pain. Dr. Pass made arrangements fo us to go to the University of Chicago-Dr. Hedy Kindler-for chemotherapy.
BY the end of Sept. 2002 he started on a chemo trial. He was on cisplatin, gemzar and the trial drug bevacizumab. We went every week for 3 weeks and the fourth week he was off. He tolerated the chemo very well. He was able to force himself to eat. He claimed he had no appetite. Thanks to my mom's wonderful cooking and tireless devotion, he never lost any weight to speak of. He was tired--very tired, but he did not have constipation or nausea that other patients reported.
By the end of the first cycle of treatment (3 week cycle) he was off the pain meds. Really after the first treatment we saw the tumor shrinking and not so purple.
We were off to a good start.
Posted by Lisa W. on July 27, 2004 11:18 AM
I have worked with Dr. grondin for a few years. He is a compassionate and thoughtful surgeon. He is a leader in the treatment of mesothelioma in Canada and is one of a few surgeons who supports an aggressive management approach to this disease. I do not believe that he would have said what you claim. I suggests that you recheck your correspondance. Nurse - TBCC
Posted by: Anonymous at January 6, 2005 02:29 PM
Hello friend,I was just reading your july post and wanted to write you. It seems so lucky that your dad had a doctor who would do the surgery, who knew about it.My uncle was dx'd with lung cancer, not in the lungs but in the plura. This was in around 1988. They also gave him 3-6 months to live. He was 33. He found a doctor who would treat him with an aggressive type of chemotherapy, like they use in prostate cancer, which seemed to be helping in cases like his. The M word was never used, but we now know it was Mesothelioma.My uncle's son was 1 year old when dx'd and he vowed to do everything he could to live one day longer, as each day was another chance his son would remember him. After 4 years of treatments, remissions, actual 'Healings', he succumbed to the disease in 1992.It was only after his death, years after, that Meso hit the law firm ads. The first time I heard of it I knew that was what he'd had. He had worked in a GE plant wrapping the hot water tanks with asbestos blankets for about 2 years. So asbestos to Meso...right?He was sooooooo young, 37, to die. My favorite uncle. Now it's hard to believe I'm about to be 42, older than him when he died. Strange.I'm hoping to read more of your Dad's story...Hugs, Judy
Posted by: Judy in AZ at January 11, 2005 05:48 AM