Mesothelioma Survivor: Larry Kinseth
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| Larry Kinseth |
As Larry Kinseth, his wife Shari, and their daughter repacked their bags to leave Los Angeles for home in Iowa, Larry shared some insight on his treatment for pleural mesothelioma, excitement on seeing his grandchildren, and plans for many upcoming golf games.
Larry was 68 years old when he was diagnosed with mesothelioma, epithelial type. Seeking the best treatment, Larry met with a local oncologist, later flew to the Mayo Clinic in Minnesota, but eventually landed in Los Angeles to undergo Dr. Robert Cameron’s treatment protocol. Though his local physicians discouraged him from undergoing the pleurectomy with decortication, Larry thought he had to do whatever he could, and if that meant traveling a great distance, then he would do it.
Chemotherapy in the beginning
Several weeks elapsed between Larry’s diagnosis and surgery. But in the meantime, his oncologist cared for him well and treated him with two cycles of chemotherapy (Alimta only) followed by a PET scan to monitor the treatment. Usually, six cycles of chemotherapy account for one round of treatment; Larry had only two cycles, which is not uncommon. Often chemotherapy for mesothelioma consists of Alimta and Cisplatin and spans 21 days. Though Larry only received Alimta, his treatment timeline was the same as if he received both Alimta and Cisplatin. The chemo schedule would be as follows:
On Day 1, the chemotherapies are given intravenously. This process lasts about 6 hours total while doctors ensure the patient is properly hydrated. Then, Alimta is pumped through the body intravenously for 10 minutes. A short break for 20 minutes follows when no chemo is given. After that, Cisplatin is injected intravenously for about 2 ½ hours. Once the chemo treatment is over, the doctors re-hydrate if needed.
From Days 2 – 21 there is no treatment given. During this time, it’s best to eat well while balancing a certain amount of rest and activity. On Day 22, the next cycle begins.
So Larry’s two cycles of Alimta (as a single agent) spanned 42 days. During this time, friends and family poured through information on mesothelioma to help Larry make better treatment decisions. What they found was a possibility of surgery and once Larry decided he wanted to pursue it, he lost no time in making the flight
arrangements.
Valentine’s Day
In early February 2008, Larry, Shari, and their children (with scans and reports in tow), flew to Los Angeles for a consultation with Dr. Cameron. Turned out, the trip was worthwhile. Larry was a good surgical candidate to have his pleural lining removed along with all visible tumor. Surgery was schedule for the following week, February 14, 2008. Perhaps this wasn’t how Larry envisioned spending Valentine’s Day, but for the first few days recovering in the hospital, he periodically forgot he’d even had the surgery. His step-daughter joked that Larry asked, “When are the doctors going to do the surgery? Let’s get this done!”
Surgery
Within 6 ½ hours, Dr. Cameron and his team removed the pleural lining, 80% of the diaphragm, and all visible tumor. A few days later, Larry’s body caught up with him and he couldn’t get the pain killers down quickly enough. On the second day in the hospital, Larry could stand and eventually began to walk about the room, then down the hallways, and eventually he walked multiple times each day. His body was healing slowly and steadily; drainage tubes were removed as the wounds healed. On his eighth day in the hospital, one of the drainage tubes actually fell out. Larry was so concerned that he’d done something wrong, fearing “I might have killed myself.”
When the doctor arrived, he assured Larry no damage was done and that was the tube he was planning to remove anyway. Jokingly, the doctor asked Larry if he wouldn’t mind letting the doctors remove the last tubes! In good humor, Larry obliged and was released from the hospital on the ninth day, February 23, 2008.
Home Away from Home
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| Larry after surgery |
The Kinseths had the opportunity to stay in the apartment that John and TC McNamara dedicated to out-of-state patients seeking mesothelioma treatment at UCLA. Larry and his family loved getting to know the quaint little area outside Universal Studios and left “no stone uncovered” using their GPS system as they became familiar with the Los Angeles neighborhoods. Larry said the GPS was great and the only way he could get around (locals agree!). Anyone unfamiliar with Los Angeles could be daunted by the sprawl, but the Kinseths eventually got the hang of it.
Radiation
After healing from surgery, Larry prepared for his first radiation treatment on March 26, 2008. Every week day for about five weeks, Larry made his way to UCLA for his session that lasted about 10-15 minutes. Here’s how Larry felt at the time:
Week 1: no difference
Week 2: slight appetite loss because food didn’t taste quite right and tightness in his throat
Week 3: with no pain pills left from surgery, Larry rubbed a salve twice a day on his incision and radiation site which brought some pain relief
Weeks 4 -5: the biggest problem was nausea which was quite uncomfortable
Larry’s symptoms are typical of most patients who undergo radiation. A good idea is to make sure extra pain medicine is available if needed. Additionally, patients should always speak to their doctors about side effects. Some medicines that combat nausea and other symptoms might be available. Larry finished radiation at the end of April 2008.
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| Larry with his family |
MESOMARK
The MESOMARK blood test is currently FDA approved to monitor peptide levels for mesothelioma patients (epithelial type). Not all patients exhibit the specific peptides this test monitors, in fact less than half do. However, for those patients who do have the specific peptides the MESOMARK test monitors, the test is a useful tool to monitor mesothelioma along with PET scans and CT scans.
The MESOMARK can be very helpful when a PET/CT scan shows some change but a physician may be unsure if it is simply inflammation perhaps due to a cold or mesothelioma progressing. In these instances, the MESOMARK test is designed to give a specific number to determine if mesothelioma is active or not. Additionally, if a patient is undergoing chemotherapy, the MESOMARK test may be easily given after the second round of treatment to show if the chemotherapy is working.
Before surgery, Dr. Cameron ordered the MESOMARK test for Larry. His results came back at 2.9 which is elevated and indicates that Larry indeed has mesothelioma. After surgery and radiation, another MESOMARK test showed that his levels were 1.4, which suggests that the treatment was successful. Levels 1.5 and below indicate that mesothelioma is not active. Larry will have regular MESOMARK tests to monitor any disease progression.
Get more information on the MESOMARK test
Larry’s Advice
Larry has nothing but praise for UCLA and Dr. Cameron’s team. He says, “Dr. Cameron did an excellent job communicating with me all along the way.” Larry felt that the operation was right for him and feels that Dr. Cameron took very good care of him.
Though there were times that Larry felt down during and after his treatment, he said that he tries not to lose faith, “there will always be obstacles, but know you have to get to the end.” So that’s what Larry’s doing—overcoming obstacles like lingering pain from surgery to get to see his 11 grandchildren, 2 great-grandchildren, celebrate his 30th wedding anniversary with Shari this year, and of course, long days of golf ahead.
November 25, 2008