{"id":29745,"date":"2023-08-15T11:12:14","date_gmt":"2023-08-15T15:12:14","guid":{"rendered":"https:\/\/www.cancerresearch.org\/?post_type=cri_stories&#038;p=29745"},"modified":"2025-06-05T13:25:45","modified_gmt":"2025-06-05T17:25:45","slug":"karen-koehler","status":"publish","type":"cri_stories","link":"https:\/\/www.cancerresearch.org\/es\/stories\/immunoadvocates\/karen-koehler","title":{"rendered":"Karen Koehler"},"content":{"rendered":"\n<h1 class=\"wp-block-heading\">Karen&#8217;s Story<\/h1>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Getting Through Leukemia Together: Karen&#039;s Immunotherapy Story\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/xHpCpyxlI7c?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p>When Karen Koehler was first diagnosed with leukemia, she was told not to worry too much&nbsp;and that by the time she needed treatment, there would be several new, excellent therapy options. But things didn\u2019t turn out that way\u2014within three years of her initial diagnosis, she learned the leukemia had shifted into high gear&nbsp;and was resistant to chemotherapy. Karen decided to pursue an immunotherapy clinical trial of chimeric antigen receptor therapy, or CAR T cell therapy, and today, she is cancer-free.&nbsp;<\/p>\n\n\n\n<p>UPDATE, September 2018: Karen Koehler remains cancer-free and spoke at the CRI Immunotherapy Patient Summit in New York City on September 15, 2018.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Patient Perspective: Karen Koehler, Leukemia Survivor - NYC Immunotherapy Patient Summit 2018\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/sFatS-6L9mU?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\">Questions and Answers <\/h2>\n\n\n\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\" style=\"margin-top:var(--wp--preset--spacing--42)\">\n<section  class=\"accordion-block align wp-block-acf-accordion\" id=\"accordion-block_0d5bf4dbbbaaaa755b3dc6e7798a6355\">\n  <div class=\"acf-innerblocks-container\">\n\n<header class=\"block-accordion-panel-title\">\n  <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\">How and when did you first learn you had cancer?<\/h3>\n\n<\/div><\/header>\n\n\n<div class=\"block-accordion-panel-copy\">\n    <div class=\"block-accordion-panel-inner\">\n      <div class=\"acf-innerblocks-container\">\n\n<p>In September 2011, I was diagnosed with chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL), but they say they\u2019re kind of the same. I was diagnosed via blood work, and was told by my doctor, \u201cIf you\u2019re going to get a cancer, this is a great one to get. You don\u2019t have to worry about anything.\u201d He said you\u2019ll probably go 20 years before we even have to do anything. I just went in every three months for monitoring with blood work.<\/p>\n\n\n\n<p>But in July 2013, at the urging of my friend, I got a second opinion, and had a bone marrow biopsy. The results showed that I had these mutations that I didn\u2019t know existed:&nbsp;one was a 17P deletion, the second was CD19, and there were quite a few others. These mutations meant the cancer was more aggressive and harder to treat. But still, nothing really changed.&nbsp;I felt fine, and kept going for blood work.<\/p>\n\n<\/div>    <\/div>\n<\/div>\n<\/div><\/section>\n\n\n<section  class=\"accordion-block align wp-block-acf-accordion\" id=\"accordion-block_0d5bf4dbbbaaaa755b3dc6e7798a6355\">\n  <div class=\"acf-innerblocks-container\">\n\n<header class=\"block-accordion-panel-title\">\n  <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\">How did you learn about immunotherapy and why did you decide to do it?<\/h3>\n\n<\/div><\/header>\n\n\n<div class=\"block-accordion-panel-copy\">\n    <div class=\"block-accordion-panel-inner\">\n      <div class=\"acf-innerblocks-container\">\n\n<p>We knew that chemo wasn\u2019t going to help me much, and that the prognosis was not great at all. My husband, Dave, and I had heard about CAR T cell therapy from my last doctor; he was so excited about it. He just thought that was going to be the best thing.<\/p>\n\n\n\n<p>We sat down with the doctor and I said to her, \u201cCan you get me into the CAR T cell trials?\u201d And first she said, \u201cWow; they\u2019re really only taking people that have had major treatment.\u201d But then she said, \u201cBut you\u2019re right. Why make yourself so sick with chemo? Let\u2019s get you into a trial.\u201d<\/p>\n\n\n\n<p>She called over to Sloan Kettering, and we got an appointment immediately with Dr. Park.<\/p>\n\n<\/div>    <\/div>\n<\/div>\n<\/div><\/section>\n\n\n<section  class=\"accordion-block align wp-block-acf-accordion\" id=\"accordion-block_0d5bf4dbbbaaaa755b3dc6e7798a6355\">\n  <div class=\"acf-innerblocks-container\">\n\n<header class=\"block-accordion-panel-title\">\n  <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\">What was treatment like? Did you have any side effects?<\/h3>\n\n<\/div><\/header>\n\n\n<div class=\"block-accordion-panel-copy\">\n    <div class=\"block-accordion-panel-inner\">\n      <div class=\"acf-innerblocks-container\">\n\n<p>It was explained that with CAR T cell therapy, they would take my white cells and reengineer them, so my own immune system fights the cancer. And when your immune cells kill off the cancer, you get very, very sick.<br><br>My doctor started me on Rituxan and I had a horrific response to it. No blood pressure, my heart was going down to nothing. So after that, they had to hospitalize me to give Rituxan on a very slow drip. But my doctor felt this tough reaction was actually a good thing\u2014it meant I could qualify for the CAR T cell trial.<\/p>\n\n\n\n<p>In October, they harvested my white cells to prepare them, and in February 2015 I was admitted to the hospital. They hit me with two days of chemo, which was nothing. I didn\u2019t feel that at all. And then they gave me one bag of the CAR T cells. The reaction your body has to the treatment is called a cytokine storm. For me, the storm hit within an hour after finishing my bag of cells.<\/p>\n\n<\/div>    <\/div>\n<\/div>\n<\/div><\/section>\n\n\n<section  class=\"accordion-block align wp-block-acf-accordion\" id=\"accordion-block_0d5bf4dbbbaaaa755b3dc6e7798a6355\">\n  <div class=\"acf-innerblocks-container\">\n\n<header class=\"block-accordion-panel-title\">\n  <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\">How did immunotherapy compare to other treatments you may have received, if any?<\/h3>\n\n<\/div><\/header>\n\n\n<div class=\"block-accordion-panel-copy\">\n    <div class=\"block-accordion-panel-inner\">\n      <div class=\"acf-innerblocks-container\">\n\n<p>It was brutal, but I was prepared. I was excited because I knew the sicker I got that meant the better it worked. I ended up in ICU that night. I was there for eight days, in a coma for most of those eight days.<\/p>\n\n\n\n<p>Recovery was really lying in bed for a month. I had to go to physical therapy. I think the scariest part of the whole thing was the mental aspect. It really affects you. They had a neurologist evaluate me almost every day. When I could talk again they kept testing me, asking things like, \u201cName five words that begin with the letter T.\u201d I could only do two. But they were very calm and said, \u201cIt\u2019s okay, it will come back.\u201d<\/p>\n\n\n\n<p>I was released on March 3rd. They did a bone marrow biopsy that day. I went back to Dr. Park a week later and he said, \u201cThat first bone marrow biopsy usually shows some cancer, so don\u2019t be upset. Your body is still actually killing it off.\u201d But the bone marrow report came back zero. I was thrilled.<\/p>\n\n<\/div>    <\/div>\n<\/div>\n<\/div><\/section>\n\n\n<section  class=\"accordion-block align wp-block-acf-accordion\" id=\"accordion-block_0d5bf4dbbbaaaa755b3dc6e7798a6355\">\n  <div class=\"acf-innerblocks-container\">\n\n<header class=\"block-accordion-panel-title\">\n  <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\">Are there things that surprise you about the cancer experience?<\/h3>\n\n<\/div><\/header>\n\n\n<div class=\"block-accordion-panel-copy\">\n    <div class=\"block-accordion-panel-inner\">\n      <div class=\"acf-innerblocks-container\">\n\n<p>My struggle now is that I was very active before cancer, with teaching and volunteering and exercise. I miss the teaching. My hobbies\u2014I always walked, golfed, snowshoed, anything outdoors. That has not stopped. But my body is not the way it was before cancer. I get sick more easily for one thing, and I get more tired.<\/p>\n\n\n\n<p>I\u2019m still learning how far to push myself. I have to say to myself, \u201cOkay, wait a minute, I just golfed 18 holes, and now friends want to go out to dinner. Should I do both?\u201d I just got over a cold and I wanted to go for a hike and my husband said, \u201cShould you be doing that?\u201d I tend to push myself when I shouldn\u2019t.<\/p>\n\n<\/div>    <\/div>\n<\/div>\n<\/div><\/section>\n\n\n<section  class=\"accordion-block align wp-block-acf-accordion\" id=\"accordion-block_0d5bf4dbbbaaaa755b3dc6e7798a6355\">\n  <div class=\"acf-innerblocks-container\">\n\n<header class=\"block-accordion-panel-title\">\n  <div class=\"acf-innerblocks-container\">\n\n<h3 class=\"wp-block-heading\">What would you want another patient to know about immunotherapy or about participating in a clinical trial?<\/h3>\n\n<\/div><\/header>\n\n\n<div class=\"block-accordion-panel-copy\">\n    <div class=\"block-accordion-panel-inner\">\n      <div class=\"acf-innerblocks-container\">\n\n<p>The other component which is unique is I did not go through a bone marrow transplant after treatment.\u00a0I think almost 100% of people do. I had a donor set up. We had everything ready to go and Dave and I talked to the doctor and said, \u201cWe\u2019re willing to gamble if you are; why can\u2019t this be the cure? Why can\u2019t just the CAR T cell therapy work?\u201d We all decided that we would give it a shot and see how this works without the bone marrow transplant. So far, it\u2019s worked. I\u2019m still cancer-free over a year later.<\/p>\n\n<\/div>    <\/div>\n<\/div>\n<\/div><\/section><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Karen&#8217;s Story When Karen Koehler was first diagnosed with leukemia, she was told not to worry too much&nbsp;and that by the time she needed treatment, there would be several new, excellent therapy [&hellip;]<\/p>\n","protected":false},"featured_media":29746,"template":"single-cri_stories_immunoadvocate","cri_story_type":[387],"resource_cancer_types":[841],"resource_patient_age":[],"resource_cancer_stage":[],"resource_treatment_type":[],"resource_treatment_status":[],"class_list":["post-29745","cri_stories","type-cri_stories","status-publish","has-post-thumbnail","hentry","cri_story_type-immunoadvocates","resource_cancer_types-leukemia"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Karen Koehler | ImmunoAdvocate | Cancer 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