{"id":162860,"date":"2020-07-29T07:01:12","date_gmt":"2020-07-29T11:01:12","guid":{"rendered":"https:\/\/today.uconn.edu\/?p=162860"},"modified":"2021-04-13T15:31:07","modified_gmt":"2021-04-13T19:31:07","slug":"longshot-lenny-finds-hope-uconn-health-didnt-want-die","status":"publish","type":"post","link":"https:\/\/today.uconn.edu\/2020\/07\/longshot-lenny-finds-hope-uconn-health-didnt-want-die\/","title":{"rendered":"‘Longshot Lenny’ Finds Hope at UConn Health: ‘I Didn’t Want to Die’"},"content":{"rendered":"

He was told he had less than six months to live, and he should get his affairs in order. Tumors had reached his brain and control seemed unlikely. His daughter moved up her wedding date.<\/p>\n

But Lenny Lewis wasn\u2019t ready to give up.<\/p>\n

Not only did he live to see his daughter get married, he danced with her at the wedding, and now, almost two years after he walked her down the aisle, indications are he\u2019s cancer-free.<\/p>\n

\u201cI didn\u2019t want to die,\u201d Lewis says. \u201cI just decided to mentally fight it. That\u2019s what kept me going. That, and I just didn\u2019t want to be without my family.\u201d<\/p>\n

Supporting this patient\u2019s will to live was a small army of UConn Health providers in neurosurgery, oncology, radiation oncology, pulmonary medicine, and radiology.<\/p>\n

‘Really Bad Headaches’\u00a0<\/strong><\/p>\n

It was late summer 2017 when Lewis, a Navy veteran, found himself taking aspirin for headaches that were becoming more frequent and severe over a period of about two months. He\u2019d been doing work outdoors and chalked it up to sun exposure. Then one day he blacked out and ended up at the UConn John Dempsey Hospital, where he learned he had a complex tangle of blood vessels called a brain arteriovenous malformation, or AVM.<\/p>\n

\"Lenny
Lenny Lewis passes the time in the infusion room in UConn Health\u2019s Carole and Ray Neag Comprehensive Cancer Center, where for two years he would come in every three weeks for a dose of pembrolizumab. (Photo provided by Patricia Desjardins)<\/figcaption><\/figure>\n

The AVM itself was inoperable. But the multidisciplinary expertise available at UConn Health made radiosurgery a treatment option.<\/p>\n

The headaches still persisted and repeat imaging a few months later revealed this tangle of blood vessels was concealing a brain tumor.<\/p>\n

When Dr. Ketan Bulsara<\/a>, chief of UConn Health\u2019s Division of Neurosurgery<\/a>, explained the situation, Lewis didn\u2019t need much convincing.<\/p>\n

\u201cThe first day he and I talked, he said, \u2018I\u2019ve got to operate on this to give you the best chance of recovery,\u2019\u201d Lewis says. \u201cHe thought I was going to maybe argue with him, but I said, \u2018You gotta do what you gotta do.\u2019\u201d<\/p>\n

When a tumor is embedded in an inoperable mass of blood vessels, removing it becomes a much higher-risk operation.<\/p>\n

\u201cCare had to be taken not to violate any of these blood vessels while resecting the tumor, because doing so would lead to severe neurological disabilities,\u201d Bulsara says.<\/p>\n

The operation went as planned and the tumor was resected successfully. But Lewis\u2019s problems were far from over. There were other, smaller lesions on his brain.<\/p>\n

\u201cLenny required stereotactic radiosurgery, or pinpointed high dose radiation therapy, to ablate several small spots in his brain,\u201d says Dr. Charles Rutter<\/a> from UConn Health\u2019s Division of Radiation Oncology<\/a>. \u201cAs with everything else, he was willing to do whatever he had to do to beat this.\u201d<\/p>\n

Beyond the Brain<\/strong><\/p>\n

With the first brain tumor removed and the radiation attacking the smaller brain lesions, the focus shifted. Imaging tests showed troubling spots on Lewis\u2019s chest, liver, and abdomen.<\/p>\n

And a large mass in his left lung.<\/p>\n

\u201cAnd then they started the chemo treatment,\u201d Lewis says. \u201cThey said it traveled from my lungs up to my brain. That’s why I was getting the headaches I was getting. I mean, they were horrible.\u201d<\/p>\n

The prognosis was far from good. By March 2018, it appeared that neither the systemic tumors nor the brain tumors were responding. His condition continued to worsen and hope appeared dismal.<\/p>\n

\u201cThere were two brain tumors on different sides of the brain that were contributing to his rapid decline,\u201d Bulsara says. \u201cThey were causing a lot of pressure on his brain and limiting not only his survival, but also ability to get further treatments.\u201d<\/p>\n

Bulsara went back in, this time performing bilateral craniotomies to resect the lesions.<\/p>\n

\u201cAs weakened as he had become, Lenny wanted to keep fighting,\u201d Bulsara says. \u201cHe knew that our multidisciplinary UConn Health team and family was going to do all we could to continue to fight this with him. We needed more time to find a regimen that would treat his systemic tumors, but the brain tumors threatened to take away any time.\u201d<\/p>\n

\"Dr.
Dr. Charles Rutter is a radiation oncologist at UConn Health. (Photo by Jeanine Gelineau)<\/figcaption><\/figure>\n

It was around this time Patricia Desjardins, Lewis\u2019s daughter, remembers deciding to move up her wedding date by nearly a year.<\/p>\n

\u201cDad and I would spend sometimes five days a week at UConn,\u201d Desjardins says.<\/p>\n

At this point, Lewis also was under the expert care of Dr. Susan Tannenbaum<\/a>, chief of UConn Health\u2019s Division of Hematology\/Oncology, and Dr. Omar Ibrahim<\/a>, director of interventional pulmonology, for his other systemic tumors.\u00a0 Still, the plan to find a chemotherapy regimen to treat the lung metastasis wasn\u2019t working.<\/p>\n

\u201cThe side effects were horrible,\u201d Lewis says.<\/p>\n

He recalls being told he doesn\u2019t have very long.<\/p>\n

\u201cThat kind of blew my mind,\u201d Lewis says. \u201cAnd so I just said I’ll keep up with the treatments, pray, and do whatever you tell me.\u201d<\/p>\n

‘Our Last Option’<\/strong><\/p>\n

The next, and likely last, step was a relatively new therapy: pembrolizumab, a humanized antibody designed to catalyze the patient\u2019s immune system to attack cancer cells. Considered not a chemotherapy but an immunotherapy, it\u2019s not without its own risks, including the potential to also attack healthy organs and tissue.<\/p>\n

Lewis recalls being told, \u201cWe don\u2019t know if it\u2019s going to work, but that\u2019s our last option to fight the cancer.\u201d<\/p>\n

Through UConn Health\u2019s Department of Surgery and Division of Neurosurgery, Bulsara and The Jackson Laboratory for Genomic Medicine<\/a> (JAX) had established a tumor genomics pilot initiative. The tumor in Lewis\u2019s brain was the first Bulsara sent to JAX for extensive sequencing.<\/p>\n

\u201cWhat was encouraging was, through this precision medicine initiative, this was a class of medications identified that would be beneficial for Lenny\u2019s tumor,\u201d Bulsara says.<\/p>\n

It was early 2018 when Lewis started coming to the Carole and Ray Neag Comprehensive Cancer Center every three weeks to be infused with pembrolizumab, also known under the brand Keytruda.<\/p>\n

\u201cThey put a port in my right chest area, near my shoulder, right next to my collarbone,\u201d Lewis says. \u201cThey put a port because they were putting so many needles into my arms. That was really, really painful. I hated it.\u201d<\/p>\n

Turning a Corner<\/strong><\/p>\n

The regimen called for infusions every three weeks, and how long it continues depends on the patient\u2019s response. Generally a patient will stay on pembrolizumab a maximum of two years \u2013 a life sentence to someone who\u2019d been told he might have six months to live.<\/p>\n

Every three weeks, Lewis would come in for the infusion.<\/p>\n

\"Dr.
Dr. Ketan Bulsara is chief of the UConn Health Division of Neurosurgery. (Photo by Jeanine Gelineau)<\/figcaption><\/figure>\n

\u201cAll the nurses and staff were very, very helpful and friendly,\u201d Lewis says. \u201cWhen I was going through that stage, every so often, you know, you just get in a crappy mood and you take it out on whoever’s around you. But they put up with it. That helped a lot, how they were friendly and they would help me in any way I wanted or needed.\u201d<\/p>\n

He was about five months into his infusions when his daughter would get married.<\/p>\n

\u201cThe wedding went by so fast and I was really worried that Dad wouldn’t make it the whole day, or to our father daughter dance,\u201d Desjardins says. \u201cBoy was I wrong!\u201d<\/p>\n

Their song was \u201cHotel California\u201d by the Eagles. She recalls tapping her fingers on his back in time with the drumbeats, and them singing the song to each other, as they did when she was growing up.<\/p>\n

\u201cHe looked so happy he smiled and sang like the old times like cancer wasn’t even the reason he was 115 pounds, bald and scarred on his head from multiple surgeries, and for that moment life seemed normal again,\u201d Desjardins says. \u201cI’m glad we moved it up and honestly it was a perfect day.\u201d<\/p>\n

But it was still unclear how many days would be left. Christmas with Dad was far from a certainty.<\/p>\n

But another five months went by, then then five more, and as he continued the immunotherapy, something remarkable was happening.<\/p>\n

\u201cHis systemic tumors started disappearing and nothing new appeared in the brain,\u201d Bulsara says.<\/p>\n

‘Simply Outstanding Results’<\/strong><\/p>\n

The combined expertise of UConn Health and JAX had led to a therapy that would change the trajectory of Lewis\u2019s treatment.<\/p>\n

\u201cLenny started off with a drug that was expected to work very well,\u201d Rutter says. \u201cHowever, when that failed he moved on to immunotherapy, which revs up his immune response to his cancer. That has led to simply outstanding results in his case.\u201d<\/p>\n

Earlier this year, as the state and country were on the verge of COVID-19 lockdown, Lewis reached the end of his two-year window with pembrolizumab. A late-spring positron emission tomography (PET) scan showed no active disease.<\/p>\n

\"Lenny
Lenny Lewis gives away his daughter, Patricia Desjardins. \u201cI\u2019m forever grateful to the oncology, neurology, pulmonary, radiology, palliative care team, nurses, office staff and anyone else that was a part of my father’s care at UConn,\u201d Desjardins says. (Photo by Stacey Lynn Photography, provided by Patricia Desjardins)<\/figcaption><\/figure>\n

\u201cI got lucky as hell the Keytruda killed the cancer when the medication period ran out and the pandemic started,\u201d Lewis says. \u201cSo I guess God was working on my side.\u201d<\/p>\n

\u201cWhen COVID-19 surfaced in the United States they stopped dad’s treatment and I was worried the cancer was going to return full force and we would lose him during a time that family cannot enter the hospitals to be with loved ones,\u201d Desjardins says. \u201cI have to tell you the only good thing that came out of quarantine was the diagnosis of my father being told he was in remission!\u201d<\/p>\n

Lewis, who lives in Killingworth, turns 59 this fall.<\/p>\n

\u201cWe just can\u2019t say enough about Dr. Bulsara and Dr. Rutter, and all the wonderful doctors and nurses at UConn,\u201d says Faith Meyers, Lewis\u2019s sister. \u201cSeeing what they did for my brother, it\u2019s clear, UConn is the place to go for health care. All my doctors are at UConn now, and I wish I\u2019d done that years ago.\u201d<\/p>\n

Bulsara says the span of specialties involved in this success story demonstrates UConn Health\u2019s continued commitment to being a world-class destination center for care.<\/p>\n

\u201cMultidisciplinary care of patients is optimizing outcomes,\u201d Bulsara says. \u201cAnd the addition of medical neuro-oncologist Kevin Becker<\/a> to the Carole and Ray Neag Comprehensive Cancer Center last fall is yet another example of a programmatic treatment dimension added for patients with brain and spine tumors.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

He was told he had less than six months to live, and he should get his affairs in order. But Lenny Lewis wasn\u2019t ready to give up, and neither was his team of UConn Health providers.<\/p>\n","protected":false},"author":111,"featured_media":162851,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_crdt_document":"","wds_primary_category":0,"wds_primary_series":0,"wds_primary_attribution":0,"footnotes":""},"categories":[2231,2289,179],"tags":[],"magazine-issues":[],"coauthors":[2010],"class_list":["post-162860","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-well-being","category-neurosurgery","category-uconn-health"],"pp_statuses_selecting_workflow":false,"pp_workflow_action":"current","pp_status_selection":"publish","acf":[],"publishpress_future_action":{"enabled":false,"date":"2026-05-05 01:42:49","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"_links":{"self":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/162860","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/users\/111"}],"replies":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/comments?post=162860"}],"version-history":[{"count":8,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/162860\/revisions"}],"predecessor-version":[{"id":164559,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/162860\/revisions\/164559"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media\/162851"}],"wp:attachment":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media?parent=162860"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/categories?post=162860"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/tags?post=162860"},{"taxonomy":"magazine-issue","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/magazine-issues?post=162860"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/coauthors?post=162860"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}