{"id":18465,"date":"2018-09-12T16:31:51","date_gmt":"2018-09-12T22:31:51","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=18465"},"modified":"2021-09-28T08:59:30","modified_gmt":"2021-09-28T14:59:30","slug":"uchealth-providers-join-forces-to-battle-an-elusive-cancer-foe","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/uchealth-providers-join-forces-to-battle-an-elusive-cancer-foe\/","title":{"rendered":"UCHealth providers join forces to battle an elusive cancer foe"},"content":{"rendered":"
<\/div>
\"Photo
Barbara Hope-Gaiti suffered with undiagnosed cutaneous T cell lymphoma for four years before visiting Haverkos and Pacheco at the Multidisciplinary Cutaneous Lymphoma Clinic 18 months ago.<\/figcaption><\/figure>\n

Five years ago, Barbara Hope-Gaiti found herself in a battle with a disease that hides in plain sight.<\/p>\n

Hope-Gaiti, now 71, didn\u2019t worry too much about the red, rough patches of skin when they first appeared. She didn\u2019t like their looks and they irritated her skin, but they weren\u2019t painful. But as time went on, the mysterious condition claimed more bodily real estate, eventually covering swaths of her torso, breasts, stomach, thighs and back with small bumps.<\/p>\n

\u201cYou could not see the skin,\u201d Hope-Gaiti said.<\/p>\n

She visited dermatologists in Boulder and in her native New York City, going through upwards of 40 skin biopsies and blood tests without getting an answer for the ailment.<\/p>\n

Nonetheless, the condition didn\u2019t stop Hope from living a full life. It didn\u2019t sap her energy. She and husband Donald continued their work with White Knight Productions<\/a>, a company they formed 13 years ago to serve not-for-profit organizations. Hope-Gaiti also had others to worry about. Her younger brother was battling stage 4 glioblastoma, an aggressive brain cancer that ultimately took his life. During the same period, her older brother would also fall ill and quickly pass away.<\/p>\n

\"A
Barbara Hope-Gaiti suffered with undiagnosed cutaneous T cell lymphoma for four years before visiting Haverkos and Pacheco at the Multidisciplinary Cutaneous Lymphoma Clinic 18 months ago.<\/figcaption><\/figure>\n

The emotional ordeal led Hope-Gaiti to suspect that her skin problems were stress-related. But they persisted after her brothers died. She finally determined she had to find an answer for it.<\/p>\n

\u201cI got to the point that I decided I have to take care of me now,\u201d Hope-Gaiti said.<\/p>\n

Getting below the surface<\/strong><\/h3>\n

Hope-Gaiti\u2019s search led her early in 2017 to the University of Colorado Cancer Center<\/a>, where she finally found her answer: a rare cancer called cutaneous T cell lymphoma (CTCL). The diagnosis resulted from collaboration between oncologist Dr. Bradley Haverkos<\/a>, and dermatologist Dr. Theresa Pacheco<\/a>, and their care team.<\/p>\n

Just a month before Hope-Gaiti\u2019s arrival, Haverkos and Pacheco had launched the Multidisciplinary Cutaneous Lymphoma Clinic, the only one of its kind in the Rocky Mountain region, joining forces with other providers to assess, diagnose and develop coordinated plans of care for patients with a disease that often baffles even highly skilled skin disease and cancer specialists.<\/p>\n

Cutaneous lymphoma is a type of non-Hodgkin\u2019s lymphoma<\/a>: It attacks the white blood cells \u2013 T, B and NK, or natural killer, cells \u2013 that are the foot soldiers of the body\u2019s immune system. Its distinguishing feature is that the assault arises in and on the skin. Roughly three-quarters of the cases are CTCLs, which produce red skin, scaling, tissue thickness and often intense itching. It is therefore easily mistaken for eczema or dermatitis by dermatologists who are unfamiliar with its appearance, Pacheco said.<\/p>\n

Easily missed<\/strong><\/p>\n

That Hope-Gaiti went four years without a diagnosis isn\u2019t unusual, Haverkos said.<\/p>\n

\u201cThe median time from presenting with a rash to diagnosis is six years,\u201d he said. \u201cThe slow-growing nature of this cancer means that it often has a bearing on quality of life. The biggest thing that we see is lots of anxiety that builds in patients because they feel the condition is undertreated and that their providers aren\u2019t listening to them.\u201d<\/p>\n

In addition to getting a diagnosis and treatment \u2013 more on that later \u2013 Hope-Gaiti can count herself fortunate in her bout with CTCL: She didn\u2019t have any itchiness.<\/p>\n

\u201cMany patients have such severe itchiness that it can literally drive them crazy,\u201d said Haverkos, noting there are cases of individuals so tormented that they take their own lives.<\/p>\n

That extreme discomfort and the risk of cutaneous lymphomas progressing from the skin to other parts of the body highlights the importance of early detection, Haverkos said. As in Hope-Gaiti\u2019s case with CTCL, rough patches of skin can progress to plaques, defined by the small bumps that are actually tumors. If the disease invades other organs, it is harder to treat and outcomes deteriorate. The disease lays siege to the immune system, leaving patients vulnerable to deadly infections, he noted.<\/p>\n

\u201cWithout good treatment, people do die from the disease, especially when there is blood and organ involvement,\u201d Haverkos said.<\/p>\n

The only \u201ccure\u201d for cutaneous lymphoma is a bone marrow transplant, Haverkos said, but a variety of treatments can do a good job of controlling it. Some are \u201cskin-directed\u201d options like UV light therapy, topical medications, such as steroids, and radiation. In other cases, providers turn to \u201csystemic\u201d therapies. Hope-Gaiti, for example, initially underwent a procedure called photopheresis, which involved drawing her blood, separating the white blood cells, mixing them with a substance that sensitizes them to UVA light, and reinfusing them into her body. The sensitized cells stimulate the immune system to fight the rogue T cells.<\/p>\n

\"A
Oncologist Brad Haverkos speaks at the 10th Annual T Cell Lymphoma Conference in February 2018. Haverkos joined with dermatologist Theresa Pacheco to launch the Multidisciplinary Cutaneous Lymphoma Clinic at UCHealth University of Colorado Hospital, the only one of its kind in the Rocky Mountain region. Photo credit: Larry Young<\/figcaption><\/figure>\n

Another weapon is drugs, including a group that targets and blocks cellular proteins implicated in lymphomas. Haverkos enrolled Hope-Gaiti in a trial of an oral medication, Tenalisib, that for now has cleared her skin of the plaques that had covered them. The drug, developed by Rhizen Pharmaceuticals, treats a specific type of CTCL and is aimed at patients for whom previous treatments have failed or those who have relapsed. Tenalisib received \u201cFast Track\u201d designation from the FDA in April<\/a>, meaning that the clinical review period is six months rather than the usual 10.<\/p>\n

Haverkos, who has presented findings from the clinical trial of the Rhizen therapy<\/a>, offered a note of caution about Tenalisib and other systemic treatments. \u201cNone of the drugs as yet are homeruns,\u201d Haverkos said. \u201cIt\u2019s trial and error and they may take a couple of months to work.\u201d<\/p>\n

Heavy lifting<\/strong><\/h3>\n

The complexity of the disease demands the coordinated response of a multidisciplinary clinic, but laying the groundwork for it at UCHealth required months of preparation. Both Haverkos and Pacheco have long recognized the need. He completed a three-year fellowship in hematology and oncology with the Ohio State University Hospital Program, during which he co-authored a paper<\/a> detailing the importance of multidisciplinary care in treating patients with cutaneous lymphomas.<\/p>\n

Pacheco began her career at the Cancer Center in 2000 working with oncologists and cutaneous lymphoma specialists John Aeling and Paul Bunn<\/a>, both of whom she says were important mentors and supporters as she built her expertise in diagnosing and treating the disease. Aeling eventually retired, and over the years Pacheco steadily built her patient caseload. But without a dedicated multidisciplinary clinic, she frequently had to consult with Bunn \u2013 whom she described as a strong and unselfish mentor \u2013 on the fly.<\/p>\n

After Haverkos arrived from Ohio State in 2015, Pacheco says she began meeting with him monthly, and their conversations eventually led to ironing out the details for a new clinic. The two also made their case to Clay Smith, MD<\/a>, associate chief of the Division of Hematology at the University of Colorado School of Medicine and director of the UCHealth Blood Disorders and Cellular Therapies Center<\/a>, and David Norris, MD<\/a>, chair of the University of Colorado School of Medicine\u2019s Department of Dermatology, and got approval from both to move forward, Pacheco added.<\/p>\n

In addition to Haverkos and Pacheco, the team includes a nurse navigator to handle all the preparation work for patients \u2013 obtaining medical records, scheduling biopsies and lab work, resolving prior authorization and insurance questions, and so on \u2013 before they meet with Haverkos and Pacheco in the clinic. Skilled nurses in the Dermatology<\/a> and Cutaneous Oncology clinics work closely with patients to answer questions, provide education, and generally direct them through what can be a maze of care. A dedicated pathologist, clinical pharmacist, radiation oncologist and wound care specialists provide key clinical support.<\/p>\n

Building that team required a great deal of heavy lifting, much of it taken on by a pair of nurses, Karee Hutches, with the Bone Marrow Transplant Clinic<\/a> on the oncology side and Cristine Gentert, in the Dermatology Clinic. Hutches worked on the project as part of earning her Level 3 credential for UEXCEL, UCHealth University of Colorado Hospital\u2019s professional development ladder for nurses. Gentert, who is now a nurse navigator in the Transplant<\/a> and Hepatology<\/a> clinics at UCH, said she was frequently assigned to work with Pacheco and was \u201chonored\u201d to be part of the plan to streamline care to patients with cutaneous lymphoma.<\/p>\n

\"A
Theresa Pacheco stands at the light therapy unit in the Dermatology Clinic at UCH. The curved unit, in which a patient stands, delivers UVA and UVB light that kills cancer cells in cutaneous lymphoma patients.<\/figcaption><\/figure>\n

Hutches said planning for the new clinic began in October 2016, three months before its official opening in January 2017. An early decision was for providers to see patients in the Dermatology Clinic, because of its procedural room space for biopsies. Just as Haverkos and Pacheco looked to Ohio State, Stanford University and Memorial Sloan Kettering as models for a cutaneous lymphoma clinic, Hutches and Gentert drew on the experience of other multidisciplinary clinics at UCH \u2013 Gastrointestinal and Breast Cancer, for example \u2013 for guidance on key operational details like scheduling. One important decision: Haverkos and Pacheco would see patients together whenever possible.<\/p>\n

Nursing link<\/strong><\/h3>\n

Ironing out the many operational details was not an end in itself but a means to improving patient care, Hutches emphasized. \u201cWe wanted to increase access to care for patients with a rare disease and make their time with us a good experience,\u201d she said.<\/p>\n

An efficient operation means that a patient who needs radiation treatment, for example, can often get it on the same day from radiation oncologist Rachel Rabinovitch, MD<\/a>.<\/p>\n

\u201cWe have her on speed dial,\u201d Hutches said. Likewise, a certified wound care nurse is generally readily available for treatment without having to schedule a separate appointment.<\/p>\n

In addition, Hutches and Gentert \u2013 and now Dermatology nurse Jamie Vang \u2013 worked closely together to serve as a \u201cliaison between the patient and physician,\u201d as Hutches put it. They provide education for patients, go over their after-visit summaries, answer questions about their prognoses, and so on. Early on, Hutches and Gentert got phones dedicated to communications about cutaneous lymphoma patients.<\/p>\n

\u201cWe were often the initial point of contact for patients,\u201d Gentert said. For patients who often had gone five or more years without a diagnosis, it was important that she and Hutches \u201cexplain the process and build rapport with them.\u201d That work, including pointing patients to useful websites like that of the Cutaneous Lymphoma Foundation<\/a>, encouraged them to ask Haverkos and Pacheco and other providers \u201cquestions relevant to their condition,\u201d Gentert said.<\/p>\n

\u201cWe\u2019re still working on patient education from a nursing perspective,\u201d Hutches added. \u201cI\u2019ve made a specific effort to increase my own education and learn from my dermatology colleagues, such as how to treat a lesion when it pops up and how medications can irritate the skin. We share knowledge.\u201d<\/p>\n

The work of Gentert and Hutches \u201ccompletely changed the care we provide in a better way,\u201d Pacheco said. \u201cIt\u2019s faster, more coordinated and more efficient. We\u2019ve relied on a string of very smart nurses.\u201d<\/p>\n

The effort has paid off. Haverkos said the clinic, which is open one half-day a week, routinely sees two or three new patients each session and about a dozen total cases throughout a typical afternoon. That\u2019s well above the numbers seen before the clinic opened.<\/p>\n

Mystery unraveled<\/strong><\/p>\n

The collaborative spirit at the heart of the clinic paid off for Barbara Hope-Gaiti. After receiving a referral to the UCHealth Dermatology Clinic<\/a> from her Boulder dermatology specialists late in 2016, she initially saw Norris, who ordered another biopsy and blood tests that were inconclusive. Norris recommended an appointment in the then-new Multidisciplinary Lymphoma Clinic. Haverkos and Pacheco concluded that Hope-Gaiti needed additional blood tests. She was startled when she learned that meant drawing 13 vials of blood to be sent for exhaustive testing.<\/p>\n

Daunting as that sounded, Hope-Gaiti was ready to get on with it.<\/p>\n

\u201cI felt like I was in the right place at the right time,\u201d she said. \u201cI found both Dr. Haverkos and Dr. Pacheco incredibly communicative, and I needed their focus and direction. It was time for me to know what was going on.\u201d<\/p>\n

When the tests confirmed the CTCL diagnosis, Hope-Gaiti began the photopheresis, which required treatment on consecutive days every other week. Admittedly leery of needles, she\u2019d been relieved with how smoothly drawing 13 vials of blood had gone on her initial visit. The photopheresis treatments meant regular vein punctures that again produced little discomfort \u2013 important for a patient dealing with a mysterious disease with an uncertain prognosis.<\/p>\n

The photopheresis produced some relief, reducing the rash by about a third without any side effects, Hope-Gaiti said. In November 2017, Haverkos and Pacheco asked her to consider enrolling in the Tenalisib trial, not an easy decision as it required not only a PET scan but also a bone marrow sample to ensure the cancer hadn\u2019t spread beyond the skin. Hope-Gaiti agreed, and November 27 became a red-letter day: It was her 71st<\/sup> birthday and she began the study.<\/p>\n

She started on a regimen of four pills a day with regular blood tests and anti-viral medications to protect her suppressed immune system from infection. Today Hope-Gaiti takes two pills with the anti-virals, gets blood tests every two weeks and sees Haverkos and Pacheco regularly in the clinic. She does so gladly. Her skin remains clear. She now awaits the FDA\u2019s decision on approving Tenalisib.<\/p>\n

\u201cIt\u2019s given me a lot of hope that other [treatments] will be found as well,\u201d Hope-Gaiti said.<\/p>\n

In the meantime, she continues to work out and savor each day of her life. \u201cThat\u2019s one of the largest lessons I\u2019ve learned,\u201d she said. \u201cI\u2019m incredibly grateful to Dr. Haverkos and Dr. Pacheco and the entire unit.\u201d<\/p>\n

Hope-Gaiti wants her experience to have broader impact. Earlier this year, she attended a conference on leukemia and lymphoma and another on CTCL, where she met with other patients dealing with the disease. She also wrote to dermatologists who had treated her to inform them of her diagnosis.<\/p>\n

\u201cI want more dermatologists to know about it,\u201d she said, adding that she strongly believes many people have undiagnosed CTCL. \u201cI want to be more of a voice because I don\u2019t feel CTCL has a voice.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Five years ago, Barbara Hope-Gaiti found herself in a battle with a disease that hides in plain sight. Hope-Gaiti, now 71, didn\u2019t worry too much about the red, rough patches of skin when they first appeared. She didn\u2019t like their looks and they irritated her skin, but they weren\u2019t painful. But as time went on, […]<\/p>\n","protected":false},"author":2143,"featured_media":18469,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[28,749,3643,1497,30],"class_list":["post-18465","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-cancer-care-oncology","tag-dermatology","tag-lymphoma","tag-uchealth-university-of-colorado-hospital","tag-university-of-colorado-cancer-center"],"acf":[],"yoast_head":"\nCutaneous 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