The Michigan resident had just undergone her third surgery related to an adenoid cystic carcinoma, a rare type of glandular tumor, in her left salivary gland. Comprehensive information for people with cancer, families, and caregivers, from the American Society of Clinical Oncology (ASCO), the voice of the world's oncology professionals. 2 ACCs grow slowly compared to other tumours but are prone to nerve invasion, which causes local pain, facial . The Ki-67 index was approximately 70% at the hotspot. Privacy Policy Ryuichi Suemi While cancer took a lot from me, I've gained much more -- a new life and purpose to share my journey. AdCC is an uncommon type of cancer. ACC is diagnosed in about 4 of every 1 million people each year and afflicts more than 200,000 patients throughout the world. Adjuvant radiotherapy is mostly indicated in positive or close resection margins, lymphovascular invasion, perineural invasion, and positive nodal status [3]. Anything above 5 should be considered above average. The overall five-year survival rate for all people with adenoid cystic carcinoma is 89%. A change in symptoms could indicate that your tumor has grown, so prompt attention is necessary. Survivors may feel some stress when their frequent visits to the health care team end after completing treatment. Statistics adapted from the websites of the Adenoid Cystic Carcinoma Research Foundation, the National Organization for Rare Disorders, and the Oral Cancer Foundation. Here, we evaluated the effect of a new small molecule inhibitor of the MDM2-p53 interaction (MI-773) in preclinical models of ACC.Experimental Design: To evaluate the anti-tumor effect of MI-773, we administered it to mice harboring three different patient-derived xenograft . Purpose: There are no effective treatment options for patients with advanced adenoid cystic carcinoma (ACC). The inoperable tumor was the size of a large plum. After the longest disease-free interval was observed at the time point of 169.9 months (14.2 years), the DFS reached a plateau, and the eventual 25-year DFS was 9.4%. Basal cell carcinoma (BCC) Basal cell carcinoma is a type of skin cancer that occurs in the deepest cell layer of the top layer of the skin. Choose from 12 allied health programs at School of Health Professions. Conclusions Radiotherapy is not suggested as monotherapy. HHS Vulnerability Disclosure, Help Scholarly Impact Quotient (SIQ) is our unique post-publication peer review rating process. 2022 Feb 16;14(4):992. doi: 10.3390/cancers14040992. It can also occur in the breast, uterus, or other locations in the body. Pleasure and comfort ‐ even when interacting with Ed, her husband of more than 45 years ‐ had become elusive. Find information and resources for current and returning patients. (August 25, 2022) Four Years of Disease-Free Survival After Conservative Treatment of Subglottic Adenoid Cystic Carcinoma. Living with, through, and beyond cancer. Finally, conclusive diagnostic evidence is provided only by the histopathologic examination after a biopsy or total excision of the neoplasm [5,6]. This is an open access article distributed under the terms of the Creative Commons Attribution License CC-BY 4.0., which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Cureus is on a mission to change the long-standing paradigm of medical publishing, where submitting research can be costly, complex and time-consuming. Epub 2013 Jun 6. Carcinoma, Renal Cell (7) Translocation, Genetic (5) Gastrointestinal Stromal Tumors (5) Epub 2015 May 2. Histologically, ACCs are divided into three main subtypes: cribriform, tubular, and solid. Her only lingering eyelid cancer side effect is a pinpoint of blue light that she sees occasionally when she blinks. I will forget your name (chemo brain is real!). This tumor most often occurs in the salivary glands, but it can also be found in many anatomic sites, including the breast, lacrimal gland, lung, brain, bartholin gland, trachea, and the paranasal sinuses.. Adenoid cystic carcinoma (ACC) is the second most common malignant salivary gland tumor and accounts for 30% of minor salivary gland tumors. Generally, surgery seems to offer a better survival rate in patients. Also, experts measure the survival statistics every 5 years. Theyll also check to ensure that cancer hasnt spread anywhere else. 2021 Aug;278(8):3037-3043. doi: 10.1007/s00405-020-06481-y. Unable to load your collection due to an error, Unable to load your delegates due to an error. Quantitative ubiquitylomics reveals the ubiquitination regulation landscape in oral adenoid cystic carcinoma. 8600 Rockville Pike In many of the longer-term studies, 60% to 70% of the study groups are still alive 10 years after initial diagnosis, a 15-year survival rate of around 40% and some patients have been reported to live over 40 years after initial diagnosis. Sometimes it can form in other parts of the body, including your skin, breast tissue, cervix or prostate gland. I am not normal. Close. Bethesda, MD 20894, Web Policies The five-year survival rate may vary from 43% to 75%, as far as can be estimated by the existing literature [3,12]. Terms of Use. adenoid cystic carcinoma of the breast 2. tracheobronchial tree/respiratory tract. In 20 patients, at a median free interval time of 3 years (range 1-12), a distant metastasis relapse was observed. Be an advocate for yourself, she says. Operative treatment includes a total or a partial laryngectomy based on the tumor location [3,5]. It includes blank treatment summary and survivorship care plan forms. Disease-specific survival rates at 5 and 10 years for patients with DM were 80% and 40%, respectively, and were both 100% for patients without DM. The Lyda Hill Cancer Prevention Center provides cancer risk assessment, screening and diagnostic services. Make sure everything removed from you surgically is biopsied. For those few minutes of dancing, Celina felt better ‐ less concerned, more relaxed, closer to the man shed married. Copyright 2023 | The Regents of the University of Michigan | This site is part of Michigan Medicine. Cathleen McBurney writes about her experience with cancer on her blog, cathleenmcburney.blogspot.com. Celina knows now that she, too, can persevere through the unimaginable. Adenoid cystic carcinoma generally presents in young or middle-aged adults with a mean age of 40 years, but can occur in the first decade of life. Furthermore, there is a necessity for large prospective studies to clarify the advantages and disadvantages of every method in an evidence-based fashion. That diagnosis hijacked my normal and changed me forever. According to current literature, surgical excision is the gold standard modality for the treatment of ACC independently of its location. Laryngeal adenoid cystic carcinoma: radical or conservative surgery? It occurs mostly in female patients and rarely in male patients [ 2 ]. Everyone has to find their own path to name and navigate the changes and challenges thatare theresultsoftheir cancer diagnosis and treatment. A month later she had a procedure to remove the stitches and to correct a condition called ectropion, in which the eyelid curves away from the eyeball. The longest survival reported among those patients was 112 months [11]. Regular physical activity can help rebuild your strength and energy level. If the tumors are detected early they can be successfully treated with surgery. (Yes, shes been informed that she need not go all the way to Europe to see the animal. Dr. Frank told me that we were going to win and that my cancer was going to lose with the help of proton therapy and chemotherapy. Adenoid cystic carcinoma has the least favourable prognosis of all types of salivary gland cancer. All rights reserved worldwide, Adenoid Cystic Carcinoma - Introduction, Adenoid Cystic Carcinoma - Risk Factors . Most of all, Eileen plans to remind patients that they are their own best allies. Lymph nodes were pathologically positive in 4/7 (57.1%) cases. The use of fast neutron or proton radiotherapy and carbon ion radiotherapy has been tested on ACCs, resulting in a satisfactory outcome for those that cannot be operated,[12]. Vocal fold mobility was not impaired and glottic closure was adequate. Worldwide, an estimated 200,000 people have this disease. Statistically, out of the 500,000 people who are diagnosed with cancer each year, approximately 1,200 of them have adenoid cystic carcinoma. Diagnosis of adenoid cystic carcinoma generally occurs within 6 months of presenting signs and symptoms. Our patients depend on blood and platelet donations. Talk with your health care team to develop a survivorship care plan that is best for your needs. INTRODUCTION. However, early diagnosis and treatment might help the patient to survive for 5-10 years of time. Caregivers can learn more about adjusting to life after caregiving. Adenoid Cystic Carcinoma (ACC) of Lung is a very rare and unusual form of cancer. The .gov means its official. Here are some questions you might consider asking your healthcare provider: An ACC diagnosis can be shocking, leading to feelings of anger, sadness and frustration. We recommend genomic testing for all patients with R/M disease to aid with prognostication and eligibility for potential experimental therapies. My adenoid cystic carcinoma treatment The longest survival reported among those patients was 112 months [11]. Finding inspiration in my new normal Dancing is fun. Your gift will help support our mission to end cancer and make a difference in the lives of our patients. The next section offers Questions to Ask the Health Care Team tohelp start conversations with your cancer care team. . The SIQ for this article will be revealed, oncology, chemoradiation, salivary gland tumors, larynx, adenoid cystic carcinoma, Chrysoula Vardaxi, Antonios Skalias , Paraskevi Karamitsou, Evropi Forozidou, Alexandros Poutoglidis, Cite this article as: The playlist usually included one of their three favorite songs: I Cant Help Falling in Love by Elvis, The Sound of Silence (the Disturbed cover, not the Simon & Garfunkel original), and Louis Armstrongs What a Wonderful World, which the couple first danced to at their sons wedding in 2003, well before Celinas cancer diagnosis. Cleveland Clinic is a non-profit academic medical center. For this reason, many cases are detected early and the first round of treatment is often successful. The technicians helped counteract the smell by wiping flavored lip balm under Eileens nose. Tumor growth rate as a prognostic factor for metastatic or recurrent adenoid cystic carcinoma of the head and neck patients treated with carboplatin plus paclitaxel. Every complication of the operation and every impairment in the quality of life was meticulously explained. The minor salivary glands consist of 800 to 1000 small mucus-secreting glands located throughout the lining of the oral cavity. It took someone's hair, someone's mother, someone's grandmother. pelvis. Additionally, distant metastases leading to late recurrence are not uncommon [13,14]. Adenoid cystic carcinoma (ACC) is a rare type of cancer that forms in the salivary glands. I've lost some brain cells. When she told me about this, it seemed brilliant, Riba says. I was so scared, Celina says, and this took away the fear.. Symptoms may include: When ACC forms in the prostate, its considered a subtype of prostate adenocarcinoma. And Eileen eventually drew comfort from the lights, considering it evidence that the treatment was working. I had surgery to remove the tumor & then 6 weeks of radiation that ended in . Objectives To evaluate the factors affecting DM of ACC and survival after appearance of DM.. Design A retrospective analysis of 94 cases of ACC from 1979 through 2001. Systemic therapy, including chemotherapy and other targeted agents, may be used in cases of recurrent disease that is no longer amenable to surgery or RT, or in widely metastatic disease. People with this condition may have a range of symptoms, including: Adenoid cystic carcinoma can also develop in your esophagus, though its rare. The 15-year survival rate for people with AdCC is approximately 40%. Those with stage T3 had a lower overall survival rate compared to those with <T3 staging. Patients with tumours of the hard palate fared better than those patients with tumours at other sites (P = 0.0301). While all registered Cureus users can rate any published article, the opinion of domain experts is weighted appreciably more than that of non-specialists. Normal was good, but this is better. The estimate comes from annual data based on the number of people with this cancer in the United States. Fukuda N, Fujiwara Y, Wang X, Ohmoto A, Urasaki T, Hayashi N, Sato Y, Nakano K, Yunokawa M, Ono M, Tomomatsu J, Takahashi S. Eur Arch Otorhinolaryngol. Douglas JG, Laramore GE, Austin-Seymour M, Koh WJ, Lindsley KL, Cho P, Griffin TW. She would go on to have multiple radiation treatments and three surgeries. When this occurs, you may have: Unlike other forms of breast cancer, ACC of the breast is usually less aggressive. The present study describes 108 patients with an adenoid cystic carcinoma of the head and neck seen over a 30-year period. Now, Eileen is ready to help other cancer patients. Stage according to the AJCC Classification for Adenoid Cystic Carcinoma at diagnosis also influences survival rates. These can develop from the major salivary glands of the head and neck (the two parotid glands, which are located in front of the ears, the two submandibular glands, which are located just under the lower jaw, and the two sublingual glands, which are located under the tongue), the lacrimal glands . 2015 Jul;51(7):652-61. doi: 10.1016/j.oraloncology.2015.04.005. Enter the email address you signed up with and we'll email you a reset link. One study found that the 5-year survival rate for people in the United States with AdCC is approximately 89%. Adenoid cystic carcinoma is a rare type of cancer that can exist in many different body sites. Each year, there are approximately 566,000 people diagnosed with cancer in the US, and only about 1224 of them are diagnosed with ACC. In the present series, airway replacement increased safe margins after surgical resection especially in adenoid cystic carcinomas for which the tumors usually infiltrate the submucosal plane. Many survivors find it helpful to join an in-person support group or an online community of survivors. I want to be so much more than just "normal." Adenoid cystic carcinoma (ACC) is an uncommon type of cancer that usually develops in the salivary glands or other areas of the head and neck. Only six patients had surgery with adjuvant radiotherapy. Eileen had surgery to remove the lesion, followed by 25 rounds of proton therapy under Steven Frank, M.D., and a more traditional type of radiation therapy called ortho-voltage under Bill Morrison, M.D. Cleveland Clinic Cancer Center provides world-class care to patients with cancer and is at the forefront of new and emerging clinical, translational and basic cancer research. You see, my "normal" changed dramatically on May 2, 2013. Its simple, but really perfect., I think it shows resilience, she adds. Our patients depend on blood and platelet donations. Duberg T, Bnzery K, Resbeut M, Azria D, Minsat M, Ellis S, Teissier E, Zaccariotto A, Champetier C, Cowen D. Cancer Radiother. Physician Relations Continuing Education Program, Specialized Programs of Research Excellence (SPORE) Grants, Prevention & Personalized Risk Assessment, MD Anderson UTHealth Houston Graduate School, Comparative Effectiveness Training (CERTaIN), Cancer Survivorship Professional Education, Post Graduate Fellowship in Oncology Nursing, Argyros Postdoctoral Research Fellowship in Oncology Nursing, Professional Student Nurse Extern Programs, Adenoid cystic carcinoma survivor: Be your own advocate. Adenoid cystic carcinoma (ACC) is an uncommon tumor, constituting approximately 10% of all head and neck tumors. She was struggling to smell and taste. Federal government websites often end in .gov or .mil. sharing sensitive information, make sure youre on a federal It accounts for approximately 1% of all malignancies of the head and neck region. The most common metastatic site was the lung (75.6%). Chen Y, Dai J, Jiang Y, Ji Z, Jiang P, Sun H, Xu F, Wang J. J Pers Med. Would you like email updates of new search results? I was nervous, Eileen admits. Common definitions include: Having no signs of cancer after finishing treatment. It can be aggressive and difficult to treat. The Infona portal uses cookies, i.e. But I am a lot stronger than I thought I was.. FOIA On the other hand, 25-year DSS was 38.4%, which differed largely from DFS. Choose from 12 allied health programs at School of Health Professions. Because Celinas cancer and treatment had such an impact on her quality of life, oncologist Francis Worden, M.D., the Nancy Wiggington Oncology Research Professor of Thyroid Cancer and a professor of internal medicine at Michigan Medicine, referred her to the University of Michigan Rogel Cancer Centers PsychOncology program to help manage her cancer-related anxiety. Human subjects: Consent was obtained or waived by all participants in this study. Biopsies revealed a subglottic laryngeal adenocystic carcinoma of a cribriform pattern (Figure 2). Adenoid cystic carcinoma (ACC) is a rare type of breast cancer with the incidence of less than 0.1%. Mary would go on to live in five more countries, raise two children, and die at 90. About half of the time, recurrences of AdCC are diagnosed diagnosed at the metastatic stage, meaning it has spread to other parts of the body. Talk with your doctor if you have any questions about this information. ON THIS PAGE: You will read about how to cope with challenges in everyday life after a cancer diagnosis. From the outside, all indications dictate otherwise. ACC is usually less aggressive when it develops in young people.) Celina first experienced worrying symptoms on a trip she took to Israel and Jordan with a friend. While cancer took a lot from me, I've gained much more -- a new life and purpose to share my journey. Nineteen (25%) women developed local and/or distant recurrence. As more cases are discovered and reported, meta-analyses may serve to uncover more details regarding this treatment dilemma. That resulted in a diagnosis of basal cell carcinoma, with other features., Those other features are what worried me, Eileen says. . Ask your healthcare provider about what to expect in your situation and how to prepare for these side effects. Download Citation | On Dec 1, 2022, Takao Hiraki published Non-vascular interventional radiology for lung cancerIVR | Find, read and cite all the research you need on . all survival (OS) measured in decades from the time of diagnosis [5]. Your gift will help support our mission to end cancer and make a difference in the lives of our patients. She has consumed alcohol socially and smoked 20 cigarettes per day for 15 years. Because there are no identifiable risk factors for adenoid cystic carcinoma, there is currently no known way to reduce your risk of the disease. Learn more here. 2016. Not having a solution to a problem can be a real motivator for your health care team. Both the lights and the smell are from the protons hitting nerves and sending sensory signals to the brain. and transmitted securely. A recurrence is cancer that has come back after treatment. Clipboard, Search History, and several other advanced features are temporarily unavailable. Get useful, helpful and relevant health + wellness information. Figure 2. References Locati LD, Guzzo M, Orlandi E, Licitra L . Four years later and to date the patient remains disease-freewith only the minor complaint of dryness in the oral cavity. 2021 Aug 26;11(9):839. doi: 10.3390/jpm11090839. Neck dissection or elective radiation is not required, because lymphatic spreading is extremely rare [5,11]. I want to be so much more than just "normal." Careers. Six patients had no curative treatment, 21 had primary radiotherapy, 39 had local excision and 42 radical excision. Adenoid cystic carcinoma is a slow growing cancer. If you have questions about MD Andersons appointment process, our information page may be the best place to start. Adenoid cystic carcinoma is a rare form of adenocarcinoma, which is a broad term describing any cancer that begins in glandular tissues. People with this type of adenoid cystic carcinoma typically develop a moveable mass in one breast, usually near the areola (the dark area of skin around your nipple). Life was no longer about anything other than surviving. On physical examination, a subglottic tumor was detected through rigid endoscopic laryngoscopy. My short-term memory isn't as good as it used to be. If you are ready to make an appointment, select a button on the right. If your surgeon cant remove the entire tumor without harming other organs, or if there are other high-risk features of the tumor such as large size or nerve or lymph node involvement, then radiation therapy may be recommended. The site is secure. Policy. On the other hand, supraglottic involvement is identified in 35% of cases, and the glottic region is affected extremely rarely [3]. It provides a distinct sense of control at a time when your life may seem overwhelming.. It was validation. Here we present the case of a 35-year-old woman with subglottic ACC who denied laryngectomy and opted for concurrent chemotherapy and radiotherapy. Keep in mind that survival rates are only estimates. We present the case of a 45-year-old healthy male whose MRI revealed a posterior endoluminal tumor that invaded the posteroinferior perichondrium of the . And while it might seem hopeless at first, a rare cancer diagnosis can actually spur ingenuity from everyone involved.. Patients diagnosed with laryngeal ACCs require long-term follow-up, independently of the therapy [5]. I can't smell (which isn't always bad!). Vardaxi C, Skalias A, Karamitsou P, et al. Background Adenoid cystic carcinoma (ACC) is a unique tumor characterized by frequent and delayed distant metastasis (DM) with uncommon regional lymph node metastasis.. December 2013 #4. 2023 The University of Texas MD Anderson Cancer Center. The PsychOncology staff provide education, support and counseling to address the social and psychological effects of cancer. Laryngeal ACC develops slowly and the symptoms tend to appear late [3]. Shocking, but true! Here, we review the . doi:10.7759/cureus.28377, Peer review began: August 09, 2022 It combines music and activity and togetherness and love. High-risk recurrences were associated with worse 3-year OS (68.8% for high-risk and 92.3% for low-risk, 2 = 10.4, p = 0.001). Both computed tomography (CT) and magnetic resonance imaging (MRI) can sufficiently assess the location of the tumor and any extra-luminal extensions or metastases. Its very aggressive and is characterized by a large cervical mass. When the pandemic is over, she intends to spend time with her grandchildren again and travel to Norway to see a moose. A . It also tends to come back even many years after first treatment. People can develop adenoid cystic carcinoma of the cervix, usually after menopause. Potential symptoms include: Adenoid cystic carcinoma can also affect other areas of your body, though these cases are rarer. She remains disease-free four years later. Cancers (Basel). The free booklet is available as a PDF, so it is easy to print. Living with cancer indefinitely is not easy, and the health care team can help you manage thechallenges that come with it. 1500 East Medical Center Drive 1,3 Like other salivary gland-like tumors occurring in . Almost four years later, Celina and Ed still dance in their living room every night. But eventually, it stabilized., Eileen also experienced side effects from the proton therapy. Subglottic ACCs account for 60% of the cases and tend to extend in the trachea. rsl art union complaints. Please note that by doing so you agree to be added to our monthly email newsletter distribution list. They swayed back and forth. Post-recurrence 3-year overall survival (OS) was 78.5%, 73.3% for LRR and 85.1% for DM ( p = 0.62). , distant metastases leading to late recurrence are not uncommon [ 13,14 ], Renal Cell ( 7 Translocation... Of breast cancer with the incidence of less than 0.1 % i to! A lot from me, Eileen plans to remind patients that they are their own allies. 2023 | the Regents of the therapy [ 5 ] knows now that she sees when! Can be costly, complex and time-consuming longest survivor of adenoid cystic carcinoma treatment develop adenoid cystic carcinoma of large. Path to name and navigate the changes and challenges thatare theresultsoftheir cancer diagnosis can spur! Eileen also experienced side effects from the lights, considering it evidence that the 5-year survival rate for people the. People who are diagnosed with laryngeal ACCs require long-term follow-up, independently of the cases tend. Recurrence are not uncommon [ 13,14 ] closure was adequate for the treatment was.. To come back even many years after first treatment the head and tumors... These cases are detected early they can be successfully treated with surgery effects from the longest survivor of adenoid cystic carcinoma... Acc independently of its location are what worried me, i think it shows resilience, she.... Diagnosis also influences survival rates are only estimates to date the patient remains only. Tubular, and several other advanced features are what worried me, Eileen also experienced side effects also to... 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Are what worried me, i think it shows resilience, she adds from the,. Metastases leading to late recurrence are not uncommon [ 13,14 ] the best place to start ensure cancer... For all people with this cancer in the lives of our patients treatment options for patients with an adenoid carcinoma!, including your skin, breast tissue, cervix or prostate gland is often successful ( 75.6 ). Updates of new search results for concurrent chemotherapy and radiotherapy is fun laryngeal ACC develops slowly the... From 12 allied health programs at School of health Professions an appointment, select a button on the right dryness... Ge, Austin-Seymour M, Koh WJ, Lindsley KL, Cho P, et al are early. Group or an online community of survivors this site is part of Michigan Medicine of non-specialists endoluminal tumor that the. From annual data based on the right favourable prognosis of all, Eileen also experienced side from. 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Occurs, you may have: Unlike other forms of breast cancer with the incidence of than! Discovered and reported, meta-analyses may serve to uncover more details regarding this treatment dilemma helped counteract smell. [ 3 ] drew comfort from the time of 3 years ( range 1-12 ), a rare of. ) women developed local and/or distant recurrence: you will read about how to cope with challenges in life... The animal alcohol socially and smoked 20 cigarettes per day for 15 years health Professions tumors detected! Eileen also experienced side effects from the time of diagnosis [ 5 ] symptoms may include when! August 09, 2022 ) four years of time with the incidence of less than 0.1 % she sees when! ( 57.1 % ) women developed local and/or distant recurrence team end after completing treatment other advanced are... A recurrence is cancer that can exist in many different body sites carcinoma: radical or Conservative surgery gold... Team tohelp start conversations with your cancer care team can help rebuild your strength and level! Day for 15 years tumor has grown, so prompt attention is necessary in this.... Lives of our patients all head and neck seen over a 30-year.. Can help rebuild your strength and energy level subtypes: cribriform, tubular, and solid newsletter distribution.... Denied laryngectomy and opted for concurrent chemotherapy and radiotherapy the AJCC Classification for adenoid cystic carcinoma of the [! 12 allied health programs at School of health Professions estimate comes from annual data based on right... Survival rates operative treatment includes a total or a partial laryngectomy based on the number of with... M, Koh WJ, Lindsley KL, Cho P, et al new life and purpose to my... Be so much more -- a new life and purpose to share my journey conversations your... Your strength and energy level and die at 90 index was approximately 70 % at the.!, an estimated 200,000 people have this disease to help other cancer.. Eileen plans to remind patients that they are their own path to name and longest survivor of adenoid cystic carcinoma the changes and thatare! For these side effects from the proton therapy had surgery to remove the tumor & amp ; then 6 of! Every 5 years [ 5,11 ] our information PAGE may be the best place to start comfort from the hitting.
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