![Know AML](/img/default-banner.jpg)
- Видео 179
- Просмотров 627 110
Know AML
Добавлен 2 мар 2018
Know AML is the first global AML education and awareness initiative that aims to direct patients and caregivers to the available information, resources, and support to deal with AML. Know AML collaborates with a large global network of advocates, who together ensure that the AML community has access to the latest information and resources, providing the best possible support and care for patients with AML and their families.
Addressing concerns around side effects in clinical trials
Know AML conducted a poll among patients with acute myeloid leukemia (AML), and their families and caregivers, revealing a concern regarding potential side effects that may be experienced during participation in a clinical trial. Know AML was pleased to speak with Gail Roboz, physician at Weill Cornell Medicine and Know AML ambassador, to address this concern.
Roboz emphasizes that clinical trials can offer improved treatment options beyond the standard of care and reassures patients that they often do not involve completely novel drugs. She encourages patients to compare listed side effects in trial treatments to those of standard of care treatments, and to consider participation in clini...
Roboz emphasizes that clinical trials can offer improved treatment options beyond the standard of care and reassures patients that they often do not involve completely novel drugs. She encourages patients to compare listed side effects in trial treatments to those of standard of care treatments, and to consider participation in clini...
Просмотров: 53
Видео
Caring for someone with AML
Просмотров 694 месяца назад
In preparation for AML World Awareness Day 2024, Know AML spoke to Dorcas Hills, a caregiver for Ralph Hills, a patient with acute myeloid leukemia, and Know AML chair. Dorcas discusses her experience as a caregiver for Ralph, the impact on her well-being, and some of the strategies she uses to cope. As a caregiver, Dorcas also highlights the importance of acknowledging your stress and emotions.
Q&A session
Просмотров 739 месяцев назад
During the latest Know AML community meeting, Professor of Haemato-oncology and Know AML ambassador, Charles Craddock, and fellow Know AML ambassadors discuss important topics from the long term success of stem cell transplants, new research opportunities surrounding the gut microbiome and the impact and importance of psychological monitoring and intervention throughout a patient's journey with...
Expert-led session: The transplant process - what to expect, and how to manage the impact
Просмотров 699 месяцев назад
During the latest Know AML community meeting, Professor of Haemato-oncology and Know AML ambassador, Charles Craddock, delivers an expert-led session discussing the transplant process - what to expect, and how to manage the impact. Professor Craddock covers a broad range of topics including allogeneic transplantation, graft vs leukemia effect, predicting transplant toxicity and the UK-based IMP...
Patient-led session: Extending remission - the effects of longer-term treatment for AML
Просмотров 1139 месяцев назад
During the latest Know AML community meeting, Ralph Hills, Chair of the Know AML ambassador group, delivers a patient-led session discussing extending remission - the effects of longer-term treatment for AML. Ralph shares his experiences of his patient journey with AML and provides his perspective on diagnosis, treatment and long-term survival.
Provision of and access to wellbeing and mental health support | Know AML Ambassador Workshop
Просмотров 24Год назад
During this recent interactive workshop, Vanessa Marais, Clinical Psychologist, delivers a presentation on the provision of and access to wellbeing/mental health support. Our Know AML Ambassadors go on to discuss the provision mental health support of healthcare providers in a global context and the possibility of a global information booklet providing mental health advice for patients after ex...
Social isolation and the impact of social support on survival | Know AML Ambassador Workshop
Просмотров 33Год назад
During this recent interactive workshop, Know AML ambassador Rachel Saks, Cancer Support Community, delivers a presentation on social isolation and the impact of social support on survival. Our Know AML Ambassadors discuss the impact of age on social isolation, barriers that lead to social isolation such as differences in healthcare system guidelines, and the important determinants that can hel...
Introduction and background to health inequality | Know AML Ambassador Workshop
Просмотров 32Год назад
During this recent interactive workshop, Know AML ambassador Zack Pemberton-Whiteley, Chair of the Acute Leukemia Advocates Network and CEO of Leukaemia Care, delivers a presentation on health inequality and global health equity. Our Know AML Ambassadors then drill down into these topics further, discussing factors that are associated with health inequality and the geographical variations in me...
Quality of life of caregivers, family, and friends (including patients' self-perceived burden)
Просмотров 84Год назад
In this video, Ralph Hills, a Know AML ambassador who was diagnosed with AML 9 years ago, provides his insights on the quality of life of caregivers, family, and friends of those with AML. Ralph leads the discussion with other Know AML ambassadors on the importance of patients having access to specific information that will help them through their AML journey, the time required for patients and...
Provision of patient information (treatment options, self-care, emotional & community support)
Просмотров 44Год назад
During a recent Know AML ambassador meeting, Lise-lott Eriksson, CEO of the Swedish Blood Cancer Association (Blodcancerförbundet), facilitated a discussion on the provision of patient information in AML. The ambassadors provide a wealth of information for the AML community on how they can access information on treatment options, self-care, emotional support, and community support for both pati...
Practices to manage mental health during different stages of AML (part 2: treatment and recovery)
Просмотров 91Год назад
In preparation for AML World Awareness Day 2023, Know AML spoke to Vanessa Marais (Stellenbosch, ZA), a clinical psychologist specializing in oncology. Vanessa discusses some of the practices she believes can help manage a patient's mental health throughout their AML journey. Vanessa suggests that “when you are discharged, set yourself some realistic goals for each day.”
Practices to manage mental health during different stages of AML (part 1: diagnosis and prognosis)
Просмотров 65Год назад
In preparation for AML World Awareness Day 2023, Know AML spoke to Vanessa Marais (Stellenbosch, ZA), a clinical psychologist specializing in oncology. Vanessa discusses some of the practices she believes can help manage a patient's mental health throughout their AML journey. Firstly, she emphasizes the importance of talking to someone you trust. Completing simple activities, for example, breat...
Can you please share what strategies, if any, you used to deal with the news of an AML relapse?
Просмотров 88Год назад
In preparation for AML World Awareness Day 2023, Know AML spoke to Lizzie Dean, a Know AML ambassador, who shared what strategies she used to deal with the news of an AML relapse. Lizzie shares how she felt scared and had to learn to accept the news of a relapse. She tried to not worry about the things she could not control and instead focus on those she could control. Lizzie discusses how she ...
What was your experience during AML treatment? What were the most challenging parts of it?
Просмотров 142Год назад
In preparation for AML World Awareness Day 2023, Know AML spoke to Lizzie Dean, a Know AML ambassador, on her experience during AML treatment and what she found the most challenging. Lizzie discusses how lonely it was during treatment as she spent weeks in a hospital room. Even though nurses checked on her and she had visitors every day, she emphasized “the days did feel very long and they all ...
Do you feel that self-care measures aid in managing the side effects of chemotherapy? And if so how?
Просмотров 47Год назад
In preparation for AML World Awareness Day 2023, Know AML spoke to Erik Aerts (University of Zurich, Zurich, CH), a specialist nurse and Know AML ambassador. Erik discusses which self-care measures he believes aid in managing the side effects of chemotherapy. Firstly, he highlights the importance of nutrition and working with a nutrition specialist. In addition, he advises how patients should a...
What practices can patients use to help their mental health through the stages of their AML journey?
Просмотров 133Год назад
What practices can patients use to help their mental health through the stages of their AML journey?
How would you advise other patients with AML to approach remission from a self-care perspective?
Просмотров 118Год назад
How would you advise other patients with AML to approach remission from a self-care perspective?
Do you feel that self-care measures aid in managing the side effects of chemotherapy?
Просмотров 59Год назад
Do you feel that self-care measures aid in managing the side effects of chemotherapy?
Can you please share what strategies, if any, you used to help deal with the news of an AML relapse?
Просмотров 78Год назад
Can you please share what strategies, if any, you used to help deal with the news of an AML relapse?
What three pieces of advice would you give to a person who just learned of their AML diagnosis?
Просмотров 149Год назад
What three pieces of advice would you give to a person who just learned of their AML diagnosis?
Why is it important to take part in AML World Awareness Day 2023?
Просмотров 27Год назад
Why is it important to take part in AML World Awareness Day 2023?
Why is it important to take part in AML World Awareness Day 2023?
Просмотров 49Год назад
Why is it important to take part in AML World Awareness Day 2023?
Why is it important to take part in AML World Awareness Day 2023?
Просмотров 72Год назад
Why is it important to take part in AML World Awareness Day 2023?
Why is it important to take part in AML World Awareness Day 2023?
Просмотров 59Год назад
Why is it important to take part in AML World Awareness Day 2023?
Why is it important to take part in AML World Awareness Day 2023?
Просмотров 37Год назад
Why is it important to take part in AML World Awareness Day 2023?
Why is it important to take part in AML World Awareness Day 2023?
Просмотров 32Год назад
Why is it important to take part in AML World Awareness Day 2023?
What is it like to participate in a clinical trial?
Просмотров 107Год назад
What is it like to participate in a clinical trial?
Experience of participating in a clinical trial
Просмотров 50Год назад
Experience of participating in a clinical trial
How are clinical trials designed to maximize inclusivity & provide data about a variety of patients?
Просмотров 44Год назад
How are clinical trials designed to maximize inclusivity & provide data about a variety of patients?
Will it be possible to treat AML with oral tablets?
Просмотров 146Год назад
Will it be possible to treat AML with oral tablets?
Благодарю! Я поняла заболевание девочки, которая мне очень нравится. Благодарю Бога за все. За знаки , на физике..
Q algun medico m escuchara o al menos respondiera algunas dudas con respecto a lo sucedido con mi unico hijo..yo aun estoy muy mal
Mi hijo murio de lma lo diagnostican y una semana después lo perdí...no logro entender nada...el solo parecía tener amigdalitis.como es posible?
Thank you ❤
Avete dimenticato il forte prurrito come sintomo
Ну 90процентов симптомов у меня есть ,,, но нет врача лечущего или даже вообще кого го либо.
Врач нужен гематолог
Noone should have taken the mrna vaccines,
Здравствуйте, да это хроническое заболевание, поддерживать жизнь таблетками 😢
My mom who was 46 fit and healthy was diagnosed on a Monday and passed by that Saturday. She had no symptoms before that Sunday. Sunday she had a fever and then that Monday morning she had extreme leg pain and that is why she went into the ER and they found out she had Acutr Myeloid Leukemia.
My mom who was 46 fit and healthy was diagnosed on a Monday and passed by that Saturday. She had no symptoms before that Sunday. Sunday she had a fever and then that Monday morning she had extreme leg pain and that is why she went into the ER and they found out she had Acutr Myeloid Leukemia
рак крови мое любимое заболевание!
рак крови это мое любимое заболевание!
О чем вы?
Я имел виду самое именитое заболевание в мире!
@@user-sj7ui4rm4s чего . Почему так?
❤
Ayer falleció mi tio con esa enfermedad😢😢😢 que Dios lo tenga en su gloria
Me han dejado investigar sobre esta enfermedad y no saben lo impactante que fue para mi con encontrarme con algo tan fuerte, gracias por hacer videos informativos fue de grab ayuda no solo oara una investigación sino que también oara concientizar ❤
_______❤___
Tengo mi hijo de 5 años tiene 9 de hemoglobina plaquetas en 250 pero en su frotis se observó mielocitos y metamielocitos.. Además presenta moretones fiebre. Sudoración y baja de peso que podría ser?
Married with children
Sobreviví, la tuve hace 30 años y medio! Resiliencia 😊
Такие симптомы есть у всех.
Причины?
Mi hermano perdió la batalla con esta maldita enfermedad
estoy muy cansada y me salen hematomas sin razón, estos síntomas son suficientes para ir aun chequeo medico?
Mi hijo tiene 8 años . El viernes le voy hacer todos sus examanes . El tenia principios de anemia yo le di sus medicamentos . Y se sentia mejor eso fue el 14 / 11/2022Pero hace unos dias . Me dice q esta cansado .😢 , q se siente mariado , q le duele el pecho y esta palido . 😢 tengo miedo .. mucho miedo
Vas a ver que lo que tiene es una anemia solamente. Ve todos los videos de Metabolismo TV relacionados con esta situación te ayudará mucho
218
Я с Молдавии лечусь в Италии, пью 4 таблетки нилотиниба или иматиниба, иногда меняет врачиха, но уже прошло 10 лет, у меня ощущение что сажают на таблетки на целую жизнь. Ну так мне кажется что не хотят чтобы мы окончательно выздоровели! врачи соблюдают только какие-то мутные протоколы, и как будто они боятся высказаться, думать своей головой. Пеи лекарства и блогодори что жив, они говорят. А то что есть побочные эффекты их не интересует! Детей зачать нельзя. Я честно уже им не верю, они как муравьи пашут на биг фарма! И они это еще называют прогресс! 😢
Любую болезнь по симптомам можно примерить на себя
Dear Doctor.... I am a RN...ive a patient 92 years young. who up until she started jadenu ( iron build up) was doing ok...she took the med only 9 days...i had to bring her to emergency. Which was horrible experience. ..i will tell you my patient never came back 100 percent....i bring my patient to get blood transfusions...the blood she was getting was actually good for 30 thru 35 days..she would have transfusions every 3 weeks. ...now the blood expires in 13 to 20 days ..last transfusion lasting 5 days her HGB was 6.7...dr..my patient wants to live little longer...she dont want hospice care. In which this has been discussed..you know and i know there would be no more transfusions...dr ...please what can i personally do or say to oncologist to help my patient....also they infusion center nurses have upped from 275 to 300 blood going in ...in which that was tried 8 years ago..my patients body couldnt handle it.....please dr help me help my patient....shes weak... barely eats....ive got her on supplemental drinks...dr i just dont understand why giving my patient blood almost ready to expire...the more ive to take her for lab work then transfusions takes a toll on her health...please give me some advice...
Thanks a lot for your very elaborate explanation which really gave me a ray of hope. I am from Pakistan and my only daughter Hina lives in Houston Texas. Can an appointment be set with you to find out if my treatment is in the right direction. Dr Ayaz Mir of SHIFA International Hospital Islamabad is looking after my treatment. Stay Blessed always
Числовой ряд от этой болезни - норма лабораторных показателей крови 1489991 и еще один 1843214 - исцеление от системных заболеваний крови. Повторять просто числа в этих последовательностях. Через 10 дней постоянной работы анализы нормируются.
Проверю. Мне 12 июня плставлен диагноз - острые миелридный лейкоз. Присутствует анемия, низкие тромбоциты. По поведению сынов поняла, что сказали - умру вот вот. Прошла первый курс химии. Два двойных пепеливания крови. Два переливания концентрата тромбоцитов. Выписана домой. 22 го июля на вторую химию, если доживу. Сейчас собираюсь поехать в лес на дизеле.... Очень хочется грибы посмотреть. С тростью дойду до остановки и там все рядышком.... Вчера наткнулась на этот ваш каммент. Любопытно стало. А сколько ж повторять числовые ряды надо? Три раза в день? Один? Или это шутка такая? ))) Хотя.... кто ж отменял эффект плацебо, правда? .
@@ansakovith2011 Это не плацебо, никак нет! Есть даже в эзотерике правило - слово - это вещь. Подберите слово и получите вещь. Или наоборот - нужно чтобы вещь исчезла и для этого тоже надо подобрать слово. Вы свою болезнь создали словом или мыслью. И никак иначе - это закон. И теперь надо подобрать слово, чтобы диагноз исчез. Оцифровка этого "слова" И есть числовой ряд. Повторять постоянно - перерыв на сон и прием пищи. Был факт - за два месяца карцинома молочной железы исчезла. Рак легких с метастазами исчез, как и метастазы, за пол - года. Рак поджелудочной 4 стадии - исчез за 10 дней, посредством моей постоянной заботы. Неделю такой работы и можете сдать анализы - они конкретно изменятся в лучшую сторону. Числа просто повторяете в их последовательности. Лейкозы - числовой ряд в последовательности 5481347 Можно и желательно представлять свечение ряда серебристо - белым светом. Даже если диагноз будет снят, продолжать профилактику не менее двух месяцев.
@@ansakovith2011как ваши дела? У моего мужа похоже такое заболевание. Ставили миелофиброз, пил лекарство, не помогает. Гемоглобин падает, тромбоциты низкие. Кровотечение носом, боли в кишечнике и в костях. Бывает, что миелофиброз переходит в лейкоз. Пил препарат джакави, цена бешенная, правда мы его получали.
Полная дуристика, тем более принимая во внимание нынешний профессиализм и осведомленность врачей, можно поставить под сомнение этот диагноз. Но если уже поставили, то лечить будут до самой смерти.
Не лечится
Как протекает болезнь
How old were you when you first got AML?
у меня есть ци синтоми потому что я личу лекоз 😅
Igual uno muere mo tiene cura.
Combien de temps peut durer la rémission après la fin de traitement? Merci
☹️ P r o m o S M
У меня все симптомы есть
Yo hace 5 meses o más que estoy menstruando, perdí 5 kilos en menos de 15 días no tengo apetito tengo manchas q no desaparecen al presionarlas y cansancio el médico no me encontró nada dice q es normal pero me siento fatal
Todos los tratamientos mencionados tal vez el 03 % sea efectivo. Las diferentes leucemias son muy complicadas y letales. Es casi un milagro poder recuperarse
My husband relapsed 6 months after bone marrow transplant. I understand the fear and all the other emotions that go along with it. Wishing you all the best!
Desde siempre has existido un Doctor por excelencia gue cura todas enfermedades nuestro senor Jesucristo es la respuesta el sigue sanando fe en el y Busguelos de todo corazon para gue el no libres de todo mal
i go in ,for my bone marrow transplant , 28th martch 2023 , hopping all gos all well ?
i am going in to glasgow end of the mouth for a stem cel bone graft , so whish me well ,and hope all gos ok ?
/🎉 /iam going in for a trasplant ,this march but not no other people ,i no evry one is difrent ?
🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰
Como que dificultad para hablar?
A mi hace tres semanas me salió un ganglio inflamado bastante pequeño y no me da ninguna molestia (la mayoría de mi familiares han tenido ganglios inflamados durante años) y justo antes de ayer me salió un poco de sangre por la nariz y desde ese día al tocarme ese lado de la nariz o al llorar y salirme mocos me sale poquita sangre:( estoy muy preocupada por si las dos cosas están relacionadas, aunque no presento ningún síntoma lo pasa fatal ya que soy súper hipocondriaca
Al final que era?
Это удивительно. Не первый раз, рассматриваю симптомы той или иной болезни. И понимаю, что нет симптомов определенной болезни. Просто нет! Любая болезнь может включать в себя эти симптомы. Вот почему сами врачи по симптомам ,часто не определяют, или определяю поздно болезнь. Ужас какойто
Плохо учились, покупая диплом. Плюс каждая болезнь проявляется и мутирует по своему и в каждом организме все индивидуально