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Melanoma Patient Network Europe
Приєднався 25 лют 2014
The Melanoma Patient Network Europe is a new initiative to improve the situation of Melanoma patients in Europe.
We want to connect Melanoma patients and their advocates across Europe to find constructive solutions to the problems faced by our community.
To find out more, visit our website www.melanomapatientnetworkeu.org !
We want to connect Melanoma patients and their advocates across Europe to find constructive solutions to the problems faced by our community.
To find out more, visit our website www.melanomapatientnetworkeu.org !
Meet iToBoS Trilateral's Zita McCrea on Ethical AI
A talk for Patient Advocates on the elements of Ethical AI in the EU iToBoS project by WP Lead Trilateral Research.
Переглядів: 20
Відео
iToBoS@MPNE2023 Rafael Garcia
Переглядів 163Рік тому
MPNE was delighted to welcome its colleagues from the iToBoS project at its annual conference, MPNE2023: Rafael Garcia provides some personal backstory to the iToBoS (intelligent Total Body Scanner) project that he now coordinates. We are proud to be iToBoS project partners! iToBoS is a European projected and funded under the EU Horizon 2020 program. itobos.eu/
Liver-directed therapy for metastatic uveal Melanoma
Переглядів 1,2 тис.4 роки тому
Uveal Melanoma likes to metastasise the liver. In this video, Ioannis Karydis from the University of Southamptons explains how one can use the particular anatomy of the liver to treat liver metastases in Uveal Melanoma.
MPNCEE2018
Переглядів 2606 років тому
The only way to see our people live is through access to innovation and the latest research. See you in Bucharest! Melanoma in Central and Eastern Europe. MPNCEE2018
An ordinary extraordinary life. Kacie MPNE2017
Переглядів 6 тис.6 років тому
Having an ordinary life with Stage 4 Melanoma is rather extraordinary- and what an inspiring take on it! Kacie MPNE2017
Know your enemy and LIVE. Fredrik
Переглядів 5176 років тому
Listen to how Fredrik dealt with his Stage 4 Melanoma diagnosis and his advice. MPNE2017
3 months not worth it? Lucy MPNE2017
Переглядів 9626 років тому
How much you value your time very much depends on circumstances. Listen to Lucy about the value of time in Stage 4 Melanoma. MPNE2017
Iain
Переглядів 9377 років тому
Iain has Stage 4 Ocular Melanoma and talks about his diagnosis, the treatments he has had and how he lives with Melanoma.
MPNE2016 POWER to the patient
Переглядів 5647 років тому
POWER TO THE PATIENT. With great power comes great responsibility. Documentary of MPNE2016, the annual conference of the Melanoma Patient Network Europe www.melanomapatientnetworkeu.org/conference-2016.html
MPNErare2017
Переглядів 3047 років тому
Conference for rare (ocular, mucosal, acral) Melanomas. Join us 6-8th October in Leiden- the Netherlands! www.melanomapatientnetworkeu.org/mpnerare2017.html
Stage 4 Melanoma- and just married.
Переглядів 11 тис.7 років тому
There is more to life than a Melanoma diagnosis. New drugs bring real hope but a life worth living is more than just surviving. Listen to Jade about what TRULY matters when you get a Melanoma diagnosis- and just married, hoping to start a family.
Melanoma Survivors. Not Heroes.
Переглядів 9448 років тому
Melanoma patients are joining clinical trials to survive, not because they are heroes.
MPNE2015- the risk of NOT taking risks in Melanoma.
Переглядів 9759 років тому
The risk of NOT taking risks in Melanoma. Documentary of MPNE2015, the annual conference of the Melanoma Patient Network Europe, 24th- 26th April 2015 in Brussels.
'The Risk of not taking Risks in Melanoma'
Переглядів 2659 років тому
A Metastatic Melanoma diagnosis changes everything. In a disease without certain cure, the risk of new medicines suddenly dwarfs the risk of not acting- clashing with the risk perception of other stakeholders in the drug development process.
Patient on trial- what trial participation really is like
Переглядів 2,8 тис.9 років тому
A Melanoma patient describes her personal experience with trial participation and what randomisation to an inferior comparator is like- a must-watch for anyone concerned about patient participation in clinical trials and any trial designer.
MPNE 2014- The Melanoma trials we want!
Переглядів 2,5 тис.10 років тому
MPNE 2014- The Melanoma trials we want!
I hope you're doing well.
@8.50, The TWIT of a Dr, (& I bet he's MALE) says ONLY 'OLD' People get the disease MELANOMA ! He could not be more WRONG. I'm a Registered (Multi-Cert) Nursing-Sr, in Australia. I've worked for many yrs at The Cancer Clinic (Peter MacCallum ). This 'Dr' speaks tripe. We've had Pts as young as 8yrs old, with Melanoma. HINTS: If you live alone, get a friend to inspect your back, for moles/'funny-looking' lesions; AND ALL inspect the SOLES of your feet. We know never get sun directly on them, BUT they can still develop Melanoma-causing moles/lesions.
U are an interracial couple. Of course they would not give u and ur hubby the opportunity. Sad but its the harsh reality we live in!
I can guess why the Doctor "forgot". 🤬
First thing that crossed my mind too. I'm sure Dr "FORGOT"...🤔😒🙄
Stopping treatment for 3 months in order to access new sperm is contradictory to the patient's right to receive the most productive medical care under the guidelines provided in the Hippocratic Oath! And many doctors will tell you if you decide not to follow their best advice, then they can't help you and that you should seek out someone else. Seeing this as a "discriminatory" act IS falsely identifying circumstance.
No thanks to Socialised Medicine. It better not happen in the US, people would flip the hell out, no thank you to socialism.
Why these doctors said that Melanoma is usually happening in old people is false because Melanoma is not a respect or of age, anyone at any age can get it!!!
Usually , in North America women are asked if they want their eggs frozen and fertility clinics get involved if it's a young couple. She is correct one day more was not going to make a difference . They were a newly married . I don't think the physicians were thinking and if they were , they were thinking how is she young to look after a baby snd sick husband . The subject having children should have been discussed .
Ohhh god I’m so sad, I still sending love hug and kisses to you all 😢
I think it is a selfish act to conceive a child with sperm from a man with a history of cancer. You possibly create a life that is destined to suffer.
I don't believe that this is the case for melanoma. Also, a mixed-race kid would have less chance to develop melanoma, as it is 20 times more common in white people. Nevertheless, we white people, despite our more fragile skin, still make babies.
Many children are born with two parents who do not have cancer and suffer terribly through neglect, abuse or just through misfortune. This baby would only ever know love, how much they were wanted and what a precious gift he/she they are. Fact check on melanoma before making such ill informed judgements for that may be construed as ignorant.
Cancer doesn’t discriminate! It doesn’t matter who you marry anybody’s color of skin what color the skin is of the person with the sperm or the eggs it has no bearing on developing cancer! White people may be more susceptible to melon noma because of lighter skin, and they can see the cancer easier! Once you have cancer and it’s in your blood, it never goes away. It may lay dormant, called remission, but it’s still there, and always comes back. Somewhere down the line before you die! That is a fact. Period if you have cancer in your blood, there’s a likelihood of a child, having cancer since that child shares your blood in the womb or in the sperm. What are one of the things that cancer centers tell you? They tell you that if you have a parent that has cancer your chances of having cancer are extremely higher. The same goes if you have a sibling, a cousin and uncle, etc..
What an ignorant thing to say.
it’s not your decision to choose who does and doesn’t have children, and thank god for that.
It is terrible that the doctors did not suggest your husband preserves his sperm. My son, age 36has just been diagnosed stage 4 melanoma and he was asked if they wanted more children. As they have no plans for more children ( they fortunately have two girls) they declined . It is just an excuse to say it is a disease of old people and simply not true. A doctor should know this. It is a standard question to ask a patient when considering treatment. I am very sorry you had this experience and hopefully next year you can try for a baby xxxxx
In America it is not an "old people's" disease. Hmm. And this young woman is so well spoken. I am 36, live in the states and was just diagnosed with malignant melanoma. I have a great doctor. My baby is only 16 months old and makes me so joyful and super happy every moment. I get to be a stay-at-home mom. I'm enjoying every second of life just like I did before my diagnosis. I will say I used tanning beds as a tween and lived life in the sun as you should. I usually wore sunscreen. I have a degree in Medical Sociology so I will be the one to counsel patients and their families in situations like this...I want to be ultra sensitive and tactful, professional, and loving! I will say that life is painful for all at some point and we just do the best we can and do right by people. I give my son the best life and confident I will be cured of this before it reaches any lymph node. ❤
Yeah . They gotta head it off at the pass " Lymph " before it sets up . I am Stage 4 Melanoma and it went to three spots in my brain . Fortunately they have a machine " Truebeam " that disintegrates tumors but I am told they lurk . They also put my on immunotherapy and it seemingly worked for the rest of the body , But after 3 years of infusions they ceased because of side effects .My melanoma started in a very odd place , Under the thumbnail . Had to amputate the thumb. In all of my studies , Once it goes to the brain it's generally 3-4 months , I am at 40 months but getting weaker everyday . Just a droning nausea and body weakness . I am reminded by my oncologist a few times " Had it been a few years earlier , We wouldn't be having this conversation " . Supposedly immunotherapy was a game changer . Hope all goes well and you live a long happy fruitful life .
Merci Jade, j'espere que tout va bien pour vous et votre mari xxx
you stil here🙌
Prachtig levensverhaal van een zeer moedige vrouw, …. b
Strong women you are, Kacie. Good luck in your life.
Thank you to everyone who contributed to the conference and in particular, to this documentary. Risk looks very different depending on where you stand!
Lori is so brave, eloquent, composed and rational when the most controlled human would be screaming. Perfectly delivered. I hope the clinical trial machine listens x
Lori is my friend and the best melanoma patient advocate I know. She is a melanoma patient stage IV. If there is a way to help her don't hesitate to do it! Share or donate - melanoma has no mercy and gives time to no one! Melanoma killed my sister and I don't want to see people killed anymore. Fight Lori!www.youcaring.com/medical-fundraiser/help-lori-murdock-live/344548?fb_action_ids=10153898614024408&fb_action_types=og.comments
Here's the petition too : www.change.org/p/nhs-england-meet-excess-treatment-costs-for-clinical-trials?recruiter=65403466&
Lori has 12 days to get to start this rigorous last-chance treatment - It is utterly ridiculous that her access is being held up, firstly, the facilities and expertise for this TILs treatment (MaTILda) is all sitting ready and waiting for NHS funding and secondly, this treatment is in many cases cheaper than the current new therapies : this treatment represents value for money .. Please share/donate and also sign the petition - "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." (Margaret Mead) www.youcaring.com/medical-fundraiser/help-lori-murdock-live/344548?fb_action_ids=10206672713527501&fb_action_types=og.comments
Sign the petition to persuade NHS England to meet its obligation to fund Lori's treatment: www.change.org/p/nhs-england-meet-excess-treatment-costs-for-clinical-trials
First you are treated like this on a clinical trial and then you need to fundraise for your own treatment- what type of society do we actually live in? www.youcaring.com/medical-fundraiser/help-lori-murdock-live/344548?fb_action_ids=10206672713527501&fb_action_types=og.comments
Application to attend the conference has started www.surveymonkey.com/r/MPNE2015
Sending love. X
This situation is beyond ridiculous. Lori, thank you so much for sharing your experience.
Oh, Lori. What an eloquent recounting of what you have been through. In hopes of having your "voice heard" I have shared your story here: chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/01/a-beautiful-lady-with-eloquent-though.html Much love. c
A Melanoma patient describes her personal experience with trial participation and what randomisation to an inferior comparator is like- a must-watch for anyone concerned about patient participation in clinical trials and any trial designer.
The Melanoma trial of the future- the trials we want!