The State of the RARE Registry
46:11
Mohs Surgery for Melanoma In Situ
1:25
The Melanoma Staging System
1:02
Жыл бұрын
What is Uveal Melanoma?
0:55
Жыл бұрын
What is Mucosal Melanoma?
0:41
Жыл бұрын
What is Acral Melanoma?
0:29
Жыл бұрын
RARE Registry Update: August 2023
30:58
Пікірлер
@rightthinking2087
@rightthinking2087 4 күн бұрын
Do you know any treatment for this?
@ScottPalmer-mp1we
@ScottPalmer-mp1we 17 күн бұрын
Although the information that the presenter gives is educational, I would suggest avoiding such silly anti-intellectual colloquialisms like "coo-coo crazy stuff". Such a statement sounds juvenile.
@loyolaschool
@loyolaschool 2 ай бұрын
Wow someone actually mentioned Dr. Foley. Nice
@user-cm7rn9hd6f
@user-cm7rn9hd6f 3 ай бұрын
Only 3%....😢
@cindyalovett710
@cindyalovett710 3 ай бұрын
I had radiation for a 27mm mucosal Melanoma lesion behind my right eye in 2006 and it actually spread to my mucosal lining of my left breast in 2019. I don't even want to be checked anymore. I'm so tired of just feeling like I am waiting to hear it again 🤦‍♀️
@tyl8ter
@tyl8ter 5 ай бұрын
Once you showed all the big pharma logos...I am out
@HanLaoBan
@HanLaoBan 6 ай бұрын
You are a great teacher!
@pamelabrowning7761
@pamelabrowning7761 6 ай бұрын
I have had cancer removed from my nose and it has came back worse now in the same place that they removed it from my nose and I have Red spots all on My back what should I do
@BrewtalBoyz
@BrewtalBoyz 8 ай бұрын
My journey started at Stage 3B, surgery and lymph node removal followed by Ipi 3x before extreme reaction. Scans clear for 3 years, nodule on lung removed - Stage 4. Treated with Pembro. Clear for 3 years until Dec 2023 - numerous lesions on liver and lungs. Being treated with Opduolag. This time I'm feeling most 'mortal'. I am humbled and grateful to be living in a time when so much emphasis is being place on Melanoma. I remain optimistic. Never give up...keep pushing - YOU are you're own advocate.
@thewordsmith5440
@thewordsmith5440 6 ай бұрын
Have you tried turkey tail mushroom or dandelion root tincture?
@Anjali-kk3vh
@Anjali-kk3vh 9 ай бұрын
I have all the symptoms of mucosal melanoma and I am very scared😣
@Rust-beam
@Rust-beam 3 ай бұрын
Go get it looked at there’s always a chance it ain’t
@avan7171
@avan7171 Жыл бұрын
I’m a 25 year USAF veteran. I was a Fighter Aircraft Crew Chief. Been retired since 2018. Was diagnosed with stage 2A melanoma this year. This last Feb the SecDef signed a letter that stated my career field and pilots/aircrew are drastically more at risk for multiple cancers including melanoma. The sad part is that no VA doc or base doc ever saw or recognized the “ugly duckling” on my back. It was the first visit to a VA community care chiropractor that said something. Thank god she did, because it saved my life. At no time during my service was skin cancer screened for or even briefed. My surgical oncologist asked me to please get the base on board with doing skin checks, as she has treated a ton of veterans.
@JonathanWirth-c3p
@JonathanWirth-c3p Жыл бұрын
Productions have a good day 😊
@petriciahice4838
@petriciahice4838 Жыл бұрын
TY for this panel info
@williambanzhof9739
@williambanzhof9739 Жыл бұрын
Thanks for presenting!
@williambanzhof9739
@williambanzhof9739 Жыл бұрын
EXCELLENT! Thanks for presenting!
@williambanzhof9739
@williambanzhof9739 Жыл бұрын
EXCELLENT! Thanks for presenting!
@williambanzhof9739
@williambanzhof9739 Жыл бұрын
EXCELLENT! Thanks for presenting!
@kerrylegge3197
@kerrylegge3197 Жыл бұрын
Thankyou so much for all the information in your work and study on trials and new discoveries. I can relate to this rare mutation situation so closely as my husband has Acral Melanoma which developed on the soul of his foot 4 yrs ago, 2 yrs later spread to lymph nodes in his groin, 9 of which were removed, he had immunotherapy which was ceased after 10 rounds due to kidney failure which was followed by 3 mths on steroids, about 8 mths later it developed in the Hilar lymph node on his lung, this was not able to be removed during surgery as it was a solid tumour and attached to his windpipe, he then had 6 wks of radiation we discovered he has the aggressive NRAS gene, we are now awaiting to have scans to see where he is at the moment. With no further treatment advised he is deciding if it is of any benefit to continue to be registered for a Phase 1 trial at 72 yrs of age with stage 4 lung cancer, or maybe it's best to enjoy the time he has left with his family who all love him so dearly. He is in constant pain and on Tramadol daily and unfortunately now antidepressants. Best wishes to all the people who are going through a similar journey, lets all hope a treatment is found soon that will help prolong the life of these unfortunate people with these rare mutations, cheers, Kerry.
@bellastar3923
@bellastar3923 Жыл бұрын
Volume is too low. Can’t hear it
@westfield90
@westfield90 Жыл бұрын
Sarah from the POG channel is a wonderful kind mother of two small children is just days from dying. Once it went to her brain it was seizures and a rapid decline. I truly pray we find a true breakthrough soon. Too many wonderful people are dying.
@westfield90
@westfield90 Жыл бұрын
Sad that Sarah from the POG family is on her final days. I don’t think much progress has been made. Too many dying still.
@jennistevenson796
@jennistevenson796 Жыл бұрын
Thank you so much for this information, particularly for talking about metastatic brain disease my son has been diagnosed with stage four melanoma with lung liver and brain metastases. Could you possibly answer what is the difference between asymptomatic and symptomatic brain, Mets and the prognosis and treatment
@MelanomaReAlli
@MelanomaReAlli Жыл бұрын
So sorry to hear of your son. Please let us know if we can be helpful during this difficult time. Asymptomatic brain metastases refer to the presence of cancerous tumors in the brain that do not cause noticeable symptoms. These metastases are often discovered incidentally during routine imaging tests, such as CT scans or MRI scans, performed for other reasons or as part of cancer staging. Unlike symptomatic brain metastases, individuals with asymptomatic brain metastases do not experience any specific signs or symptoms related to the presence of these tumors in the brain. However, it is important to note that even though they may be asymptomatic, these brain metastases can still have an impact on the individual's overall health and treatment plan. When asymptomatic brain metastases are detected, healthcare professionals will assess various factors, including the primary cancer type, the number and size of the metastases, and the individual's overall health, to determine the most appropriate course of action. Treatment options for asymptomatic brain metastases may include close monitoring with regular imaging, targeted therapy, radiation therapy, or a combination of these approaches. The goal is to prevent or delay the development of symptoms and manage the progression of the disease. Regular follow-up and communication with the healthcare team are crucial to ensure appropriate management and timely intervention if symptoms develop
@tarawhite8847
@tarawhite8847 Жыл бұрын
I have stage 3b melanoma and BRAF so it doesn't look good because I'm on targeted.
@davinastanton3865
@davinastanton3865 Жыл бұрын
Tara I hope you don't mind me commenting to you? My Melanoma was stage 2 when I got the host one removed on my back. So I didn't get any treatment for it. Unfortunately it mastsised ( spelt wrong) to my lymph nodes under my left arm. I went for surgery quickly and my surgeon removed 13 and 9 were positive. I was then 3d. I couldn't get Immunotherapy, for some reason. They gave me 2 types of tablets. I am so,so sorry I can't remember the names of them. I was on and off them because they made me so sick. But they kept tweaking the dose. My last MRI Scan, my Cancer went into remission. Covid has held things up so much. You are supposed to be seen for 3 monthly for 5 year's. This has never happened for me. I know how busy they are. But yes I am so afraid to. Please let me know how you are Tara. Take care. 💗🕊
@jjm4341
@jjm4341 11 ай бұрын
How are you doing, Tara? My husband has the same diagnosis with a rare BRAF mutation.
@tarawhite8847
@tarawhite8847 11 ай бұрын
I am doing ok. I had to stop the targeted therapy because I had too many side effects from the drugs they were giving me. I've been on immunotherapy for about 5 months now. They had to put a port in my chest because my veins were too small for the nurses to put a line in me. My skin on my face (I have seborrheic dermatitis) from before this happened and it's gone crazy. Very frustrating for me because it's so bad that I have to wear make up all the time even when I don't want to. My oncologist figures it's from the immunotherapy. I go once a month and the day before I get bloodwork done ( 7-10 vials). So far it hasn't spread to my lungs, I just had another CT scan and it's clear. They want to do an MRI on my brain in January. I feel fine but I've been coughing a lot, another side effect. My GP got me on a puffer so will see how that goes. All in all I feel ok. How is your husband doing?@@jjm4341
@gerryschweppe7014
@gerryschweppe7014 11 ай бұрын
Ivermectin look it up
@tarawhite8847
@tarawhite8847 11 ай бұрын
I have. Have you taken it yourself?@@gerryschweppe7014
@jyotirmayeemohanty7433
@jyotirmayeemohanty7433 Жыл бұрын
My husband has melignant melanoma at ano rectal, dr is suggesting surgical operation first line treatment but if we choose immunotherapy should be first and than other treatment along with it which one better for him, please suggest us.
@muditap
@muditap Жыл бұрын
Immunotherapy plus get into nutrition for helping the body heal
@monicayancey1316
@monicayancey1316 11 ай бұрын
Do surgery and immunotherapy
@evan9574
@evan9574 Жыл бұрын
Niceee! Crush your competition with smzeus!!!
@saboabbas123
@saboabbas123 Жыл бұрын
90-95% of melanoma patients recover in 2023. That is a miracle.
@MyMelanomaWorld
@MyMelanomaWorld Жыл бұрын
He helped save my life back in 2009-2010! I will forever be grateful for Dr Hamid!! I loved hearing more about the future of melanoma! He is such an incredible person. - Katie!
@CodyBarnett-r1t
@CodyBarnett-r1t Жыл бұрын
fascinating discussion - thank you for sharing!
@CodyBarnett-r1t
@CodyBarnett-r1t Жыл бұрын
Thank you for sharing this inspiring updates!
@davinastanton3865
@davinastanton3865 Жыл бұрын
Oh nooooooo I missed this.
@kimberlindy
@kimberlindy 2 жыл бұрын
This is great! Thanks!
@janekelly8708
@janekelly8708 2 жыл бұрын
Pituitary problems 6 months after off treatment, on cortisone. Started with stomach problems thought I had food poisoning really fast . One day fine that night not good. Interesting thing I noticed my allergies are back, had shots for allergies over two years they were gone now back. Happy to be alive so I can live with side effects
@queenofhearts1957
@queenofhearts1957 2 жыл бұрын
Hi! I have story as well. I'm a survivor of skin melanoma on my stomach. I was 23 yrs of age, and I will be 65 yrs this August. I would love to reach out to people going thru this scary time in their life. Back then we didn't even know what melanoma was. I don't think I ever saw an oncologist after diagnosis, just a surgeon. My dermatologist new immediately what it was. I asked those same questions.."Why me" and "How did this happen, I'm so young". I had a good portion of my stomach cut, considering the mole was super tiny. I go every 6 - 12 months to have my skin checked. And yes I too have run into some dermatologists that aren't thorough at all, so I advocate, for a different dermatologist. Please contact me. That "what if fear" still haunts me to this day. Deborah
@clb8277
@clb8277 2 жыл бұрын
Very informative panel with "real life" experiences, approaches, suggestions highlighted. Excellent Q&A concerning how to get voice of the patients to cancer reseachers and health providers.
@sandracricca1280
@sandracricca1280 2 жыл бұрын
⁹k
@drehighaloa8697
@drehighaloa8697 2 жыл бұрын
I'm Dr Ehighaloa, i cure all stds, sti ,hpv and many more I also specialized on any spiritual problems
@kathleenriggs8757
@kathleenriggs8757 2 жыл бұрын
😻THANK YOU 🇦🇺
@sgtrock2821
@sgtrock2821 2 жыл бұрын
Praying for all of you...
@girlwonder6
@girlwonder6 2 жыл бұрын
My experience.....Exposure to Contaminated Drinking Water (possibly Arsenic) in the US Army: Also, See the countries of India, Bangladesh and many African countries! Twenty yrs after US military service I developed spots on my feet and hands. Unfortunately, I have spent the last 28 years trying to get doctors to take these spots seriously. Many have implied that the spots are "common" among dark complexioned people. As I researched this topic and discovered the contaminated drinking water angle (Arsenicosis) I had both VA doctors and a private dermatologist blow it off as being of no consequences Just this year, I have submitted a VA disability claims which includes a wide array of skin conditions. Suddenly now with more-and-more military veterans developing cancer the VA is supposedly investigating trying to determine the cause of it all. Is there any mystery that we have been exposed to dangerous Chemicals of all sorts? And, whether it's the US military or country with high populations of people of color (brown and black). ....WHY ISN'T MORE BEING SAID ABOUT CONTAMINATED DRINKING WATER?? Now comes the bad news........a few days go I began to notice that I now have dark longitudinal bands which are now developing on a thumb, as well as, a big toe. Although, they haven't turned black yet to seems they could easily do so.
@knowone-sts2263
@knowone-sts2263 3 жыл бұрын
I like to smack my lips also. It makes me feel important.
@johndouh3717
@johndouh3717 3 жыл бұрын
Thank you very much
@ianp.7536
@ianp.7536 3 жыл бұрын
Very helpful-thanks.
@luckypounds7832
@luckypounds7832 3 жыл бұрын
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@bibinkanjirathingal
@bibinkanjirathingal 3 жыл бұрын
These kind of videos are very helpful for understanding the basics .Please do more videos like this
@bibinkanjirathingal
@bibinkanjirathingal 3 жыл бұрын
Thanks for the video.
@karenrae3
@karenrae3 4 жыл бұрын
My husband was recently diagnosed with stage 3c melanoma. Immunotherapy is the plan for the next year. Thank you for giving us hope.
@richardwebb2348
@richardwebb2348 4 жыл бұрын
Trump's puppet. Would a real doctor accept the position of Surgeon General in a willfully ignorant Trump Administration - he (she) would have to deny both science and modern medical treatment to be an acceptable choice. Despicable. Geriatric and morbidly obese, Trump is at great risk of infection with Coronavirus if he continues to attend campaign rallies and have personal contact with his cult followers who think handwashing and other precautions are not necessary as the virus is not real; the Italian government is apparently unaware of the hoax!
@takeoverusa
@takeoverusa 4 жыл бұрын
We gonna be Aright. Peace to my Asiatic Indigenous Moorish American Leader. The Restoring of the Land……. Love 2 All
@heather4145
@heather4145 5 жыл бұрын
This man made the whole world as I know it spin on its axis. He was brave and present and fortuitous enough to stand up and speak for the importance of the researchers, physicians, nurses, and caregivers that kept him alive well past when the cancer should have taken him, over and over again. He was proof of the worthiness of the pursuit. He is proof of the endlessness of my love and admiration. He can send a laugh through any crowd. Hearing his voice, now silenced, can send me straight to my knees every time. He succumbed to recurrent malignant melanoma on May 25th, 2018, after twelve years of surviving a six month prognosis. I bore the extraordinary privilege of being by his side all through the end. He died. He was the poster boy of a new therapy truly working (and it did!), but we know all too well now that those therapies very rarely last a lifetime as we would like to define it. The scientists aren't resting. The labs are in full tilt. The clinical trials need participants (--if you're reading this, and this could be you, JOIN ONE!). Every day, we are given new reasons to hope. Every day, people who are hit with the same diagnosis Rusty received in 2006 are being told that their chance of survival is FAR better than his was. Every day, our new reasons to hope are being earned by researchers, grant writers, funding organizations, pharmaceutical companies, patient advocates, and tireless physicians, PA's, and nurses the world over. Please give what you can, how you can. And take hope as often as possible. I love you, Rusty.
@audrineeyjohnson6016
@audrineeyjohnson6016 5 жыл бұрын
These doctors are doing nothing but beating around the bush. You can’t really find a lot on the internet about immunotherapy. Does it cure cancer?
@grandmainerie
@grandmainerie 5 жыл бұрын
They can't tell yet because the therapy is too new to have long-term statistics to tell what percentage of recipients are still alive years after treatment. They do know that not everybody responds to it, so it is definitely not a cure-all.