@ljohnston
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- June 23, 2021 at 4:00 pm
To advance the development of new diagnostic tools the MRF collaborates with multiple partners who are committed to ensuring the patient perspective is included in their mission against melanoma. As an organization, we share this commitment to making sure the patient voice is elevated during the development of prevention, diagnostic and treatment resources. -
- April 28, 2021 at 1:51 pm
Celeste and group-My apologies for the mis-information on the FDA approval. Before posting this today I made sure our team triple checked everything and communicated with our science teams.
I know this group looks for the correct information and I extend my apologies for any misdirection, especially since we strive to push out the most up to date info on all treatments, trials, etc.
Again, sincerest apologies.
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- April 27, 2021 at 10:12 am
All-Thank you for the threads on this post regarding the ask the expert series related to gene expression testing.
The MRF’s education program fields many questions about the testing and treatment pipeline which is why we engage with leaders in the field to offer more information that may be helpful to melanoma patients and caregivers evaluating their options. This is especially important when it comes to rare melanoma subtypes like OM, as the limited number of FDA-approved treatments puts a greater focus on tests and therapies currently in development in the emerging field of personalized medicine. As noted in the presentation the series was/is for educational purposes only and any medical questions should be directed to your healthcare professional for discussion.
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- April 27, 2021 at 10:10 am
All-First, thank you to all for your comments and concerns regarding the gene expression testing series.
The MRF’s education program fields many questions about the testing and treatment pipeline which is why we engage with leaders in the field to offer more information that may be helpful to melanoma patients and caregivers evaluating their options. This is especially important when it comes to rare melanoma subtypes like OM, as the limited number of FDA-approved treatments puts a greater focus on tests and therapies currently in development in the emerging field of personalized medicine. As noted in the presentations, the series was/is for educational purposes only and any medical questions should be directed to your healthcare professional for discussion.
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- April 19, 2021 at 11:33 am
HI Ed!This test has been approved by the FDA for both cutaneous and ocular melanoma to detect gene expressions.
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- August 21, 2015 at 6:50 pm
I can see the frustration with what you and your family have been dealing with the past few months. Thank you for reaching out to CURE OM and our ocular melanoma program. The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions. Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page. I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatmentIn addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system. http://www.melanoma.org/find-support/phone-buddyPhone Buddy | Melanoma Research FoundationThe MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.If you need any further assistance, please know that we are here and ready to support you. -
- August 21, 2015 at 6:50 pm
I can see the frustration with what you and your family have been dealing with the past few months. Thank you for reaching out to CURE OM and our ocular melanoma program. The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions. Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page. I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatmentIn addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system. http://www.melanoma.org/find-support/phone-buddyPhone Buddy | Melanoma Research FoundationThe MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.If you need any further assistance, please know that we are here and ready to support you. -
- August 21, 2015 at 6:50 pm
I can see the frustration with what you and your family have been dealing with the past few months. Thank you for reaching out to CURE OM and our ocular melanoma program. The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions. Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page. I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatmentIn addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system. http://www.melanoma.org/find-support/phone-buddyPhone Buddy | Melanoma Research FoundationThe MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.If you need any further assistance, please know that we are here and ready to support you. -
- April 20, 2021 at 10:25 am
Cindy- I’m so glad that you continued with the appointments and that it was caught! The test is not 100% accurate, as most tests aren’t unfortunately, I’m sure that the company tries to improve it on a regular basis. There are many OM patients that were diagnosed class 1 (lowest risk) and then like yourself metastasized. Based on the information that science has and the markers, that is how the test is used. Unfortunately, every person’s cancer journey is different. I am so glad that you are responding to Keytruda!
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