Home Forums Melanoma Diagnosis: Stage IV Check out our new patient video

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  • #22039
    Catherine Poole
    Keymaster

    Learn to be your own best advocate from some of the best! Our video captures the tips of 6 patients, (many who you know from here) that have successfully navigated this disease with our help, their caregivers and on their own. Just takes a few minutes to watch: http://melanomainternational.org/events-webinar/patient-experience-video/#.U6MIArGanz1

    Let us know what you think! Please share it with your friends, relatives, and neighbors and medical professionals.

    #64710
    odonoghue80
    Participant

    This webinar from Catherine and Dr. Infante was very informative. This gives patients some real insight on what options are out there for patients right now, and in the near future.

    The combination of drugs and immunotherapies seem very promising.

    I wonder, how these combination trials and drugs apply to patients after their trials?

    For example, if a patient enrolls in a trial that has ipilumumab and anti-pd1 combination, would that patient be excluded from one, or the other, on their own going forward?

    On a similar note, if a patient has already had ipi, BRAF drugs, and now anti-PD1 drugs, can the patient ever get treated on a combination trial including these drugs? (which is the case I find myself in now).

    I’m just curious can a patient, or will an oncologist ever re-visit these types of drugs in combination even though the patient have failed these drugs on their own?

    Thanks for posting this webinar, it was really explained well. I hope it was ok to sneak a few questions on this topic.

    -Shane

    #64711
    Catherine Poole
    Keymaster

    Ok, so you didn’t watch the patient video? To answer your question, the logic is usually if you didn’t respond to these drugs individually than in combination would not help you. The trials usually exclude prior therapy that they are using anyway. But the landscape is changing almost daily and if you have a creative and judicious oncologist, the sky is the limit!

    #64712
    odonoghue80
    Participant

    Of course I watched the video. I would never comment on a video without watching it.

    #64713
    Thandster
    Participant

    I think you watched a different video. I didn’t see any discussion of the latest options, combo therapies, Dr Infante or anything even close to that. Sounds like the one you saw was interesting, but it was not the patient video that was just posted.

    #64714
    msue5
    Participant

    The link also led me to Dr. Infante’s webinar but if you look on past webinars the new one is listed.

    Mary Sue

    #64715
    Catherine Poole
    Keymaster

    Sorry for any confusion, try this link: http://melanomainternational.org/events-webinar/patient-experience-video

    Learn from the best! These patients really tell a great story.

    #64716
    odonoghue80
    Participant

    Gotcha! Sorry about that – I was able to see the patient video today. Very nice.

    #64717
    debbieVA
    Participant

    Catherine/MIF,

    Excellent job on the video, it brought back many things and feelings I tried not to think about for a while now. Our Melanoma journeys are painful but sprinkled with blessings along the way. I remember vividly how you reached out to me in 2007, when after 4 rounds of IL-2 my oncologist threw in the towel and declared me a partial responder and not to continue as the treatment was too toxic and I very well may die. I calmly stepped back and found another Melanoma Specialist who agreed to continue the protocol. 2 more weeks of IL-2 for a total of 57 infusions….by the Grace of God, I’ve been NED since 2008.

    Navigating our Health Care System is a difficult task. It takes perseverance to find the specialists, the centers, the treatments, the trials, all while fighting for your life. It’s overwhelming. Thank you for all you do.

    God bless….

    Debbie Childers Hennessy

    Chesapeake, VA

    Stage 4 2006, Ned 2008

    #64718
    dhrahn
    Participant

    What a excellent video Catherine!! Thank you so much for all you do. I don’t say a lot on here but follow the threads frequently. Thank you again for wealth of information you are and staying on top of everything on this board amongst everything else you are involved in.

    #64719
    Catherine Poole
    Keymaster

    This video idea came to me when I was dealing with a health issue for my grandson. It was a scary time and the information about his disease is very scant. But I watched a video and there were kids and parents and they will living normal lives. It just made me feel reassured. And that’s what I hope we can do with this. I admire these patients so much and their tenacity to navigate and their willingness to share with all of you! I thank them for giving up a day to help us do this to help others!

    PS Debbie, so happy you are doing well!

    #64720
    Steven
    Participant

    Hi Catherine – great job on the video!

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