MRF-Logo2019-Horizontal-RGB
BTM
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

BTM

Forum Replies Created

Viewing 2 reply threads
  • Replies
      • February 21, 2022 at 5:28 pm
      BTM
      Participant
        Dear Mark, Celeste and Daisy,

        You guys are truly awesome! My appointed social worker at OHSU has been searching for months for someone for me to connect with to no avail. I wish I would have taken more of a lead and discovered the forum sooner. All good things in good time.

        Fortunately, I learned early on that you have to become the captain of your health care team, so you get the team you need in place to fill all of the pivotal roles. Getting connected with others in a similar position was what was missing!

        I’m super thankful for the guidance,
        suggestions, candor, reassurance and overall positively. It adds up and makes a substantive difference.

        Yours sincerely,

        Brian

        • February 20, 2022 at 8:48 pm
        BTM
        Participant
          Hey Daisy, I really appreciate your reaching out and sharing. I’m getting treatment at OHSU in Portland, OR. They made it sound like nivolumab was standard care, whereas the bempeg is a clinical drug trial that I understand has had some promising results.
          It’s great to hear Optivo/Yervoy are working well for you!

          I too sleep a lot on the couch these days. But I think the feeling of aging much faster than planned is one of the hardest parts, especially with young children. My biggest hope is to see them into adulthood.

          Sending you healing energy and positivity,

          Brian

          • February 20, 2022 at 11:51 am
          BTM
          Participant
            My treatment for stage 3c metastatic melanoma involves 17 infusions of Bempegaldesleukin (BEMPEG: NKTR-214) in combination with Nivolumab every three weeks. I just had treatment 9 of 17, so I’m now over half way through. The side effects have lessened over time but still involve major fatigue, nausea, dizziness, body aches,loss of appetite, insomnia, and occasionally significant joint pain. I’d love to connect with others going through similar treatments.
        Viewing 2 reply threads
        About the MRF Patient Forum

        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

        Popular Topics