MRF-Logo2019-Horizontal-RGB
The Plan
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.

The Plan

› Forums › General Melanoma Community › The Plan

  • Post
    • September 12, 2020 at 7:36 pm
    Julie in SoCal
    Participant
      Greetings! Melahomies!

      After talking with the Brain Trust at St. John’s, I have a plan! It is to 1) continue the ipi /nivo immunotherapy combo I’ve been on every other week and then 2) start chemo in the brain next week. The thinking is that the immunotherapy is slow, but it has worked in the past and hopefully this will keep the mets out of my lungs and other parts of my body. It can work in the brain (yes, please) but it is slow, and slow is not so good for the brain, so on Wed I’ll have a port put in my head and we’ll start chemo to the brain and spine. Oh and the port placement is an outpatient brain surgery (Yeeeha!)

      I’m slowly wrapping my head around this, and making changes to how I’ll live my life. I’ve put in for medical leave from my job (and I loved my job) but people and relationships are more important now.

      Just wanted to catch you all up.

      Shalom,
      Julie

    Viewing 5 reply threads
    • Replies
        • September 13, 2020 at 12:50 am
        gopher38
        Participant
          A port to the head? Can they download jijitsu at the same time as the chemo? How to pilot a B212 helicopter?
          Seriously, hope this works. Sounds like a good plan, and one that might have both good short- and long-term results. Definitely smart to quit the job.
          Best of luck. Will be rooting for you.
          • September 13, 2020 at 12:17 pm
          tedtell1
          Participant
            Dearest Julie;
            Glad you have a plan! Now lets have that plan be a winner. Hoping and praying for you. I love your attitude.
            Ted
            • September 13, 2020 at 4:03 pm
            mrbill16323
            Participant
              Thank you for sharing your story. Wishing for you the very best outcomes and the strength to persevere!!!!!!!!
              • September 13, 2020 at 5:27 pm
              Bubbles
              Participant
                Oh, Sweet Julie!!!

                Crazy as it is, sometimes getting a plan and wrapping your head around it is the hardest part! At least in some ways. I’m glad the brain trust brought it together for you. Sounds like a very reasonable plan to me. (Under these very unreasonable circumstances!!!!) Will continue to send you love and hugs every minute, with especially big ones on Wednesday. Sorry you are having to take a break from your job. It’s not easy to let go of things that are important to you. Hopefully, it will not be for long and being free of it for a minute will allow you to focus on your more immediate peeps and healing your dear, joyful self!!!

                All fingers and toes crossed for the best results with least misery possible!! much love, les

                • September 14, 2020 at 1:20 am
                Mark_DC
                Participant
                  Hi Julie,

                  I tried to post Saturday but failed – hope this time works.
                  Am glad you have a plan – I am no expert but it seems to make sense, to try both approaches as they complement each other and to fix the brain stuff.
                  I dont like the sound of “outpatient brain surgery” (!!) but you seem up for it!

                  You have a great attitude and I hope you will pull through this — good luck on Wednesday
                  Mark

                    • September 15, 2020 at 12:58 am
                    slholmdahl
                    Participant
                      Julie,
                      You have helped me many times by responding to a comment or question. I am very glad you have a plan and I wish you well! Your spirit is strong and you are a shining light for those of here on this board. Keep us posted on your progress.

                      Peace!

                    • September 17, 2020 at 8:43 pm
                    jbronicki
                    Participant
                      Oh Julie, so sorry I’m late on replying, but it hurts to know you have to go through this. And I never doubt that you have a “Plan”, you and your team always have “the plan”! You and your team are awesome. I’m so sorry to hear about having to back away from the job, I know how much you love your work and that must be a real heartbreaker for you, but per usual you understand the really important things in life like family and friends. I’m hoping you get back to that work though eventually, we need you here and your work needs you. I love qualitative research, it is so meaningful. I’m hoping the chemo works quickly in the brain and spine and primes the way for immunotherapy to bring out the big guns and get rid of this. Many hugs! Will keep all thoughts and prayers focused for you!
                  Viewing 5 reply threads
                  • You must be logged in to reply to this topic.
                  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