Encouraging news
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.

Encouraging news

› Forums › General Melanoma Community › Encouraging news

  • Post
Viewing 1 reply thread
  • Replies
      • March 23, 2018 at 3:30 pm
      gopher38
      Participant

        That Checkpoint 915 is the one that I'm doing right now.  I had my first infusion yesterday.  It was either the 240 Nivo + Ipi, or the 480 Nivo (which would have been in 30minutes, by the way, because it was either 240 Nivo for 30min, 30 min wait, 30 min ipi; or 480 Nivo for 30 min, 30 min wait, 30 min placebo).  Funny how in a another post Bubbles talked about observation time for her after the infusion; for me, it was like: Unplug. OK, adios. You know the way out, right? Drive safe.

        At any rate … I think I have the placebo, because after all the worry that I had about the side effects of Ipi, I really didn't feel any effects from the treatment.  Maybe a little tingling at night, but that might have been in my head.   I felt completely normal this morning. I'm actually a little disappointed, because I'm taking this as an indication that my immune system isn't reacting to the treatment at all, which is obviously not the point.  I don't want to end up in the hospital, but I'm hoping I get a little nauseous after the next treatment.  Always something to worry about.

        I like that he actually put some kind of number on the term "likely reccurance".  Although I understand why they're hesitant to do that, a pessimistic-leaning person (guilty), is going to read "likely" as north of 90%.

          • March 23, 2018 at 4:43 pm
          bjeans
          Participant

            Interesting, gopher. My husband should begin what sounds like the same trial in two weeks. I don't see "Checkpoint 915," but the protocol number ends in 915 (CA209915).

            Arm A: nivo 240 every 2 weeks with ipi (1 mg/kg) added every 6th week for 49 weeks. Arm B: nivo 480 every 4 weeks. So every 2 weeks it's 30 minutes, except every 6th week starting with week #1 it's 30 minutes nivo + 30 minute break + 30 min ipi or placebo.

            We don't love the 480 nivo, based on another thread here. But my husband pointed out it's more likely people will post who have worse side effects than people who sail through, plus the poster universe isn't huge. (He's that calm guy.) And the ipi is 1/3 the standard dose, so you'd think/hope there would be fewer side effects. 

            We may be related. "Likely" for me is 90%. No, wait, 95%. Hang in there! (I'm going to channel Mr. T and his fierce support/tweets to the U.S. Curling Team.)

            And thanks NFNewf for the article! Is Dr. Weber the doctor Bubbles has quoted who counsels to be patient with the patient (benefits continuing after immunotherapy ends)? Maybe not?

            Beth

            • March 23, 2018 at 5:21 pm
            Bubbles
            Participant

              Yep!

            • March 23, 2018 at 5:06 pm
            Bubbles
            Participant

              Awesome share!  Thanks, NSNewf!  Love the Wizard Weber!!  c

          Viewing 1 reply thread
          • 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.