MRF-Logo2019-Horizontal-RGB
Update on my MK-3475 Pembro Trial
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.

Update on my MK-3475 Pembro Trial

› Forums › General Melanoma Community › Update on my MK-3475 Pembro Trial

  • Post
    • October 10, 2014 at 2:46 pm
    sweetaugust
    Participant

      Hi guys,

      I had treatment on Wednesday and said I would give an update after….as I went into it wondering if anything was going to change for my treatment plan now that Pembro/Keytruda/MK-3475 has been approved by the FDA.  And no, no change for me.  I am still on Pembro for good…with no end date.  And as of now they have no plans to change my dosage amount or 3 week intervals of infusion. 

      My question has always been how much is too much and how long is too long to be on the drug.  I've always had it in my mind that at the 2 year mark (which will be in a couple weeks) I would come off the drug and see how I did without it.  My doctors said that they don't really have enough data on patients coming off of Pembro, as most are still on it.  They did mention that a few of the patients that have come off of the Bristol Myers PD1 treatment had their cancer grow back, but then when those patients went back on the drug, the cancer faded away again.  So they are seeing that staying on the PD1 drugs is a good thing.

      So I guess the best thing for me to do is to just keep at it…and appreciate that I still feel great everyday. 

      How about any others out there on the PD1's.  How long are you scheduled to be on it for?  Are any of you scheduled to come off of it or are you all no-end-date like me?

      Thank you and all my best, Laurie

    Viewing 8 reply threads
    • Replies
        • October 10, 2014 at 6:18 pm
        BrianP
        Participant

          Thanks Laurie!

          I'll be interested to see how others respond to your question.  I have to admit I'm kinda surprised by the answer.  I was hoping that our immune system was taking notes and learning how to take care of things on its own.  I wonder if the patients who had melanoma grow back were those that had reached stable disease or if some were actually NED and the melanoma came back. 

          Brian

          • October 10, 2014 at 6:18 pm
          BrianP
          Participant

            Thanks Laurie!

            I'll be interested to see how others respond to your question.  I have to admit I'm kinda surprised by the answer.  I was hoping that our immune system was taking notes and learning how to take care of things on its own.  I wonder if the patients who had melanoma grow back were those that had reached stable disease or if some were actually NED and the melanoma came back. 

            Brian

            • October 10, 2014 at 6:18 pm
            BrianP
            Participant

              Thanks Laurie!

              I'll be interested to see how others respond to your question.  I have to admit I'm kinda surprised by the answer.  I was hoping that our immune system was taking notes and learning how to take care of things on its own.  I wonder if the patients who had melanoma grow back were those that had reached stable disease or if some were actually NED and the melanoma came back. 

              Brian

              • October 10, 2014 at 9:07 pm
              BrianP
              Participant

                Had this forwarded to me today from a good friend.  Very small study with only one of the three patients being melanoma but it seems to confirm what your doctors told you about good responses with reinduction of anti-PD1.

                http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548952/

                • October 10, 2014 at 9:07 pm
                BrianP
                Participant

                  Had this forwarded to me today from a good friend.  Very small study with only one of the three patients being melanoma but it seems to confirm what your doctors told you about good responses with reinduction of anti-PD1.

                  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548952/

                  • October 10, 2014 at 9:07 pm
                  BrianP
                  Participant

                    Had this forwarded to me today from a good friend.  Very small study with only one of the three patients being melanoma but it seems to confirm what your doctors told you about good responses with reinduction of anti-PD1.

                    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548952/

                    • October 10, 2014 at 10:17 pm
                    Bubbles
                    Participant

                      I took Nivo for 2 1/2 years….as was/is the protocol for all the other folks on my trial. My last dose was 15 months ago and I remain NED. The folks at Moffitt also report that some folks who relapsed after Nivo completion were re-inducted and did well but I do not know the numbers. Most at Moffitt seem to think that continuing indefinitely as in the Keytruda trials (and they have these trials as well) is not necessary. In fact, they don't think that I needed to take Nivo as long as I and my other ratties did. But…until more ratties demonstrate our results…it is all just educated guesses!  I certainly wish you my best! Celeste

                      • October 10, 2014 at 10:17 pm
                      Bubbles
                      Participant

                        I took Nivo for 2 1/2 years….as was/is the protocol for all the other folks on my trial. My last dose was 15 months ago and I remain NED. The folks at Moffitt also report that some folks who relapsed after Nivo completion were re-inducted and did well but I do not know the numbers. Most at Moffitt seem to think that continuing indefinitely as in the Keytruda trials (and they have these trials as well) is not necessary. In fact, they don't think that I needed to take Nivo as long as I and my other ratties did. But…until more ratties demonstrate our results…it is all just educated guesses!  I certainly wish you my best! Celeste

                        • October 10, 2014 at 10:17 pm
                        Bubbles
                        Participant

                          I took Nivo for 2 1/2 years….as was/is the protocol for all the other folks on my trial. My last dose was 15 months ago and I remain NED. The folks at Moffitt also report that some folks who relapsed after Nivo completion were re-inducted and did well but I do not know the numbers. Most at Moffitt seem to think that continuing indefinitely as in the Keytruda trials (and they have these trials as well) is not necessary. In fact, they don't think that I needed to take Nivo as long as I and my other ratties did. But…until more ratties demonstrate our results…it is all just educated guesses!  I certainly wish you my best! Celeste

                      Viewing 8 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