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Update on my MK-3475 Pembro Trial

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

  • Post
    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

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  • Replies
      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

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      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

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      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

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      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/

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      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/

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      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/

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      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

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      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

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      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

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