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NED for a year, now not NED
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NED for a year, now not NED

› Forums › General Melanoma Community › NED for a year, now not NED

  • Post
    • October 20, 2017 at 7:53 pm
    cheris
    Participant

      Hello, my fellow fighters,

      I had been NED for over a year after doing almost 2 years on Keytruda, but this week a small spot was found on my PET/CT scans.  It actually showed on the PET, but not on the CT.  My LDH is the highest it has ever been  My oncologist scheduled an MRI for 6 weeks to get more info.  I really wanted to start back on Ketruda immediately, but he said we need a better picture.  I always thought that I would be put on Keytruda again since it worked so well, but he also talked about adding some new drugs to it.  I feel a little lost because there is so little data on recurences.  Does anyone have any information, or anyone in the same boat?  Thanks,all.

      Cheris

       

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        • October 20, 2017 at 10:46 pm
        Bubbles
        Participant

          Hi Cheris,

          First and foremost, lots of "spots" show up on all sorts of scans that have absolutely nothing to do with melanoma.  So…scary as I know it is…you and your doc need to figure out if this is really melanoma or not.

          Secondly, and certainly sadly, with a response rate of only 40% when used as a single agent, there are many who never respond to anti-PD-1 (Keytruda or Opdivo) and many who progress after an initial response.  There is a great deal of data on that subject, just no perfect solution.  However, there is hope and there are options!!!  I will include some links to such data…though the vagaries of MPIP will allow me to put up only 2 at a time.  Here we go:

          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-other-therapies-after-failing.html  

          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-nivo-or-ipinivo-combo-in.html

          Continued below……

           

          • October 21, 2017 at 2:15 am
          BrianP
          Participant

            So sorry you are having this experience Cheris.  I agree with Celeste about this very well may not be melanoma.  Wanted to ask you about your LDH statement.  Do you mind posting your average LDH and what this latest reading is?  Reason I ask is that if you just have a small spot I think it is highly unlikely that it would be impacting your LDH significantly. Maybe others more trained like Celeste can comment.   LDH can fluctuate for many reasons.  May just be unfortunate timing with your uncomfirmed positive PET causing more anxieity.  

              • October 22, 2017 at 1:06 pm
              obtu.bt
              Participant
                Sorry for my ignorance but what is the relationship between LDH and melanoma?
                • October 22, 2017 at 8:34 pm
                Bubbles
                Participant

                  LDH is lactate dehydrogenase, an enzyme in cells that can be released…thereby increasing measureable levels…..when cells are damaged.  However, that "damage" may occur for many reasons:  a heart attack, cancer, infection, an injury or even just exercise.  However, an elevated LDH level is associated with a worse prognosis in melanoma, while a low LDH is associated with a better one.  Here are some related posts:   https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=LDH  

                  Hope that helps.  C

                  • October 23, 2017 at 3:55 pm
                  cheris
                  Participant

                    My LDH is about 156 usually, latest is 221.  Thank you for your information.  It's good to have others to talk to with melanoma.  Friends and family are great, but they really can't understand our situation. I always follow this forum, but haven't posted for awhile, mainlly because I can't remember my password, which is pretty nomal for me.  Celeste, I just want to commend you for taing the time to try to help everyone.  Blessings to everyone.

                    Cheris

                     

                    • October 24, 2017 at 9:09 pm
                    Spl25
                    Participant

                      Ive had my LDH bounce around quite a bit, althought the average is about 150 as well. Its been as high as 260 when I was feeling just fine (and responding). I think both of the pieces of "evidence of disease" youre talking about could easily be the result of an infection or some other anomaly. Try to keep calm, and I hope it turns out to be a nothingburger (they should know soon!). Even if its a somethingburger, theres some great data on people stopping Pd-1 and then resuming with success that was presented at this year's ASCO. 

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