Disappointed with scan results
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Disappointed with scan results

› Forums › General Melanoma Community › Disappointed with scan results

  • Post
    • July 21, 2017 at 12:36 pm
    rabbits68
    Participant
    I went up to NYC to get me third infusion of the trial drug and was told my scan showed too much progression for me to continue. I also have a spine met that is becoming a problem and my pain level has increased. Proposal is to either radiate or try MEK combo again with Phenformin which is a clinical trial drug. I had a good run on the MEK for 18 months. Has anyone out there had a second run on this drug and been successful? I have chosen to try this route before more radiation. We should know fairly quickly if the drugs are working. Thank you for your input.
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  • Replies
      • July 21, 2017 at 5:35 pm
      sister of patient
      Participant

      Hi Lisa – that is a blow eh, so sorry to hear it!! I've often thought the Mek combo was like "magic" – made tumours just disappear, so I sincerely hope that it works for you again.

      I think there are a couple of people on here that are receiving Mek drugs concurrently with immunotherapy, so maybe that is an option that your docs will consider too.

      Regarding radiation, I can understand your reluctance but my sister had it as a palliative treatment only for pain from spinal mets and it was very effective for that. Though we didn't understand it at the time, that radioncologist also suggested that she could get an abscopal effect from it too once treatment kicked in (that was Taf/Mek to start). If the pain gets to be too much, you might want to consider it.

      I wish the very best outcome for you!! Take care!

      Barb

        • July 21, 2017 at 11:13 pm
        rabbits68
        Participant
        Thank you Barb, I will keep radiation option in my back pocket. I don’t think they will do in along with a trial otherwise I would choose both. I am hoping for the magic of MEK to begin. I will start meds on Wed so I am excited to get going. I appreciate your kind concern.
        • July 21, 2017 at 11:13 pm
        rabbits68
        Participant
        Thank you Barb, I will keep radiation option in my back pocket. I don’t think they will do in along with a trial otherwise I would choose both. I am hoping for the magic of MEK to begin. I will start meds on Wed so I am excited to get going. I appreciate your kind concern.
      • July 21, 2017 at 11:28 pm
      Cindyco
      Participant

      Hi Lisa, So sorry to hear the news.  I'll pray that doing MEK again will be successful for you. 

        • July 22, 2017 at 1:27 pm
        rabbits68
        Participant
        I am always thankful for prayer. I believe that is what gives us strength for each day. Thank you!
      • July 22, 2017 at 2:18 am
      Bubbles
      Participant

      Sorry for the poor results, Lisa.  Here is a post with several links within, to info re phenformin in melanoma:

      https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/phenformin-improves-activity-of-anti-pd.html  

      Here is a post addressing response to BRAF/MEK after having been treated with them before:

      https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/brafmek-rechallenge-in-folks-who-have.html  

      Hope that offers a bit of help. Sorry you are having to face yet another hurdle.  Hang in there. Yours, celeste

        • July 22, 2017 at 1:23 pm
        rabbits68
        Participant
        Celeste, these are both very encouraging. Thank you. I am excited about the 40 percent who reached stable disease with a second MEK run. Also it was a relief to read the side effects we’re minimal, I had very little the first time around.
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