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Subcutaneous no known primary (Stage 4a) Keytruda update

Forums Cutaneous Melanoma Community Subcutaneous no known primary (Stage 4a) Keytruda update

  • Post
    betsyl
    Participant

      Checking in after a long quiet time. Husband is getting his second-to-last Keytruda infusion today. Fingers crossed! He's been tired and sore lately, so we're hoping they take him off the drug.

      One mass still lights up when he get's scanned, but his last few scans show that it's not spreading. The hope is that it's stable and his immune system is going to be able to keep it under control.

      Of course, nothing is certain.

      The drug doesn't seem to be making much difference anymore, so there's no point in keeping him on it. At least this is what his doctor said during the last visit. We'll see if he changes his mind (again)!

      They will continue scanning and watching for changes. If it starts spreading, I'm not sure what they'll try.
      Not a good candidate for surgery because the tumor is near the spine.

      Living with this uncertainty has made us kind of numb. Surprising what is possible. Humans can get used to almost anything. I guess that's the human spirit.

      Warm wishes, strength, and spirit to all of you!

       

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        ed williams
        Participant

          Hi Betsyl, there is some evidence that shows that using targeted radiation therapy can be helpful with these stubborn tumors. Dr. Jason Luke in Chicago has been doing some interesting work in this field. I am sure anytime the tumor is near the spine that they might be cautious about using radiation!!! Best wishes!!!!Ed

          Bubbles
          Participant

            Hey Betsyl,

            Yes, it is very strange what we melanoma peeps and our dear ones can come to accept as "normal", isn't it???  I think Ed's point about radiation might be worth mentioning to your husband's docs…though you may have done this already and as Ed noted, depending on the tumor's location it may not be possible or recommended.  However, SRS and gamma knife type applications can make radiation incredibly focused and we know that radiation combined with immunotherapy can provide responses greater than either of those things when used alone.  Another rather out there idea, is whether or not injection of the tumor with an intralesional drug is possible?  I don't know if its location would allow for that, but many have attained success using these.  There are several – PV-10 and T-VEC being just a couple.  There's lots of info on my blog about them (just use the search bubble at the top left) if you are interested.  Kind of a long shot…but maybe worth asking about.

            Hang in there.  Yours, celeste

              betsyl
              Participant

                Ed and Bubbles,
                Thanks for your ideas. I will certainly ask about these things. It would be so nice to have NED status. 🙂
                Cheers,
                Betsy 

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