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Treatment Options

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    • May 13, 2018 at 9:12 pm
    kentuckycat
    Participant

      Happy Mother's Day to all the mothers out there!

      I am looking for opinions on treatment options and questions I should ask my oncologist before setting up a plan.  I was diagnosed stage 3C in 2013.  Was in a trial for ipi vs inteferon and got the ipi arm.  Completed the trial of 1 year of ipi at 3mg and then had intransit mets.  Surgically remved the mets and did watch and wait until 2016 got more intransit mets.  Started Keytruda and met kept growing so had it surgically removed, but continued Keytruda.  Had a total of 14 Keytruda infusions and developed severe knee swelling and stiffness as well as high liver counts so discontinued Keytruda and took steroids.  Have been stable since the surgery about 20 months ago.  Have not had any treatment for a year and been off steroids for 5 months.  

      My latest scan showed an increase in the size of a lymph node in my abdomen from about 7mm to 21mm.  I will be getting it biopsied, but my oncologist already has me set up to meet with a surgeon as he is pretty sure this is a recurrence.  His initial thinking is surgically remove the lymph node and then start nivo.  The last tumor tested was braf positive.  My first question is assuming a positive node, should I have surgery or leave it in and see if treatment with shrink it?  I do think I likely need systemic treatment again, but which option? Should I get targeted treatment, go back on a pd-1 or go aggressive with ipi/nivo?  I am also currently researching clinical trials.  Any other thoughts?  Thanks in advance.    

       

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        • May 14, 2018 at 7:38 pm
        MichelleRHG
        Participant
          Hey there. I’m from Kentucky, too! I get my infusions at home but travel to MDAnderson for scans, surgeries and treatment plan. If you undergo surgery I hope you have a melanoma surgeon. (I learned a little too late)The one at home claimed he was a “melanoma doctor” but he was a general surgeon who saw all the melanoma that came through their large practice of several physicians. Huge difference. To your question, I have never done watch and wait or been advised to. But my recurrences show up 1 node at a time…easy to remove and continue with infusions. I recently moved from stage 3 to 4. I have had a total of 58 nodes removed from right groin, pelvis and chest. Who’s to say if it has been helpful or slowed progression? I’m still of the firm belief FOR ME that the best thing is to cut it out. Hopefully your doctors are specialists and can guide you. Good luck.
            • May 14, 2018 at 9:28 pm
            kentuckycat
            Participant

              Hi Michelle!  Thanks for the response.  Sorry for all you are going through as recurrences are no fun.  I am going to to the Brown Cancer Center in Louisville.  They have melanoma specialists and the surgeons are part of the cancer center.  I appreciate your strategy of cutting out what you can.  That is certainly where my oncologist is leaning.  This node is fairly deep in the abdomen so I am leaning toward no surgery for now, but restarting treatment probably of Keytruda and hoping the node shrinks.  If it continues to grow I would have surgery at that point in time.  I am not sure if there is data regarding eaither approach.  I likely will get 2 doctors opinions.  Thanks again for the response and I wish you well.  

              • May 14, 2018 at 9:57 pm
              MichelleRHG
              Participant
                Sounds good. Hopefully the immunotherapy will kill the tumor and you can avoid surgery!
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