Confused and would like ideas
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Confused and would like ideas

› Forums › Cutaneous Melanoma Community › Confused and would like ideas

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    • May 4, 2019 at 2:23 am
    Centurion
    Participant

      initial melanoma mole nasty and colorful 2016 removed surgically, then lymph node biopsy postive, then lung nodules pos for melanoma, about to go trial meds then nodules stabilize, then yearly CT until 2018, all is good no treatment. Six months ago increased fatuige, downright dead tired. went to dr, after short process pep and ultrasound show large complex liver lesions and echogenic gallbladder both suspicious for mets.

      Anyone here similiar experience? currently waiting on another appt for opinion on ultrasound and what to do next if anything. Any thoughts would be appreciated, never thought I would be posting here. Had it licked.

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    • Replies
        • May 4, 2019 at 3:50 am
        Bubbles
        Participant

          Hi anon,

          Not entirely sure what "about to go trial meds then nodules stabilize….all is good no treatment" means.  In 2016 melanoma positive lung nodules (ie – a then Stage IV melanoma patient) would generally call for treatment with either immunotherapy or targeted therapy – both of which were/are FDA approved with no clinical trial needed in most countries.  But, at this point, it the lesions you are currently dealing with are indeed melanoma, I would certainly want to determine the BRAF status of those lesions since only BRAF positive lesions can be treated with targeted therapy.  I would also consider surgical removal of the gall bladder…it would be diagnostic, relatively minimal as far as surgery goes, and then if you opt for immunotherapy (probably the ipi/nivo combo) you would know that you are starting it with the lowest tumor burden you can.  Additionally, with mets (if that is what they are) in those locations, an MRI of the brain would probably be indicated as well.

          Here is a post I put together that reviews the current typical treatment for melanoma if you are interested:  

          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Hope that helps.  I wish you my best.  Celeste

            • May 4, 2019 at 7:49 am
            Centurion
            Participant

              Thank you so much for your reply, I thought I knew enough about all this, I guess not. The liver lesions are very large and were not there my last CT in 2018, so who knows if it is even melanoma or not. 

              One lousy roller coaster ride for sure.

            • May 4, 2019 at 8:03 pm
            Julie in SoCal
            Participant

              Hi Anon,

              The only other thing I would add to Celeste's reply above is to be sure you are seeing a melanoma specialist – not just an oncologist that treats melanoma.  Because the treatments are changing rapidly (and this is good) you want to be sure to be seen by someone who is able to keep up with the changes.  

              If you need help finding a mel specialist, just start a new thread with something like "looking for mel onc in _your location_".  If there's anyone near you they'll probably chime in.

              If you want to continue here, I would also suggest that you register and give yourself a user name.  Your user name can be anything and doesn't have to directly link to you, but having a name helps us know who were talking to and keep the conversation active and relevant.  Multiple Anons can make for a confusing dialogue.

              Shalom,

              Jule

                • May 4, 2019 at 8:04 pm
                Julie in SoCal
                Participant

                  Ha! I don't know how to spell my name: Julie!

                  • May 4, 2019 at 9:30 pm
                  Centurion
                  Participant

                    thank you for your reply and advice 

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