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Anyone have melanoma in the liver? What avenue are you taking?

Forums General Melanoma Community Anyone have melanoma in the liver? What avenue are you taking?

  • Post
    Newmanbell
    Participant

      I hope I am just jumping the gun here, but petscan showed a spot on the liver for my Stage 3b husband.  Dana Farber wants an MRI and we are meeting with them on November 14th.  From what I read, once it is in the liver the prognosis is bad.  Please, any success stories here?  I want to curl up and just cry all day under my desk…

       

      Donna

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    • Replies
        Bubbles
        Participant

          Sorry for your worry, Donna, though I understand.  Like many body parts in scans, odd bits and bobs can show up on the liver that turn out to be nothing to worry about!!  Hopefully, that will be the case for your husband as well.  However, while liver mets are certainly a beast, from the literature I have reviewed stereotactic ablative radiation therapy combined with immunotherapy is certainly what I would be asking the doc about.  I know there are those here who have benefitted from that or a similar procedure.  Hang in there.  Fingers crossed that it is a inconsequential ditzel!!!  yours, celeste

          geriakt
          Participant

            I was diagnosed 3B melanoma and also had a PET scan that showed a mess on my liver. My surgical Onc did not believe it to be cancer so he sent me for a MRI of my liver. MRI results were metastatic tumor on the liver. Then was sent for an ultra sound of the liver. Again results were not good. Then I had an ultra sound needle biopsy of the turmor on the liver. Results were benign and was thought to just be a mess of blood vessels. 

            PET scans provide many false positives so like me get a second and third opinion. My Dr would not give up on me and went to 5 different second opinions. 

            Tom 

              Newmanbell
              Participant

                Wow!!!!  Let's hope this is the case…. thank you so much for replying.  Keep these stories coming.

              JuTMSY4
              Participant

                Every case is different. 

                I was DXed stage II in June of 2014, DXed Stage III in August of 2014 and DXed Stage IV in December of 2014 with mets throughout my bone strucutre (mostly chest), a few additional nodes and potentially my liver.  Started Ipi in about january of 2015 and Keytruda in April of 2015 (unclear if I failed ipi or my tumors were inflamed).

                I'm still here, so something is working.  DXed as probably NEAD in December of 2015.  My last several scans (bone scans, PET scans and CT Scans) have turned from stable liver mets to possibly not being liver mets at all (fatty sparing?).  We don't know.  However, while some people have experienced stubborn liver mets, this are in such a state of flux now, that it's very difficult to predict.

                So:

                A) Could it be a false positive?  Yes.  Very hard to predict and I would defer to several sets of professional eyes.

                B) if it is a met, is it the end of the world?  No.  Immunotherapy is amazing and more stuff is coming.  It's a whole new world for Melanoma now.  

                Gene_S
                Participant

                  Hllo, My husband was Stage III and when he went to Stage IV he had mets in his liver, lungs and unresectable at the C! spine.  He had several mets in his liver.  He started Ipi 10 mg/kg and GMCSF in March of 2011. Became NED in July 2012 and has remained that way for over 5 years now.  The liver is also amazing as it can regenerate itself.  So it is not necessarily a doomsday news.

                  Keep your chin up and hope for the best.

                  Judy (loving wife of Gene NED for over 5 years)

                    Newmanbell
                    Participant

                      Thanks Judy… we are anxious for the MRI to see if it is anything.  He did do yervoy (3 out of 4 infusions), but had to stop due to toxicity.  I so love this man… and not liking this new journey we are on.

                      Toby0987
                      Participant

                        I’m 3b and my liver lights up in different spots every time I go in. I was nervous the first few times but my dr said in his experience the liver has lite up on almost every pet he has looked at for his cancer patients. I’ve been getting pets for the last 5 Yrs). I go to mayo in Rochester-dr Markovic 

                        Newmanbell
                        Participant

                          How do you like the team in Rochester?  We are in Syracuse and our doctor has us checking in at Dana Farber, which is quite a bit more of a distance.

                          Newmanbell
                          Participant

                            Oh, oops… that is Rochester Minnosota!  Duh… OK, Dana Farber is closer…:).

                          Mat
                          Participant

                            At S-IV diagnosis in 2013, I had a heavy and aggressive tumor burden, particularly in liver. My scans still show this side of 10 tumors in my liver (possibly dead tumor).  Don't believe what you hear about liver or brain mets (had those too).  The available treatments work on both.  Better to not have liver mets? Sure–also better to not have melanoma at all.

                              Bubbles
                              Participant

                                I'm pressing my "like" button!  LIKE!  LIKE!  LIKE!  LIKE!

                                Love ya, Mat!  c

                              GeoTony
                              Participant

                                Hi Donna

                                I've had liver/lung mets, half a dozen in each, since I moved up to stg IV, a year ago. They've shrunk slightly over the year, currently on the Nivo maintenance following 3 out of 4 Ipi/Nivo doses, missed one due to lung/skin issues. Onc is very much of the opinion that bloodwork looks good, I'm not losing weight, all other indicators are stable, so keep on taking the bug juice. My only issue is a couple of enlarged armpit lymph nodes that refuse to shrink, may try radiation to bring them into line later.

                                apart from melanoma, I'm the healthiest I've been in years

                                  Newmanbell
                                  Participant
                                    I so love all of you….

                                  Hi,

                                  I was diagnosed with stage IV and had mets everywhere except my bones (liver included).  I've had two ipi/nivo infusions and am now on nivo maintenance. It's been over a year and although the liver met is still there it is much smaller now and continues to shrink.  If it is a melanoma met there is hope.  It may be a battle but there is hope.  Good thoughts and wishes to you.

                                  Jennifer

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