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New here, husband stage IV
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New here, husband stage IV

› Forums › Cutaneous Melanoma Community › New here, husband stage IV

  • Post
    • August 11, 2011 at 11:15 pm
    PlantLady
    Participant

      Hi all,

      I have benefited from reading many posts here over the past couple of months, and I have found inspiration and encouragement.

      My husband Ron was diagnosed in April with stage IV melanoma with mets in the lung, 2 ribs, and adrenal.  Since the only sign of a previous mole had been one that was "in situ" and removed in 2007, it was totally unexpected.  It was found during an XRay of the lung for another diagnostic purpose.  He was not symtomatic.  There is no outward sign of melanoma.

      Hi all,

      I have benefited from reading many posts here over the past couple of months, and I have found inspiration and encouragement.

      My husband Ron was diagnosed in April with stage IV melanoma with mets in the lung, 2 ribs, and adrenal.  Since the only sign of a previous mole had been one that was "in situ" and removed in 2007, it was totally unexpected.  It was found during an XRay of the lung for another diagnostic purpose.  He was not symtomatic.  There is no outward sign of melanoma.

      He is retired, age 71.  He's previously taken no drugs, has excellent bloodwork, and was very hale and hearty looking.  A picture of health, well, except for the Cancer!

      Ron was referred to Dr. Lao at the University of Michigan for treatment.  He was started on Ipilimumab.  He had 2 treatments of Ipi, and started having diarrhea, fatigue and loss of appetite, loss of voice, and rapid weight loss (8 lbs in 2 wks).  His doctor put him on steroids (oral tabs, dexamethasone), plus Imodium, plus Prevacid to protect the stomach. 

      One week after that, he still had diarrhea 6 times or so per day, PLUS now developed DROP FOOT!

      The doctor took him off treatment.  We were pretty upset.  The doctor said maybe he can go back on it sometime down the road.  He's now down a total of about 30 pounds.  He looks skeletal, has a tough time walking because of the foot thing, and has a hoarse raspy voice (the ENT this week scoped him and said no tumors there, just muscle weakness). His skin just hangs, no muscle tone. Diarrhea continues. He continues to work out a bit, and to use the recumbant bike, but also sleeps a lot and is tired.  His appetite is huge, because ot the steroids, but it makes no difference in the weight.

      He was supposed to be done with all 4 doses the end of Aug and scan the end of Sept., but instead he will be re-scanned the 21st and have the report with the doctor the 24th. 

      Sorry this is so long, but I just wanted to share what the Ipi treatment has been like.  2 doses down, maybe more to go, maybe not.

      Thanks for being there.

      CJ

    Viewing 3 reply threads
    • Replies
        • August 11, 2011 at 11:50 pm
        MichaelFL
        Participant

          Hi,

          Have you discussed the next plan of action? Has he also been checked for the BRAF mutation?

          As you mention drop foot, when he is to be rescanned, you may wish to have a scan of his brain as well.

          Good luck.

            • August 12, 2011 at 11:41 am
            PlantLady
            Participant

              We don't know the next plan of action.  The doctor doesn't want to wait till Sept for the PET whole body scan, but, rather do it a month early, so that he can make the next plan.  We see him Aug 24th.

              My husband is BRAF NEG, unfortunately. 

              He lost another 6 lbs. this week and will call the doctor this morning to see if anything can be done about the wasting.

              The upcoming PET scan will include the brain.   The last time the brain scan was an MRI with contrast.  This doctor includes the brain in the PET whole body, rather than ordering a separate MRI for the brain.  I don't know why the referring oncologist preferred a different scan for the brain than his current doctor.

              Waiting for the Scan Date is nerve wracking.

              • August 14, 2011 at 1:17 pm
              Gene_S
              Participant

                Hello,

                My husband had pet scans done but his Dr. said they don't show the brain as it is always active so he has MRI's done for the brain purposes.  Just a little info about our Dr.'s procedures.

                Judy wife of Gene_S Stage IV

                • August 14, 2011 at 5:52 pm
                PlantLady
                Participant

                  That's what I thought I'd understood our first oncologist to say.  This oncologist (melanoma specialist) isn't ordering MRI for the brain, but maybe we should question that.  It sure wouldn't be the first time we've questioned him!

                  CJ, wife of Ron Stage IV

                  • August 14, 2011 at 5:52 pm
                  PlantLady
                  Participant

                    That's what I thought I'd understood our first oncologist to say.  This oncologist (melanoma specialist) isn't ordering MRI for the brain, but maybe we should question that.  It sure wouldn't be the first time we've questioned him!

                    CJ, wife of Ron Stage IV

                    • August 14, 2011 at 1:17 pm
                    Gene_S
                    Participant

                      Hello,

                      My husband had pet scans done but his Dr. said they don't show the brain as it is always active so he has MRI's done for the brain purposes.  Just a little info about our Dr.'s procedures.

                      Judy wife of Gene_S Stage IV

                      • August 12, 2011 at 11:41 am
                      PlantLady
                      Participant

                        We don't know the next plan of action.  The doctor doesn't want to wait till Sept for the PET whole body scan, but, rather do it a month early, so that he can make the next plan.  We see him Aug 24th.

                        My husband is BRAF NEG, unfortunately. 

                        He lost another 6 lbs. this week and will call the doctor this morning to see if anything can be done about the wasting.

                        The upcoming PET scan will include the brain.   The last time the brain scan was an MRI with contrast.  This doctor includes the brain in the PET whole body, rather than ordering a separate MRI for the brain.  I don't know why the referring oncologist preferred a different scan for the brain than his current doctor.

                        Waiting for the Scan Date is nerve wracking.

                      • August 11, 2011 at 11:50 pm
                      MichaelFL
                      Participant

                        Hi,

                        Have you discussed the next plan of action? Has he also been checked for the BRAF mutation?

                        As you mention drop foot, when he is to be rescanned, you may wish to have a scan of his brain as well.

                        Good luck.

                        • August 15, 2011 at 5:13 pm
                        jag
                        Participant

                          test

                          • August 15, 2011 at 5:13 pm
                          jag
                          Participant

                            test

                        Viewing 3 reply threads

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