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My Melanoma Story

Forums General Melanoma Community My Melanoma Story

  • Post
    RayPMcConnell
    Participant

      On October 13, 2013, I asked my primary care physician to look at a mole on my lower right chest. After examining it he stated that it was a benign keratosis.

       
      On October 4, 2014, I first experienced groin pain and swelling that lead to emergency surgery for what was thought to be an incarcerated hernia. It turned out to be a swollen lymph node. The local pathologists eventually referred the specimen to the Mayo Clinic, who diagnosed metastatic melanoma in late October. I was then referred to the Melanoma Clinic at U of M Hospital in Ann Arbor.
       
      A PET scan was done on November 7, which revealed no additional hot spots other than the post surgical inflammation in the right groin and the mole on my abdomen. Scattered indeterminate lung nodules were detected that would require follow-up.
       
      At my first appointment in Ann Arbor on November 12, I was informed that I would undergo right groin lymph node resection surgery on December 4. The mole was removed, biopsied, and confirmed as the point of origin (Clark's Level IV, Breslow Depth 5.5 mm).
       
      The surgery was performed, and, after over a month of recovery time and the removal of the two surgical drains, I was first seen by my oncologist in Ann Arbor, who stated that I was Stage 3C, and would be subsequently seen for surveillance assuming that the chest, abdomen, and pelvis CT and brain MRI were negative.
       
      The January 19, CT scan revealed multiple nodules in both lungs, several having quadrupled in size compared to the November 7 PET scan (the largest went from 4 to 17 mm). A lung biopsy on February 6, confirmed that I was Stage 4.
       
      I received 2 of 4 infusions of the Nivolumab and Ipilimumab combination immunotherapy treatment on February 27 and March 24, before severe toxicity reactions forced a stoppage.
       
      I developed drug-induced autoimmune hepatitis, diabetes requiring insulin injections (blood sugars spiking to over 500), and meningitis-like brain inflammation. 
       
      I was hospitalized for two weeks and prescribed steroids for a few months until my liver function returned to normal.
       
      On the bright side, CT scans in March and July showed continued shrinkage in both the number and size of the lung tumors, and the CT scan done last Friday showed No Evidence of Disease!
       
       
       
       
       
       

       

    Viewing 23 reply threads
    • Replies
        Bubbles
        Participant

          Dear Ray,

          So sorry for all you have been through, but….CONGRATULATIONS! You are living proof of all the recent studies coming out re immunotherapy generally and the ipi/nivo combo specifically. Yes, sadly, side effects are real and difficult. Yet, with treatment, often prednisone…positive responses are not compromised and side effects can be tamed. And…even when folks have to be taken off treatment, positive responses can continue to develop! That is awesome! Thanks for sharing your story. Wishing you my best! Celeste

          Bubbles
          Participant

            Dear Ray,

            So sorry for all you have been through, but….CONGRATULATIONS! You are living proof of all the recent studies coming out re immunotherapy generally and the ipi/nivo combo specifically. Yes, sadly, side effects are real and difficult. Yet, with treatment, often prednisone…positive responses are not compromised and side effects can be tamed. And…even when folks have to be taken off treatment, positive responses can continue to develop! That is awesome! Thanks for sharing your story. Wishing you my best! Celeste

              RayPMcConnell
              Participant

                Thank you, Celeste!

                I'm profoundly blessed, especially with the news this week.

                RayPMcConnell
                Participant

                  Thank you, Celeste!

                  I'm profoundly blessed, especially with the news this week.

                  RayPMcConnell
                  Participant

                    Thank you, Celeste!

                    I'm profoundly blessed, especially with the news this week.

                  Bubbles
                  Participant

                    Dear Ray,

                    So sorry for all you have been through, but….CONGRATULATIONS! You are living proof of all the recent studies coming out re immunotherapy generally and the ipi/nivo combo specifically. Yes, sadly, side effects are real and difficult. Yet, with treatment, often prednisone…positive responses are not compromised and side effects can be tamed. And…even when folks have to be taken off treatment, positive responses can continue to develop! That is awesome! Thanks for sharing your story. Wishing you my best! Celeste

                    BrianP
                    Participant

                      Incredible story Ray.  Thanks for sharing and congrats. 

                      BrianP
                      Participant

                        Incredible story Ray.  Thanks for sharing and congrats. 

                          RayPMcConnell
                          Participant

                            Thank you, Brian. So glad this roller coaster I've been riding the past year is now going up ๐Ÿ™‚

                            RayPMcConnell
                            Participant

                              Thank you, Brian. So glad this roller coaster I've been riding the past year is now going up ๐Ÿ™‚

                              RayPMcConnell
                              Participant

                                Thank you, Brian. So glad this roller coaster I've been riding the past year is now going up ๐Ÿ™‚

                              BrianP
                              Participant

                                Incredible story Ray.  Thanks for sharing and congrats. 

                                Mat
                                Participant

                                  Great story–wishing you continuing NED status!

                                  Mat
                                  Participant

                                    Great story–wishing you continuing NED status!

                                    Mat
                                    Participant

                                      Great story–wishing you continuing NED status!

                                      RaquelP
                                      Participant

                                        INCREDIBLE! Congrats!!

                                        RaquelP
                                        Participant

                                          INCREDIBLE! Congrats!!

                                          RaquelP
                                          Participant

                                            INCREDIBLE! Congrats!!

                                            jamieth29
                                            Participant
                                              Amazing story ray congrats! Do you still have any side effects?
                                              Jamie
                                              jamieth29
                                              Participant
                                                Amazing story ray congrats! Do you still have any side effects?
                                                Jamie
                                                  RayPMcConnell
                                                  Participant

                                                    Thank you. I'm still on insulin and my blood pressure, which had been under control since 2003, has really spiked up the past two months.

                                                    My oncologist doesn't think the elevated BP is related to the immunotherapy, but he's not completely sure because there are still a lot of unknowns regarding these drugs, especially in combination.

                                                    I told him that I feel like I'm playing whack-a-mole with all these health conditions ๐Ÿ™‚

                                                     

                                                     

                                                     

                                                    RayPMcConnell
                                                    Participant

                                                      Thank you. I'm still on insulin and my blood pressure, which had been under control since 2003, has really spiked up the past two months.

                                                      My oncologist doesn't think the elevated BP is related to the immunotherapy, but he's not completely sure because there are still a lot of unknowns regarding these drugs, especially in combination.

                                                      I told him that I feel like I'm playing whack-a-mole with all these health conditions ๐Ÿ™‚

                                                       

                                                       

                                                       

                                                      RayPMcConnell
                                                      Participant

                                                        Thank you. I'm still on insulin and my blood pressure, which had been under control since 2003, has really spiked up the past two months.

                                                        My oncologist doesn't think the elevated BP is related to the immunotherapy, but he's not completely sure because there are still a lot of unknowns regarding these drugs, especially in combination.

                                                        I told him that I feel like I'm playing whack-a-mole with all these health conditions ๐Ÿ™‚

                                                         

                                                         

                                                         

                                                      jamieth29
                                                      Participant
                                                        Amazing story ray congrats! Do you still have any side effects?
                                                        Jamie
                                                        mrsaxde
                                                        Participant

                                                          I read your first sentence and stopped. My doctor examined a mole on my back that I asked him to look at, and his verdict was "seborrheic keratosis." I didn't worry about it for a while, then when it got larger I asked him to take it off. He removed it in his office, and a week later when I went back to get the stitches out, he told me it was melanoma.

                                                          So my story starts similiarly to yours. I hope mine ends like yours, too! I've had 4 cycles of Keytruda, and so far things are shrinking.

                                                          Here's to your continued health!

                                                          mrsaxde
                                                          Participant

                                                            I read your first sentence and stopped. My doctor examined a mole on my back that I asked him to look at, and his verdict was "seborrheic keratosis." I didn't worry about it for a while, then when it got larger I asked him to take it off. He removed it in his office, and a week later when I went back to get the stitches out, he told me it was melanoma.

                                                            So my story starts similiarly to yours. I hope mine ends like yours, too! I've had 4 cycles of Keytruda, and so far things are shrinking.

                                                            Here's to your continued health!

                                                            mrsaxde
                                                            Participant

                                                              I read your first sentence and stopped. My doctor examined a mole on my back that I asked him to look at, and his verdict was "seborrheic keratosis." I didn't worry about it for a while, then when it got larger I asked him to take it off. He removed it in his office, and a week later when I went back to get the stitches out, he told me it was melanoma.

                                                              So my story starts similiarly to yours. I hope mine ends like yours, too! I've had 4 cycles of Keytruda, and so far things are shrinking.

                                                              Here's to your continued health!

                                                                RayPMcConnell
                                                                Participant

                                                                  Thank you so much! I will be praying for you.

                                                                   

                                                                  RayPMcConnell
                                                                  Participant

                                                                    Thank you so much! I will be praying for you.

                                                                     

                                                                    RayPMcConnell
                                                                    Participant

                                                                      Thank you so much! I will be praying for you.

                                                                       

                                                                    JoshF
                                                                    Participant

                                                                      It;s one heck of a road to go through but seeing NED at the end is simply awesome. Congrats!!! Keep it going!!!

                                                                       

                                                                      Josh

                                                                      JoshF
                                                                      Participant

                                                                        It;s one heck of a road to go through but seeing NED at the end is simply awesome. Congrats!!! Keep it going!!!

                                                                         

                                                                        Josh

                                                                        JoshF
                                                                        Participant

                                                                          It;s one heck of a road to go through but seeing NED at the end is simply awesome. Congrats!!! Keep it going!!!

                                                                           

                                                                          Josh

                                                                          DZnDef
                                                                          Participant

                                                                            Congratulations on your NED status!  A tough and rocky road to get there to be sure, but you couldn't have arrived at a better destination!  I hope your other medical issues resolve quickly and you can get back to living life the way it is meant to be lived!

                                                                            DZnDef
                                                                            Participant

                                                                              Congratulations on your NED status!  A tough and rocky road to get there to be sure, but you couldn't have arrived at a better destination!  I hope your other medical issues resolve quickly and you can get back to living life the way it is meant to be lived!

                                                                              DZnDef
                                                                              Participant

                                                                                Congratulations on your NED status!  A tough and rocky road to get there to be sure, but you couldn't have arrived at a better destination!  I hope your other medical issues resolve quickly and you can get back to living life the way it is meant to be lived!

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