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Nanners10

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      Nanners10
      Participant

        Hi there,

        I am also in Canada and am wondering if you are being seen by a melanoma specialist. I know there are oncologists that just treat melanoma in larger city centers i.e. Toronto. It seems very odd to me that you haven't received a call back from your oncologist. I am not aware of the process of immunotherapy after taf/mek but am saddened to hear that it wouldn't be covered especially since so many have had success in switching to an immunotherapy after use of taf/mek to lessen the tumor load.

        I am thinking of you both and hope you can get answers to his pain soon.

        Nancy

          Nanners10
          Participant

            P.S. Congratulations on your wedding!

          Nanners10
          Participant
            Hi Mike, sorry to hear you are feeling so awful. I don’t have any experience with the nivo portion but when I was on ipi I had intense nausea that lasted just over three weeks. After that I tolerated it just fine. I hope this is just your body adapting to the drug. Keep up the fight! Nancy
            Nanners10
            Participant
              No one can be sure until a biopsy is performed. That being said, my mole did flake and peel and it was a melanoma. I say better safe than sorry and insist it be removed.

              Nancy

              Nanners10
              Participant
                This post is so incredibly helpful and comprehensive! Thank you for all you do Celeste!
                Nanners10
                Participant
                  Hi there, I had melanoma appear in my groin lymph nodes twelve years after initial diagnosis. If I hadn’t felt the lump I would never have known because there wasn’t any pain at all.

                  Always something to discuss with your Dr. Though at your next follow up!

                  Nancy

                  Nanners10
                  Participant
                    So good to hear good news!!! Congratulations!
                    Nanners10
                    Participant
                      I’m SO sorry to have to welcome you to this board but it is an awesome place to ask questions, vent and get comfort or reassurance.

                      Hang in there, it is overwhelming, I can certainly understand. My melanoma returned 12 years after my WLE and I have little ones at home as well. It is terrifying!

                      It sounds like you are under the care of a good team and getting into a trial at stage three is a great idea!

                      The best advice I can give you is to just keep looking forward, whatever happened to get you here happened and nothing can change that.

                      You can do this!

                      Nanners10
                      Participant
                        I thought I had been told that each infusion was around $125,000. I am in Canada.
                        Nanners10
                        Participant
                          Hi Ashley,

                          I can understand exactly how you feel. I too struggled with this decision because I always felt like melanoma was hanging over me so didn’t want to risk another pregnancy. I had a tubal as well since it was me that shouldn’t have any more children, not necessarily my husband.

                          There is really nothing I can say to make this easier but just wanted to respond to let you know that your situation resonated with me.

                          Wishing you the best,
                          Nancy

                          Nanners10
                          Participant

                            Hi Jeremy,

                            I am usually just a lurker learning so much from all on this board and I don't have much to contribute but I wanted to reach out. I'm so sorry for all that you've been through. I myself was a late recurrence melanoma patient as well so I completely understand the shock and fear that you are experiencing. I also have a young family at home and have experienced all those moments of fear that you mentioned in your post. I just wanted to reach out and let you know that you are not alone in how you are feeling and I hope you find some comfort here on this board. I know that there are many days that I find great comfort coming here.

                            There are many long term stage iv survivors on this board so I always take comfort in that fact. As well, the new treatments out there are changing the face of this disease.

                            As for the mental side of this disease, it's tough. I have heard mention of others talking about support groups, perhaps counselling is an idea as well.

                            I'm sure many others will chime in with ideas and options for you to consider. I am happy to hear that the keytruda is working so well for you, albeit with some pretty intense side effects.

                            Hang in there, melanoma is a beast but you can beat it!

                            Nancy

                            Nanners10
                            Participant
                              I had one with local as well and it was fine. It was in an awkward spot on my shoulder so it took a while to heal and still gives me tightness and sometimes pain but the procedure was fine.

                              Nancy

                              Nanners10
                              Participant
                                Tackling the anxiety with the disease is the trickiest part. It will get better as time goes on. I hope the biopsy turns out to be nothing for you. As a side note, both times I had lymph node involvement, the lymph nodes they didn’t hurt me at all.
                                Nanners10
                                Participant
                                  I am also anemic (iron deficient anemic as well). Mine was officially diagnosed after completing ipilumumab. My hemoglobin levels are still quite low around 93 and I don’t know what my ferritin levels are at this point. I had to have an endoscope and colonoscopy to ensure I didn’t have any internal bleeding. What was found was celiac disease. They don’t know if it was because of the ipilumumab or just never found until that test.

                                  So much with this immunotherapy is still unknown.

                                  Best of luck!
                                  Nancy

                                  Nanners10
                                  Participant
                                    I am also anemic (iron deficient anemic as well). Mine was officially diagnosed after completing ipilumumab. My hemoglobin levels are still quite low around 93 and I don’t know what my ferritin levels are at this point. I had to have an endoscope and colonoscopy to ensure I didn’t have any internal bleeding. What was found was celiac disease. They don’t know if it was because of the ipilumumab or just never found until that test.

                                    So much with this immunotherapy is still unknown.

                                    Best of luck!
                                    Nancy

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