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2 Years Down, 100 more to go

Forums General Melanoma Community 2 Years Down, 100 more to go

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      Hello friends,

      I always like to take a moment to reflect on the monumental-ness of today, March 1.

      On this day, 2 years ago, I moved swiftly from being a Stage 1 Melanoma patient for 24 years straight into stage 4 with a very, very large brain met and a lung met (or maybe 2). I was 16 days postpartum with my first (and I was soon to learn only) child and in that new-mom haze of no sleep, wild hormones and adjusting to this “brand new life” of mine when my very concerned husband took me to the ER for the second time after my brother reminded him that my dad had exhibited similar symptoms when he was diagnosed with stage 4 melanoma 2 years earlier.

      One quick MRI was done and then a teary-eyed, new-dad ER doctor held both mine and my husband’s hands and gave us what seemed like the worst possible news…huge brain met, needs to be removed immediately, Stage 4. I had lived almost my whole life with Melanoma and watched my dad pass away from it in less than 2 months only 2 years earlier. We were heartbroken in a way that you can only be when you have a brand new life at home and you have a very, very real fear that you are almost immediately going to be torn from it.

      However, somewhere over the course of the next few days several doctors, nurses, social workers and other kind people would hold our hands and help us to understand that this did not necessarily mean the end is imminent. There were options and they were going to work with us to find the best ones. It has been an adventure with lots of ups, downs and in-betweens, but two years later I’m still here, I’m still thriving and, by the grace of all good things, I’ve gotten to that sweet, sweet spot of NED.

      Every day when I get two squeeze my wiggly little two-year old daughter, I’m still beyond grateful that I get to be here for every kiss, milestone and memory. It is not the journey I would have chosen, but somehow the very bitter has made the journey even sweeter.

      Wishing all of you health and happiness!

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          It’s great to hear the progress in your story and how positive you have remained. Congratulations on today and all the good future results!!!!!!
            First, let me give you a big virtual hug. You have been through a lot. I (partly) share your story. Last year, 2 months after giving birth to my wonderful Ida, I was diagnosed Stage 4 Melanoma with a lung metastasis, which has been surgically removed. 2017 I was diagnosed Stage IIIA with mets in Lymph Nodes. I am on targeted therapy for 1 year since then. Thank god, I stay NED over the last year and hope it will last for a long long time (for both of us). Yes, we will never get pregnant again but I feel very very lucky, raising my beautiful little girl (15 months now) and like you, take every day with her as a big present. Let’s hope we can be there for them till we are old and grey.

            Wishing you only the best from all my heart.

            Sorry for my English. I’m from Germany and not writing in other languages very often. 😉

              Thank you for sharing your story and congrats on NED with decades more to celebrate! I was diagnosed in December of 2018 at 9 months pregnant after a mole biopsy. I had my WLE and SLND at 10 days postpartum and the results were Stage 3. It’s a very emotional time to be over the moon with a precious daughter but also dealing with melanoma diagnosis. I have a scan coming up soon so having some scanxiety but its great to read stories like yours and to hear how wonderful you are doing!
                Congratulations and thank you so much for sharing your incredible story. Wishing you eternal NED.
                  Congratulations. It’s scary to think about being stage 1 for 24 years then being stage 4. Makes me think even with stage 1. . even after surgery/removal and given “all clear,” it’s always still there just waiting for an opportunity to come back.
                    Amanda – such an uplifting, positive story. I’m happy beyond belief that you are able to celebrate this milestone, especially with a young family! My husband is “celebrating” his 8 year diagnosis anniversary this week. He’s blessed to be able to play with our 18 month old grandson – they are such good buddies! Wishing you a lifetime of milestones!
                      Amanda, what an amazing grace and presence you have in the face of something so difficult. I’m so sorry you had to deal with this and at such a young age and exciting period in your life, having a newborn overwhelms the majority of us, doing it with Stage 4 melanoma definitely is a humdinger, but you sure are so much wiser beyond your years. I’m so happy to hear this news, your little one has such an amazing mom. Wishing NED forever for you! I’m also so sorry for the loss of your dad too to this disease. I lost my mom right before having my only child, it was very rough. I’m glad your brother was looking out for you too. Hugs to you and your family.
                        Thanks for sharing I needed this today. Just progressed Stage 4 with 2 Brain, 2 Lung and a spleen met. Getting SRS on Wednesday/Thursday for Brain and then Friday starts SRS to Lung everyday for ~3 weeks. Being NED 3c for almost 3 years really made me think I had beaten it only for it to crush me. I really enjoy seeing these so far success stories.


                            1st of March is also unfortunately a special day for me – that day 4 years ago I got diagnosed with stage 1B melanoma just 6 days after giving a birth to my second girl. Although it‘s ‚only‘ stage 1, it was horrible time for me – holding your new baby and fearing that you want see it growing up. I cannot even imagine, what you must have felt. It‘s so amazing to hear, you are already 2 years later and NED and how positive you are!
                            I wish, that it stays like that for many many years until you are an old and grey grandma.
                            Best wishes from Germany!
                              Thanks, Amanda, for sharing your strength.
                                Dear AMC Reader,

                                Do Not Lose Hope, If I’m alive on May 1, that will mark the 12th anniversary I was told I was going to die in a matter of a few weeks by a doctor who at one time was rated the #1 oncology surgeon in the USA. My sage with melanoma began in July 2001 when 2 days before I turned 50, I had a melanoma mole about half the size of my baby finger nail removed from my right upper arm. I was on the operating table for 6 hours while they continually sent in samples to the lab for analysis. They did a sentinel lymph node test on 4-5 nodes and they came back fine. I was told that no further treatment would be necessary other than seeing the plastic surgeon who did the operation and someone in dermatology every 90 days on an alternating basis. Nothing exciting happened until April 2008. My dermatologist felt something in my right armpit (I didn’t feel anything) and ordered a CT scan. The CT scan showed a growth slightly larger than a golf ball in my right armpit/lymph nodes. Due to the fact it was a matter of a few inches from the removed mole, the oncology surgeon I was referred to was sure it was melanoma and based on the size it had already spread to my brain and lungs and there was nothing that could be done. He ordered a PET scan done to give a better idea of exactly how long I had left, but he knew it wasn’t long. The PET scan was done on a Thursday and since I was doomed anyway, there was no rush request put on getting the results. I was 56 years old with a wife and a 16 year old son. I was much more concerned for them than I was for myself (that’s not to say I wasn’t concerned about myself). The following Friday (8 days after the scan) I got a phone call from the oncologists office. Yes, I did have a melanoma the size of a golf ball in my lymph nodes, but no it hadn’t spread at all. The only part of me that glowed was my right armpit. The following Wednesday I had basically a male mastectomy with all my lymph nodes removed from my armpit to my sternum. Since my first PET scan in 2008 I’ve had 4 additional ones, the most recent being in August 2019, and not a hint of a glow anywhere. The oncology surgeon believes that despite their best efforts, the doctors didn’t get all the melanoma out of me in 2001, so I may be going on 19 years being Stage III. I did not have any treatment done as the only treatment back in 2008 was Interferon and that was just too nasty.

                                I really don’t know why God has kept me alive all these years but I do know that it’s God and not the doctors that determine the length of our lives. We both know that truly life is to be lived and savored one day at a time. I often tell people that you wouldn’t think having cancer has a good side but it does in that I appreciate life and the people I love so much more than I did previously.

                                I will keep you and your family in my prayers and may we both continue to be NED.

                                Take care,


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