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My story

Forums Cutaneous Melanoma Community My story

  • Post
    HeidiZ
    Participant

      Hi All, I feel like I know everyone because I've been coming to this site for good information for awhile but this is the first time posting. I'll try to summarize as much as I can because it's a long story.  2013 a new co worker has a young husband diagnosed with stage 3 melanoma.  Shortly after that he advanced to stage IV and then July 2014 my co workers husband succumbs from the melanoma.  Ippi didn't work for him and by the time he looked into trials it was too late for him.  September 2014 I find a mole on my scalp not the derm because he never checked my scalp during full body checks so I show it to him, tell him how concerned I am because my friends husband just died etc.  derm tells me the mole looks fine and doesn't need to be removed. He said they don't take things off just because it can become something and also says you know what the chances are that you would have melanoma?? Well 7 months later guess what, I ask my daughter to take a look it again and now it's all black. Go back and get it removed punch biopsy size was 2mm, mitotic rate 3. Schedule my surgery end of May, two nodes from neck removed and one node had a protein that melanoma cell would make and other one was clear. So stage 3a now going for 3 month follow ups including ultra sound of my neck basin to check nodes for melanoma plus going for scans and body checks. During one of these checks the technician finds nodes on my thyroid which turns out to be papillary thyroid cancer. Within a week of that diagnosis I find a lump in my neck which turns out to be melanoma. So now its November 2015, I have a complete lymph node dissection with 55 lymph nodes removed and my whole thyroid is also taken out. Now stage 3c melanoma. Still watching and waiting, February 2016, ct scan shows lesions all over my liver, spleen and in my neck and behind my ear you could see many black spots of cancer. Now stage IV.  Start ippi/nivo March 2016, got through all four doses and then continued on with 16 does of keytruda thereafter up until August 2016. Things got smaller and things seem to be stable for the most part  but ct scan still showed lesions on liver.  I started to get a lot of side effects so Dr order my first ct/pet scan in December 2017 and it showed 3 nodes lighting up in my neck so we weren't sure if it could be melanoma or possible thyroid cancer spread. Well glad to report my latest ct/pet scan last month showed no uptake, nothing lit up and the nodules got smaller!! Finally some really good news!  So it's beeen a crazy 3 years but I'm hoping things will only continue to get better and I will be able to call myself a cancer survivor at some point. For now I can take breather for a bit and then I go for my scans again in August. I also have to be vigilant on checking my scars for any abnormalities too. Just keep fighting everyone. Much love to you all, HeidiZ

       

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        Hello HeidiZ.  Thanks very much for sharing your story.  I also had a dermatologist who didn't biopsy when he should have.  It's a tough road to travel but you sound like you are doing great!  Congratulations on hanging in there and staying tough!  We are all stronger than we think.

        Good wishes to you,

        Jennifer

          daughter1
          Participant

            I am reading this from my phone so i can’t respond like i want to.  Please excuse the errors.  I am in shock and so sorry about the negligence.  I am going to re read this tomorrow.   I can’t believe this.  I don’t understand why these doctors don’t err on the side of caution. I don’t get it.  What a strong woman you are.  You will get through this for sure.  Look at what you have accomplished.  Be well. 

            Robin 

            daughter1
            Participant

              I am reading this from my phone so i can’t respond like i want to.  Please excuse the errors.  I am in shock and so sorry about the negligence.  I am going to re read this tomorrow.   I can’t believe this.  I don’t understand why these doctors don’t err on the side of caution. I don’t get it.  What a strong woman you are.  You will get through this for sure.  Look at what you have accomplished.  Be well. 

              Robin 

              HeidiZ
              Participant

                Thanks so much Jennifer and Robin I appreciate it.  It definitely has not been easy and in the beginning I was an emotional mess.  I did try and take legal action 2x against my dermatologist but was told by my lawyer that the dermatologist did "Standard of Care".

                So then this means "Standard of Care" needs to change.  My Derm never checked my scalp and actually said to me, do you know if you have anything on your head you need  me to check because you have a lot of hair to go through!!!

                Heidi

                Coach2u
                Participant

                  I am so happy for you and so happy to hear a success story. I turned stage 4 this year with tumors on spine and legions on liver. Three months ago there were none. Now on ipi/nivo and hope it will work as Keydruda did not. So much fear and anxiety this story really helps. At this point almost be happy with 3 more years just have new grandson so would like to watch him for a while and enjoy my 3 granddaughters. MIke K.

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