Just beginning my journey

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    • #6743
      Anonymous
      Inactive

      I am new to the world of Melanoma. Went to the doctor a year ago and mentioned some changes in a small freckle on my upper left thigh. No big deal…I took a picture with my iPad and monitored it for another year. Definite changes observed and my new physician went ahead with a biopsy. That was on November 4th. Received the positive melanoma result on the 16th of November(1.3 mm depth) and had an appointment with the cancer centre the next week. A wide excision and SLNB was completed December 9th and at the same time, another biopsy of a similar looking spot was taken off my right upper back. So now…..I am waiting. Will probably get the results back right after Christmas. Pretty scary stuff! My kids are 19,18,13 and 11. Luckily I have some Christmas shopping that will keep me distracted!
      So happy that I found this site. Reading the experiences of others has helped me to feel stronger and less intimated by what lies ahead.

    • #6744
      Nevin
      Participant

      Welcome Beverly! Sorry you are having to join the journey of a melanoma patient but yes, happy you have found this site! With further waiting involved it does help to have something to keep you somewhat distracted and when thinking of what might lie ahead it doesn’t help in any way to think negatively or to worry yourself constantly. Think positive and be thankful in knowing there are always new advances in treatment of and in the approach of melanoma. Of course having the support of such sites as this and all the resources available in finding this site as well as others, makes a big difference in not feeling quite so alone.

      I will be 3 years since diagnosis in February; stage 3, and am 2 1/2 years NED; No Evidence of Disease. It’s been a long road and at times very difficult to travel, but there are so many wonderful and caring people I can immediately think of and be thankful for in this journey. Ask questions, lots of questions and advocate for yourself. I hope you will find you have a medical team who will do the best in advocating for your care as well. It can be rather scary in the beginning uncertain of what’s coming but with a good support system in place both in the medical field and in having family and friends around you to lean on in getting through each step of the way you will be fine.

      I will be thinking of you and please feel free to ask me anything you wish.
      Cathy

    • #6770
      Nevin
      Participant

      Wondering if you are visiting the site of recently at all Beverly and certainly wondering how you are doing?

    • #7093
      Anonymous
      Inactive

      Wow. Cant even sleep. Had a mole on the back of my leg in November. Since then have had a biopsy that came back as Melanoma. Had the Melanoma removed and they did another biopsy on my groin. Just went to the doctor 2 days ago and he said the good new is that it is positive in one but not two (trying to figure out what that means) Kind of in shock as now I go for surgery to remove the lymph nodes on my right groin. After reading the stories on here I am terrified I am going to be leaving this world. Do people survive this. Cant even think straight. Had to have an xray a month ago and he said nothing about that but sent me for an ultrasound today. Can it really spread this quick.

      • #7100
        Anonymous
        Inactive

        Hello Sunshine,

        Yes, people do survive this, I am a survivor of stage 3 malignant melanoma, found on my back! I understand how you are feeling, it is quite a shock hearing you have melanoma. In hearing that and then the barrage of tests, etc. it is overwhelming. You hardly have time to take it all in as everything seems to be happening all at once. One thing to keep in mind, is to ask questions, ask for explanations all the way along. You are your own best advocate.

        I am recently three years post diagnosis and while I am going forward living my life trying to make plans, it is always there somehow present in my mind that it could come back. I’m getting better I think at taking control rather than letting melanoma control me and my life. I had two surgeries then one year of treatment; 1 month of high dose interferon and 11 months of low dose.

        Keep me posted but please know we do survive and go on with our lives! I am happy to answer any questions you may have! I will be thinking of you and hoping for the best possible outcome.

        Take care. ))))) HUG (((((

    • #7101
      Anonymous
      Inactive

      P.S., I am happy you found your way here to the Melanoma Network! I have met some wonderful people here and have kept in touch with a few of them and have great support in sharing our stories with each other, our fears and our triumphs in going forward and finding ways to remember to LIVE each day!

    • #7122
      Anonymous
      Inactive

      One month ago had mole removed from ankle then a five inch removal of surrounding area…now waiting to see dermatologist because have many moles on my back to…stage one they say …say I’m lucky but I don’t feel so lucky….my son had cancer ten years ago lost his leg …my family doesn’t need anymore bad news ….I am struggling with my emotions right now …

    • #7125
      Anonymous
      Inactive

      I am sorry to know your family has already been so affected by cancer. In the beginning it is especially difficult to deal with the emotions you feel. There are so many thoughts running through our heads and the amount of information coming at you can be so overwhelming. It’s important while difficult to find something that gives you a break from your own thoughts at times. I found listening to music was helpful in giving me something else to focus on. Emotions can take hold and it’s ok too to allow yourself a good cry, as opposed to holding it in. Surround yourself with those you feel at ease with and who will understand and support you in a very difficult journey.
      I’ll be thinking of you.

      Cathy

    • #7126
      Anonymous
      Inactive

      Thank you …hard to be strong all the time cancer sucks ..have lost two aunts.. grandma an uncle and my son is ten years clear now but never not a worry in mind of it returning …now me

    • #7127
      Anonymous
      Inactive

      You are most welcome! I greatly appreciated finding this site following my own diagnosis. There are two fellow melanoma survivors I met on here and we have stayed in touch with each other. It helps to know you aren’t alone, in dealing with a diagnosis, in the fear you have in the unknown and what next as well as knowing what you are feeling, afraid of, trying to understand is quite normal under the circumstances you find yourself in.

      I am thankful for a very understanding family doctor who is a great listener and reassuring in telling me it is quite understandable that I feel worried about recurrence.

      There are members of my own family whom have been lost to cancer and that can indeed make it difficult to be positive, but I truly believe no matter what cancer throws at you, a positive attitude can help. It doesn’t mean we don’t feel the pain, the fear, it just means we choose to rise above it, live beyond the ills alone and shield ourselves against the worst!

      Take care Vicki and know I’m here! Hugs.

      Cathy

    • #9625
      Anonymous
      Inactive

      I had a mole on my back – 1.22mm – removed and excised…. melanoma

      Excision was negative, just the mole positive… excision was in the Dom Rep

      Had a gammagraph in the DR… neagative
      2 mos later, lump in the closer armpit…

      sonagram showed 3 inflamed nodes…. removed
      all positive

      now am in Canada/US looking for oncological treatment.

      US PET-CT scan is $1450US self pay

      I am self pay based on a pre-existing condition in my int’l insurance policy.

      Yervoy is being proposed… expensive.
      $40,000 each in the US, waiting for my Cdn Appt June 2 in London ON to compare costs.

      PET-CT will be Sunday…. in the US, after a Tues doctor’s appt.

      can’t feel any other nodes….

      maybe that 3 node removal got it all

      Just starting…..whew !!

    • #9630
      Annette Cyr
      Participant

      Hi WBW,
      You are having quite the time. And to top it off, doesn’t sound like you have insurance coverage? Are you working in the US on contract? Anyway, I am hoping your CT/PET scan come back clear. Then are they planning on a complete lymphadenectomy of the lymph basin? I would think that would be next steps to identify if it is elsewhere in the basin if the CT/Pet are clear. If not, then you may be looking at more surgery if it has spread and is operable. Otherwise, it would be treatment with one of the approved therapies – like you mentioned – Yervoy – it is expensive here too – likely around $115,000 CDN or more for the 4 intravenous treatments. And then you also have to be in hospital for those treatments, so would have the cost of that too. I am truly sorry you are having to go through this but hoping you can find a way to access the proper treatment.

    • #9631
      Anonymous
      Inactive

      Nope, when I left the US , my new company ‘pre-existed’ me for any skin issues after 2 pre-basal removals.
      No plans so far for more surgery…. unless the scan shows something operable.

      Yes, immunology is next on the list, I expect.
      We’ll see which drug they opt for.

      I have two horses in the race..
      The Henry Ford Clinic in Detroit and the London Regional Cancer Clinic.

      I finally feel like i’m making headway… I was discouraged about the Cdn delays.

      I have an appointment in London on Thursday – PET-CT scan in hand and perhaps more pathology & blood work…. so expect fewer delays.
      Maybe even my BRAF results……holiday today in the US.

      US doctor said i was still in the early stages.
      I was worried.
      The spot was identified late Sept. I had 2 doctors get sick and cancel appts costing me 2 months.
      Node removal April 19….. another month before the Henry Ford appt., May 25.
      Finally , I seem to be getting traction.

      Thanks for your thoughts.
      I’ll be looking at the various drugs … Yervoy, Pembrol, Opdiva, etc.
      None are cheap………… ouch !!

    • #10786
      Anonymous
      Inactive

      OK, checking back in.

      Have had 6 treatments of Keytruda (the Jimmy Carter drug).
      I am possibly the first Cdn patient to get this ‘off trial’. It was approved May 6/16, I started in June.
      There really is no ‘book’ on this yet, where the doctor must weigh the medical & fiscal responsibilities.
      Because I am self pay , I get no advice from OHIP or a medical insurance carrier.
      Merck(the manufacturere) talks only to medical personnel, not the patient.

      I have had significant node reduction after 4 sessions and will stop after #6 on Oct 11/16
      Steady monitoring from there forward.

      Without an advocate in the game , I am adrift – just me and the doctor.
      Merck told me in the USA, they assign a case manager to coordinate with the doctor& the health care company.

      Without Merck, accessing the trial results is not easy.
      A second opinion is impossible.

      Doctor consultation coming Friday

    • #10787
      Annette Cyr
      Participant

      Hi there,
      Nice to hear from you but wish it was under better circumstances. I am glad they have you on Keytruda. It can show some pretty amazing results in a short period. I gather from all the prior conversations that you are a US citizen working in Canada, and due to pre-existing conditions, your private insurance doesn’t cover your treatment. That is a pretty heavy financial burden for sure. Would it make more any difference to be treated in the US, under your government medicare? Likely not. But even as citizens here and covered in Ontario by OHIP, we don’t get assigned any case managers – it is just you and the doc pretty much. The drug companies do have access to third party drug assistance folks though, who may be able to provide you with some support, if you are having to pay this all on your own. Let me know what type of help you think you need and I will see if I can connect you. My email acyr@melanomanetwork.ca

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