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Possible stage IV – need advice!

Forums General Melanoma Community Possible stage IV – need advice!

  • Post
    Christinad
    Participant
    Hello everyone,
    I was diagnosed with stage 3 melanoma 6 years ago. When I was first diagnosed I found this site and visited daily. This forum has helped me tremendously. I never posted but feel like I know some of you well :)
    I had a WLE and complete lymph node dissection followed by a year of interferon. At that time immunotherapy wasn’t offered. I had NED of disease until now.
    Last week I got routine labs done before my follow up with my oncologist. WBC and neutrophils slightly elevated, platelets high and LDH elevated at 255 all for the first time. A few days later I experienced abdominal pain, nausea and loss of appetite. Had an abdominal ultrasound done which showed lesions in liver and spleen. Devastating news to hear! Discussed with my Oncologist who thinks it is likely a reoccurrence or a new primary. Scheduled for pet/ct on Monday.  If positive for malignancy a biopsy is next. We discussed the possibility of opdivo/yervoy if this is in fact a reoccurrence.  Anyone have a similar experience they can share? I’m trying to stay as positive as possible as I know people have had good success with immunotherapy.
    Just when I got to the point where I didn’t think of my melanoma diagnosis much here I am again, but I’m willing to put up a fight! Xoxo

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  • Replies
      Bubbles
      Participant
      Sorry you have the need to return to this board, Christin, but as you know – there are many caring smart peeps here, so I’m sure others will chime in.  I was diagnosed with Stage IIIb melanoma in 2003 and understand living through a time when current treatments were not an option.  I had a second primary in 2007 (cutaneous) and advanced to Stage IV with brain and lung mets in 2010.  Yervoy was available as a single agent in 2011.  However, I gained access to Nivolumab (now Opdivo) as a single agent in a trial and have been NED for melanoma since then!  Now, both anti-PD-1 products are FDA approved.  But, we have learned that the combo of ipi/nivo (or as you correctly noted – Yervoy/Opdivo) give the best response for melanoma patients.  Here is a primer I put together that gives you a breakdown of current melanoma treatments if you are interested:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

      Of course, there are many reasons for liver lesions – many of them benign.  So a definitive answer is needed.  However, if melanoma ends up being what you are dealing with – there is hope.  Hang tough.  Ask more questions as you have the need.  Wishing you my best.  Celeste

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        Christinad
        Participant
        Thank you, Celeste. I was hoping you’d respond.  The information you provided is very helpful. If it turns out I do need treatment I’m praying I’ll be one of the lucky ones like you who has a good response. Google is not my friend and I’ve realized I need to stay away from it as it is depressing reading about statistics.  Reading information on your blog is much more positive. I’ve been following your advice to others for years and it has kept me going. I know this is just a bump in the road.

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      AMcReader
      Participant
      Oh Christin, so sorry to read this news! I hope this ends up being a blip on your radar and not real progression, but if not there are many great immunotherapy options. I’ve been managing Stage 4 for 3+ years now and although I’m not NED yet…I like to tell people I’ve never progressed while on treatment and even enjoyed a sweet 1.5 years off treatment before progression.

      Celeste has weighed in with all of her brilliant advice so you have the facts you need to get started. From personal experience, I did the Ipi/Nivo combo and found it manageable. I did have side effects — occasional chills/fever, a bit of exhaustion, stomach pain (but not colitis) and eventually acute hepatitis which prevented me from getting the final combo dose — but I was able to mostly manage life just fine with a bit more sleep and compassion for myself. I still worked full-time (I did take a couple of sick days and had the flexibility to work from home a few times), played with and managed my 1 year old daughter, decorated and celebrated Christmas, threw my daughter her first birthday party and traveled. Did I feel 100%, no. Was I still able to go about and appreciate life, yes!

      Wishing you wellness and strength to manage the unknown.

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        AMcReader
        Participant
        Most importantly my tumor burden reduced by about 75%!

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        Christinad
        Participant
        Thank you for sharing your journey with me. I’m so happy to hear you’re doing well and able to enjoy spending time with your baby girl and live life despite side effects. That’s fantastic! I love your positivity.
        As a previous oncology nurse, I always told my patients being positive is the best medicine. I guess I should practice what I preach and get out of this funk I’m in.

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