The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Liver Mets and immunotherapy

Forums General Melanoma Community Liver Mets and immunotherapy

  • Post
    Christinad
    Participant
    Good Morning everyone,

    I read that immunotherapy is not as effective in patients with liver mets. Anyone have any thoughts or data on this?

    Loading spinner
Viewing 10 reply threads
  • Replies
      ed williams
      Participant
      Where did you read that Christinad?

      Loading spinner
        Christinad
        Participant
        Hi Ed,
        I’ve googled way too much and can’t tell you exactly where I read it. I think I’m letting my nerves get the best of me as I found out I have lesions on my liver and spleen. Possibly going from stage 3 to 4 after 5 years of NED. That’s why I’m bringing the question here because I know you all have lots of good information to share, particularly you and Celeste. I know a lot of things on the internet are not from reliable sources but I keep going back to it (I know, I need to stop lol).

        Loading spinner
      Bubbles
      Participant
      Hi Guys,

      There is some research (old and new-ish) that addresses immunotherapy and liver mets.  Here is one report with a link to an older post within:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/03/clinical-condition-of-melanoma-peeps.html

      HOWEVER!!!!!!!!!!!!!!!!!!!

      1.  I have known folks with liver mets who do very well!
      2.  Some folks with liver mets have added radiation of the liver lesion to their immunotherapy and do well.
      3. In the 2019 report – I think the key point is something we’ve long known – immunotherapy works best with the lowest tumor burden.  In my humble opinion, the data in this report is muddled with that.  Unfortunately, most folks who discover they have a liver met do so at the same time that they discover they have a large tumor burden in the liver and elsewhere.  So, I think that affects this data.
      4. Finally, despite the fact that melanoma in the liver and everywhere else sucks great big stinky green wizard balls – it is still a beatable scenario!!!!!!!!!!!!!!!!!!!

      Hang in there.  Hope that helps.  c

      Loading spinner
      Bubbles
      Participant
      PS!!!

      Also fudging up the 2019 report data is that fact that n = only 57 melanoma peeps were given the ipi/nivo combo.  303 were given anti-PD-1 as a single agent and we KNOW that the combo is more effective than anti-PD-1 alone!!!  You really have to read the fine print with this stuff.

      c

      Loading spinner
        Christinad
        Participant
        Thank you Celeste! I can’t even begin to tell you how helpful this information is!  It gives me great hope for the future.

        Loading spinner
        Christinad
        Participant
        This reply has been marked as private.
      Mark_DC
      Participant
      Hi Christina,

      I am sorry for your bad news (although you still need to do the biopsies to confirm, so there still is a chance – although for me years ago my biopsies turned out bad 👎)

      It’s great that you have Ed and Celeste replying to you, our best experts

      I would not google too much but just read what they have written. And make sure your oncologist is a melanoma specialist – in which case the advice they give should be similar to what Ed, Celeste and others suggest.

      For you the good news is that you have not tried any treatments – only interferon which Celeste hates and is not any good, that was the old standard of care and probably it was no good. So you have immunotherapy to try, targeted therapy if you have BRAF, TVEC + immunotherapy which really helped me, and then there are new studies like the LAG-3 stuff just coming out. So you have loads of options plus radiation + immunotherapy. Then TILs etc etc. Many many more than six years ago. And my guess is that you have a low tumour burden if you have caught it early.

      So I would make sure you are in a good facility, have a melanoma specialist, agree on a course of treatment, maybe take it to a second opinion too (may give you new ideas or reasure you that the plan makes sense; hearing it a second time for me was much easier to understand).

      Am sorry you have had terrible luck; while the bulletin board has become quieter in recent months, there are many useful older posts and the treatment options are far far more than six years ago. It means that the survival statistics are much better too than reported.

      I really wish you well, and I know many here more expert than me will try to help you through this

      Mark

      Loading spinner
        Christinad
        Participant
        Hi Mark,

        Thank you for your support. The lesions (liver and spleen) were seen on an abdominal ultrasound which was done because of abdominal pain and nausea. I also had an elevated white count, platelet and LDH.  Luckily the symptoms are subsiding. Liver function tests are normal. Saw my Oncologist, who is a melanoma specialist and recommended a pet/ct scan which is scheduled for tomorrow.  He thinks it is likely I have a reoccurrence but of course can’t be certain without further testing. I’m holding on to hope at this point.

        You’ve all been so helpful with sharing your knowledge and personal history. I can’t thank you enough.

        Loading spinner
      triciad
      Participant
      Hi Christina,

      i am no expert…Ed and Bubbles and all of the others here really know their stuff.  I just wanted to let you know that over 5 years ago, I had melanoma all over…liver, spleen, bones, lungs, etc.  My oncologist put me on Tafinlar and Mekenist (BRAF +) and those tumors just melted away!  It was amazing!

      God bless you and I wish you much success with whatever treatment you choose!

      Stay strong,

      Tricia

      Loading spinner
        Christinad
        Participant
        Thank you Tricia for sharing this incredible news with me! I’m so happy for your success! This brought tears to my eyes and gives me great hope.  It shows we can’t rely on statistics and numbers. Congratulations!

        Loading spinner
      THMoore
      Participant
      Hi Christina,
      I was diagnosed March 1 2020 after 5 misdiagnoses. I had a lump pop up on my neck, and during surgery at MDA, it was determined I had melanoma of the Parotid gland. No skin cancer ever. So I am a Non Primary, and non V600. Anyway, fast forward to today one year later, I have had surgery, and 2 weeks after 30 grey of radiation, It was determined melanoma had spread to 5 nodes of my neck. Started NIVO immunotherapy and after 3 months, scans showed 5 nodes in my neck were clean but I gained 5 Non Active nodes in my lungs, and a 5CM Active tumor in my liver. Started IPI/NIVO and after the third infusion, developed colitis, dermatitis , arthritis, hypothyroidism and other things. Scans were ran in November of 2020 and I was told I had Stable disease. The 3 infusions basically almost killed me, but I was determined to finish the fourth dose, so in mid January of this year I did. WHEW. So I was rescanned a couple days ago and the oncologist explained, the following:
      Neck is clear, Brain is clear, Liver tumor is completely clear ( Prays GOD ) but the nodes in my lungs have grown too 6MM. The doctor was highly surprised but confused about my lungs. Tests were ran and it was determined I have severe inflammation from arthritis, DUH, I can’t even dress myself due to the pain.

      So in my case my liver tumor completely went away. Keep positive and fight the good fight

      Love and Angel Hugs,
      Trent

      Loading spinner
      SRVilly
      Participant
      Hi Christina,

      I was DX’d in May of 2016, stage 1b.  By Dec. of 2017 a PET scan showed mets (about 10) in my liver.  I was put on Opdivo only (due to pre-existing colitis) in January of 2018.  I did 2 infusions a month for 3 months before my next PET.  In April of 2018 I had the PET which showed all mets in the liver were gone! So, the Opdivo not only worked, it worked with amazing speed! I finished about 2 1/2 years of Opdivo only (with one occurrence of a met in my small bowel, which was removed surgically, during the treatment).  I have been done with treatment since May of 2020 and have had clear PETs ever since.

      So there is hope that these immunotherapies will work on the liver. Remember, we are all different and respond differently to treatment. Just because you read it on the internet, doesn’t mean that will be your outcome.  Stay positive and keep on fighting!

      Best of luck.

      Steve

      Loading spinner
        Christinad
        Participant
        Thank you, Steve.  I’m staying as positive as I can. I get results from my PET scan on Thursday, trying to remain calm but the wait is torture. Thank you for sharing your success with me.

        Loading spinner
      soonerjenn14
      Participant
      Christina,

      I am not nearly as educated as the many experts on this forum (they are total rockstars) but I still want to share my story with you, even though it is not exactly a testimonial or proof that immunotherapy does work for liver mets. I was diagnosed in April 2020 with supposed mets on my liver and bones. My oncologist started me on Opdivo only to start because he believed in my case it was a good beginning point. Fortunately for me, a liver MRI and a subsequent biopsy determined my liver “met” was actually benign (praise). I am, however, sharing because my oncologist was confident enough in the immunotherapy path to treat me with the thought I did have a liver met. I see where others have more evidence to support this so I hope this helps to substantiate this somehow.

      Best wishes and positive thoughts your PET scan will yield good results! Take care!

      Jenn

      Loading spinner
        Christinad
        Participant
        Thank you very much Jenn! I too am praying for good results. So happy to hear your biopsy was negative. That’s excellent news. Wishing you continued success on your journey.

        Loading spinner
      Beany
      Participant
      Hello,

      I had 12 tumors in my liver and after three combo infusions, they nearly disappeared. I also had inch-long tumors in both lungs which are now gone. I am pretty sure this is a high-tumor burden. I agree with what Bubbles said: ” In my humble opinion, the data in this report is muddled with that.” My latest scans in April showed nothing visible.

      I only got through three infusions before my ALT went up to 748. Finally, after 6 months of high-dose steroids and MMF/ Cellphet, the doctor allowed me to start the single infusions of Opdivo. I have just completed 12 infusions as of yesterday. In fact, yesterday was my first double dosage of 480mg. My ALT is 27 and I have not felt any side effects yet but am aware they may come anytime.

      Beany

      Loading spinner
        Christinad
        Participant
        Hello,

        Thank you for sharing. Reading these posts are the only thing keeping me going at this point. The ultrasound report showed multiple liver and spleen lesions. Waiting for the pet scan result to confirm metastasis and see if any lesions anywhere else. I’m terrified of how many other places it could possibly be but reading stories like yours is keeping my hope alive. Congratulations on your success. That’s amazing.

         

        Loading spinner
      Christinad
      Participant
      A giant thank you to everyone who has responded! It truly means the world to me. For those of you who were symptomatic (abdominal pain, nausea, loss of appetite etc) before starting immunotherapy, did you find improvement of the symptoms after starting the immunotherapy?

      Loading spinner
        MelMel
        Participant
        Most definitely! I was deathly ill for 5 months prior to my diagnosis. Severe nausea, migranes and I actually felt like I did not care about anything just was in a daze and could nap in and out of consciousness 24/7. I had no desire nor felt the need to eat nor drink. I was actually afraid to and due to severe nausea, it just took all the energy out of me. My family insisted I start Gerson Diet even though I had no diagnosis. The change was immediate and immunotherapy just helped. My liver tumors as well as lung and interthorasic lymph nodes all reduced by 50% within 2 months and another 33%within the next 2 months. I never once felt any nauseousness while on immunotherapy while I had other symptoms.

        Best wishes,

        Melanie

        Loading spinner
        AMcReader
        Participant
        This reply has been marked as private.
        Christinad
        Participant
        That’s great news Melanie! Sounds like you had a quick response. Thank you for sharing. Can I ask how long ago you started the immunotherapy?

        Loading spinner
      MelMel
      Participant
      I started Nov 2, 2018. Managed to have two combo infusions before my liver issues. Six months of steroids and organ rejection drug. Restarted Opdivo and I am currently on it.

      Loading spinner
Viewing 10 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.