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.

Maybe post-adjuvant-nivo progression to Stage IV? Please help

Forums General Melanoma Community Maybe post-adjuvant-nivo progression to Stage IV? Please help

  • Post
    OnJnAnT
    Participant
      Hi All,

      This is my first time posting, but i’ve definitely been reading and benefiting from this board over the past two years. Long story short, but I have been Stage 3a since 2019 (NRAS),  was on adjuvant nivo for a year through January 2021. I finished with hypophysitis, but was NED.

      In April 2021, a ct found a .5 cm nodule in my left lung, that grew to 1 cm in September, and now 1.1 cm this month. I’ve struggled to officially be diagnosed as Stage IV, as the bronchoscopy was nondiagnostic, and my recent ctDNA test (Signatera), was negative. CT and brain MRI are otherwise clear. My oncologist presumes this is melanoma given its growth, but I have not yet been officially diagnosed.

      My onc (Evan Lipson at Johns Hopkins) is in the process of evaluating current clinical trials that he will present to me as recommended options, while leaving standard combination immunotherapies as back-up plans, given the slow growth of the suspected tumor, the toxicities of standard combos, and the promise of newer therapies. I would go through another attempt at biopsy as part of any of these trials as another attempt to confirm metastases.

      It has been a difficult couple of months with this uncertainty. I feel a little bit in limbo, and not knowing how to plan for the future has taken a toll.

      I have had a really good experience with Dr. Lipson, and trust that I will get great advice for him and that he has the resources to find good options for me. I was curious, given that there are a lot of different trials out there around the world, whether folks on this board would counsel getting  2nd or 3rd opinions in my situation. I don’t know the lay of the land enough to know whether this would be a productive exercise on my part, or if all top oncologists in the field will be keyed into the same things, and would end up being a waste of my time.

      Thanks in advance for your help!

    Viewing 2 reply threads
    • Replies
        Bubbles
        Participant
          So sorry for what you are dealing with.  Unfortunately, there are many benign diagnoses (and cancers) that can cause nodules in the lung.  Of course, the fact that it has grown and your prior history of melanoma are very concerning.  I am a big believer in the importance of ctDNA testing and have undergone the Signatera test myself – though for slightly different reasons.  So, the fact that it was negative is very heartening though not completely definitive – as is the fact that CT’s and the brain MRI were negative.  One thing to remember about the Signatera test, if it was done the way mine was, is that it is looking for DNA that was found in your previous tumor or very likely renditions thereof.  That makes it very good when looking for bits and pieces specific to your prior tumor.  But it wouldn’t pick up something that wasn’t, in your case, melanoma.  Therefore, it cannot take the place of a biopsy.

          I firmly believe that two heads are better than one.  Another perspective.  Another set of options.  That is never a bad thing.  However, I don’t know how much information you will attain until you have definitive biopsy results.  Not all lesions can be reached via bronch.  Sometimes a needle biopsy is required.  Sometimes a thoracotomy is required.  I know those sound very unfun, but I would push for getting a biopsy somehow.

          After results are obtained, you will know a great deal more about where you stand and will be more likely to get better information from a consultation which I certainly encourage at that point!!!  Most would be happy to discuss your case with your onc and many are set up to do telehealth consultations as well as in-person appointments with patients.  Here is by no means a complete list of melanoma specialists I put together for folks:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=specialists

          I wish you my very best and hope you find answers soon.  Ask more questions as you have the need.  As you already seem to know, this board is filled with lots of smart caring peeps.  Yours, celeste

          PS As someone who has been living in melanoma world since 2003, long before current treatment options were available, I certainly understand your sense of being without anchor or point of reference as to where to head and plan for your future.  I wrote this in 2010, AFTER having radiation to a brain met and the right upper lobe of my lung removed having advanced to Stage IV melanoma, but BEFORE attaining access to a Phase 1 clinical trial of nivolumab later that year ~ https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/09/looking-forward.html 

          c

          Mark_DC
          Participant
            Dear OnJnAnT

            As always, I agree w Celeste, she gives great advice. I guess to obtain the biopsy first (because the ctDNA test is suggesting no melanoma (I think) and yet melanoma is suspected. Then Dr. Lipson will give you options. I think at that time, when you have the information and the options, that would be a good time to get a second opinion – if it’s too confusing or if Dr. Lipson is not clear.

            That said, I have twice been to Dr. Lipson (at Sibley in DC) for second opinions, and both times I have found him excellent. Explains really clearly, thorough. First time round I didnt take his advice not to start adjuvant ipi, in case i got side effects that might then rule me out for a trial. I went on ipi but had side effects so had to stop then progressed. Second time round we were looking at what to do on a tumour that was growing slowly thanks to pembro but not disappearing – I was about to do a third round of surgery but he voted for TVEC, so I took that back to my oncologist who said OK let’s give it a try – I was switched to Dr. Rapisuwon (and Dr Boisvert) at Washington Hospital Centre who were willing to give this a try – and it seems to have worked. So I have great respect for Dr. Lipson. I also know he is involved in leading clinical trials (see last ASCO) for some combo therapy.

            In my case, my oncologist recommended Dr. Lipson give the second opinion. So, when you have the info and Dr. Lipsons option, I would ask Dr Lipson who he recommends for a second opinion. And go to that person. And maybe check one from the list Celeste gives you too.

            I am just saying I have a very high regard for Dr. Lipson. You should still get a second (third) opinion if you are stuck or have an unclear decision. But he’s great! (And I need to thank him)

            best wishes Mark

            Mark_DC
            Participant
              PS I am/was NRAS too.
          Viewing 2 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.