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.

Progression to stage 4 with single liver met – second opinion?

Forums General Melanoma Community Progression to stage 4 with single liver met – second opinion?

  • Post
    MelWave
    Participant
      Hello everyone,

      I am a longtime lurker, so I kind of feel I know everyone here but of course you don’t know me. My husband was diagnosed with stage 3a melanoma in 2018. He was treated with adjuvant pembrolizumab for 5 months, after which his treatment was stopped due to nephritis (kidney inflammation). Just yesterday it was confirmed (via a Pet CT and an MRI scan) that his melanoma has spread to his liver with a single 8mm deposit. So he is now stage 4.He has no detectable disease anywhere else. We are both in our thirties with two young kids living in London. And we are desperately trying to find the best treatment, and it is not completely clear to me which path to take.

      His doctors are proposing the ipi/nivo combo and resection/radiotherapy after the combo part is finished in case the tumor is not eliminated after the combo phase, then nivo maintenance. They initially considered doing radiotherapy before the combo, but the radiologist felt that this is too dangerous because of liver toxity. They also discussed surgical resection, but advised against because they felt that delaying the ipi/nivo treatment is not advisable.

      My dilemma is that I have read studies that show that resection of solitary metastasis can be beneficial in terms of survival. (I do recognise that these studies are of very limited quality because of the small number of participants – it is rare to have resectable solitary metastasis, especially of liver for melanoma).

      Plainly speaking, It was my impression that resectable disease is usually resected – or maybe the practice has changed?

      What I am scared of is that Ipi/Nivo will cause liver toxity without improving his situation but making resection impossible in the short term and in the meanwhile he will progress.

      On the other hand of course he might have more disease in his body which will develop while he is recovering from the op if we choose this route.

      In any case – we are looking for a second opinion in the US ASAP (my husband is originally from NYC) and I haven’t had any luck arranging it with Sloan Kettering who said it will take a month. We don’t have a month… If someone here has any advice about arranging a second opinion from a good oncologist, I would be extremely grateful. I am not sure whether I will have any luck just writing an email directly to the person or their secretary (and can you then suggest a name)?

    Viewing 2 reply threads
    • Replies
        Bubbles
        Participant
          I am sorry for what you and your husband are now dealing with.

          For what it’s worth, I would absolutely start the ipi/nivo combo followed by nivo as your docs suggest with absolutely no hesitation ASAP. Yes, there are risks to immunotherapy, but the risk of untreated Stage IV melanoma are far greater.

          Here are a zillion reports on the ipi/nivo combo if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=ipi/nivo&max-results=20&by-date=true

          Still, there is value in resection: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/07/cut-it-out-prolonged-overall-survival.html However, with metastasis, responses are always better when systemic therapy (like the immunotherapy your doc has proposed) along with the resection of the tumor. AND – because melanoma is always difficult…..as the end of the report above alludes to…..

          There is more and more evidence that – yes – while immunotherapy works best when there is a low tumor burden – there is increasing evidence that if that burden is low – starting systemic therapy while the tumor is IN PLACE (I know!!! It really goes against the grain!!!) the response is even better than when therapy is started after removal. That is termed “neo-adjuvant” therapy. Here are reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=neoadjuvant

          Here is a primer I put together on treatment generally that you may find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Apart from delaying treatment – which in melanoma world is NEVER good – a second opinion is often a good thing. Here is a list of melanoma experts I put together: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/internationally-renowned-melanoma.html I am partial to Jeff Weber. His contact info is in the post. He ran the phase 1 trial pf nivo I participated in as a Stage IV patient post brain and lung mets in 2010. I have never known him to fail to respond to a patient, nor blow smoke. I think you would find straight answers there. All the others listed are incredibly knowledgeable oncologists as well. Further, I would imagine that a simple phone or “zoom” discussion of your husband’s circumstance could be set up with most.

          I hope this helps and wish you my best. Celeste

            MelWave
            Participant
              Thank you for your response Celeste. I know of doctor Weber from your posts on this forum and your blog and he was my very first thought. I have contacted his secretary now and waiting to see if we can have a consultation shortly.

              Just to clarify of course it is clear to us that Ipi/Nivo therapy should happen in any case. The only question is the tumor should be resected first.

              I also thought of neo adjuvant trials pertaining to this situation, but I just don’t know if the results translate directly to liver metastasis. I hope Dr Weber will have some opinion if we manage to talk to him directly.

              Bubbles
              Participant
                I hear you! And you’re right to wonder about all that. I don’t have the specific answer you need. But, hopefully, you will find what is best for you and your husband. I am sorry you are having to deal with this at all. But, I am glad your are searching for information and asking ALL the questions!!!! Hopefully Weber or another expert will be able to reassure you as to the best direction to proceed. c
                Bubbles
                Participant
                  PS – I thought I had some reports on metastastectomy in process on my blog. So, I finished it up for you. – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/08/surgical-removal-of-lesions.html

                  I really do understand why you are confounded with your options!!! Still, as I wrote in the post – “Melanoma never makes things easy. If I found myself in this position now, I would probably opt to start systemic therapy. Follow-up fairly quickly with scans to see what is happening. If the tumor is growing, surgically remove it, and complete systemic therapy. If it is shrinking, watch while continuing therapy and remove the lesion surgically if systemic therapy cannot take care of it on its on. ”

                  But, that’s just me and we all have to do what we think is best for our situation. Do try to give Dr. Weber a call. I think you will feel better after seeking that consult, no matter what you decide. Yours, c

                  MelWave
                  Participant
                    You are brilliant as always, Celeste. Thanks for all you do, it really makes a difference.
                    Bubbles
                    Participant
                      I don’t know about that. Folks who know me well, would probably beg to differ!! However, I do have one other thought that I would discuss with the Wizard Weber were I in your shoes….

                      Ablation or radiation to the liver lesion. Followed by ipi/nivo. Now the lesion would have to be discrete and in a certain position for that to be workable. But, I would ask about it. There are many, many studies that show that the combination of radiation AND immunotherapy work better than either alone. Here’s a link to a few zillion – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

                      c

                      MelWave
                      Participant
                        Dear Celeste, I have contacted Dr Weber and he has just responded to my email, which is amazing in itself. Just makes me feel so much better emotionally after feeling very hopeless that I will succeed in reaching anyone before going through a slow bureaucratic machine. I guess it reasserts your high opinion of him as a human being.

                        He recommended biopsy as also suggested by Ed downthread followed by Ipi/Nivo. There is a technical difficulty because the lesion is very small but I will discuss this with our oncologist again. I don’t know how likely something like this is to be benign, unfortunately it is a question for radiologists who read the scan.

                        The oncologist did discuss radiation and they could do it technically but they felt the risk of liver toxity/damage is too great if we do it concurrently with Ipi/Nivo. So they plan to do it after the combo phase if the lesion does not respond.

                        In any case, being able to speak to him and the people here just made my day so much brighter. Maybe I will even get a full night sleep tonight (it is already evening here now)…

                        Bubbles
                        Participant
                          I’m so glad Weber reached back to you. He’s a good Wizard!! I’ve responded to Ed’s rec below. And yes!!! When one has a history of melanoma the knee jerk reaction is to assume any mass is melanoma. However, that is NOT always the case!! I assumed without it being written in your post that a biopsy had been done since the ipi/nivo combo was recommended. But Ed and Weber’s recommendation of biopsy is essential!! Get some rest! c
                          Mark_DC
                          Participant
                            Dear Mel,

                            I agree with Celeste and also what your doctors are proposing. The usual approach is to resect the tumour and then apply immunotherapy to prevent recurrence (adjuvant therapy). But then the immunotherapy does not know what to attack so may be less effective (this is my layman’s interpretation). A new alternative is to apply the immunotherapy first so it knows what to attack and then remove with surgery. This way the immunotherapy may be able to attack other micro stuff lying around but which cant be detected ( I think this is the logic). This is neo-adjuvant.

                            When my stage III kept recurring locally my oncologist gave up on surgery and put me on immunotherapy. Unfortunately it didnt work and one year later they were going to do surgery (which would be the neo adjuvant approach). But then we added TVEC and after a few months it started to work, So one year later surgery actually was not needed. Its a bit of a scary approach as you dont remove the tumour but monitor it. As long as it does not go out of control it could be superior I think, you just need to monitor closely and regularly.

                            I agree too with a second opinion, but ths approach makes sense
                            I am British (in London now for a few days) but treated and work in the USA. Is the NHS proposing this (would be great if true) or private medicine in the UK?
                            Good luck Mark

                            MelWave
                            Participant
                              Thanks Mark. I just received an advice from Dr Weber confirming that applying immunotherapy first is the way to go. I am hopeful that the neoadjuvant approach will be good in our case (much harder to check with the liver than in lymph node…)

                              It is all under the NHS, in Guy’s hospital. The hospital is actually brilliant. But we had a very very poor experience before, in a hospital under a different trust, with completely different standards of care, scan regimen etc. It just really varies, even inside London.

                              Evan2027
                              Participant
                                Hi MelWave,

                                This is similar to what occurred with my father, a liver met progression to stage IV. He was put on Nivo montherapy first which shrank the met slowly but then the melanoma started showing up as red spots on his left arm (origin was on his left thumb nail). He was immediately put on the combo therapy and had a very strong positive response, was able to have all four doses, but then developed colitis and had to stop immunotherapy while put on heavy steroids. Even though he had to stop after the four doses he was NED months after the last infusion. He was not put back on monotherapy nivo and 10 months after the last combo treatment eventually it came back to his lung. He was older, 74 years old, so I would hope your husband being younger would reduce the chance of bad side effects. The one thing i wish my father had done was push to go back on nivo after getting off of the steroids due to the colitis.

                                Best wishes and hugs from Virginia,
                                -Evan

                              ed williams
                              Participant
                                Hi Melwave, good discussion with many ideas all of which make sense if your husband has progressed to stage 4 with one very small tumor on the liver!!! My question to your oncology team would be what did the tumor biopsy say??? scans are great for detection and if a Pet-ct showed SUV uptake then you know it is active but active what. Was the tumor there on previous scans or is this the first time it showed up?? The neo adjuvant approach of giving ipi+nivo for one or two doses then doing surgery makes a lot of sense to me from a perspective of that you would know if the TIL’s cell were able to get into the tumor and if those T-cells were able to start working against the melanoma by killing the cancer cells. More information is always good and a consult with Dr. Weber or Dr. :Michael Postow also in NY would make a lot of sense. Good luck!!!Ed
                                  Bubbles
                                  Participant
                                    VERY good pioint, Edster!!!!!!!!!!!!!!! I made a presumption and in things as important as melanoma and immunotherapy – that should NOT be made!!! Lots of liver lesions are completely benign. Unbiopsied lesions of all stripes can show up on scans, but may NOT be melanoma. So, yes! A biopsy would be the first step indeed!!! That’s why you’re our mouse!!! c
                                    MelWave
                                    Participant
                                      Thanks, Ed. I just got an advice to biopsy as well. It can be technically tricky so we will see what the team in our hospital think…
                                      It is a new lesion, and from my understanding it is more dense than the liver tissue from the MRI results. So it is not a cyst or hematoma, and it is consistent with it being a metastasis. There are benign tumors that are like this and active on PET but the balance of probability is not in favor of it being benign. I wish it was though.
                                      poppymac
                                      Participant
                                        hi.i was told in jan 2019 after a pet scan that i had melanoma in appendix and bowel though small in both it turned out to be in neither
                                      JudiAU
                                      Participant
                                        Drugs are good. Resection is good. Radiation is good. All of them are better. If your husband doesn’t tolerate drugs then that is another matter. But many people DO tolerate the drugs.

                                        I’m pretty sure I would be (and was) given the same the treatment. Drugs first, bothersome brain met was resected, radiation, more drugs. The was a year ago and I am still kicking. Various hiccups along the way but I completed four combo treatments, and have no tumor burden right now.

                                    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.

                                    Popular Topics