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Any experience with clinical trial of alectinib for ALK-positive melanoma?

Forums General Melanoma Community Any experience with clinical trial of alectinib for ALK-positive melanoma?

  • Post
    TarlieT
    Participant
      Hi all – I am currently receiving ipi/nivo for unresectable Stage IV, but just found out from mutational analysis that my tumors are ALK-positive. Apparently there is an ongoing basket trial to allow ALK-positive patients with a range of types of cancer to receive alectinib (Alecensa), a targeted therapy that’s historically been used for ALK-positive non-small cell lung cancer (NSCLC) patients. Here’s the clinical trial page–it’s Phase IIa, they’re recruiting through 9/30/2020, and it’s not just alectinib that they’re testing.

      From what I’ve read, alectinib has been pretty effective in the NSCLC patients who’ve received it, and the side effect profile isn’t horrible. But I guess it’s not clear how this will translate to other types of cancer. Is there anyone else who has experience with this trial? I’m curious to hear personal experiences, particularly after having been hit hard by the side effects of ipi/nivo…

      Warm wishes to all,
      Tarlie

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    • Replies
        gopher38
        Participant
          Hello Tarlie,

          If you were trying to link to the file, I don’t think it worked. Might want to paste it in again. Lots of knowledgeable people here (yours truly excepted), so one of them might know something. Welcome aboard. I’m currently doing ipi/nivo also and keeping my eyes open for trials.

          Warren

            TarlieT
            Participant
              Hi Warren–thank you so much for catching that. Here is the link: https://clinicaltrials.gov/ct2/show/NCT02091141

              I just heard from my team that the latest scans show continued growth–so they’re strongly advocating for switching from ipi/nivo to alectinib via the clinical trial. Fingers crossed that this option works out better. It would still be wonderful to hear from anyone with relevant experience.

              Warren, I hope ipi/nivo is treating you well. It is an incredible therapy for many, side effects notwithstanding. Re clinical trials (and if relevant), have you had mutational analysis done on any tumors?

              gopher38
              Participant
                I have scans coming up soon, so then I’ll see if this is helping or not. I guess I’m a little pessimistic since Nivo alone didn’t do it, but we’ll see. I do know that I’m BRAF+, but I don’t know the specific variety of BRAF+, nor any other mutations. Maybe I’ll ask about this one. Sounds like the trial is a good option. At the very least, I think there’s some additional attention paid to you, which is a good thing. Let’s see if anyone has any experience with this.
                TarlieT
                Participant
                  My fingers are crossed for you regarding the scans! I am in the same boat–“failed” on nivo and then shifted to ipi/nivo. But there do seem to be people who benefit from ipi/nivo even though nivo didn’t do the trick, so I’m optimistic for you.

                  I’m not sure how common this is, but I believe my team at Sloan Kettering did a complete genotyping of one of my tumors, which is how we found out it was ALK-positive. Then their system screened for any open clinical trials that might correspond to my specific mutational details, which is how they matched me with this trial. It might be worth investigating whether something like that could be an option–and/or whether there are any BRAF-specific therapies that might make sense for you.

                  Yes, hoping someone else has some insight as well.

                ed williams
                Participant
                  Hi Tarlie, there have been in the past a few folks who have used programs like Tapur or Foundation one to find out if they qualify for approved cancer treatments from other cancer types. The topic hasn’t come in is some time you would have to probably go back a year or two to find people talking about using genetic test to find other treatments. Here are a couple of links to the programs I brought up before and I had a thought since you say your at MSK and they seem to be at the cutting edge of things, have they looked at the tumor to see if TIL’s are getting into the tumor. This seems to be the new direction in trying to figure out which drug is best suited based on the tumor being classed cold or hot, based on Til’s and where they are located. Best Wishes!!!Ed https://www.businesswire.com/news/home/20171130006320/en/ https://www.tapur.org/news
                    TarlieT
                    Participant
                      Thank you very much for these ideas, Ed! I hadn’t heard of Tapur and FoundationOne before, so those are great to know about. And great thought about checking whether I have TILs getting in…I will ask them at the next appointment if that’s something they can or have looked at with my tumor. I hadn’t heard of that hot/cold distinction before. Thanks for your help!

                      Yes, I’m so grateful to be at MSK–they have been truly fantastic at every turn.

                      Hoping you’re well,
                      Tarlie

                      ed williams
                      Participant
                        The video link that follows explains hot vs cold and also uses the term T-cell infiltrate to explain T-cell getting into the tumor. If you look at 3 different areas of the video you should get a good idea of the concept, first 13:32 min mark , second point is 24:00 min mark and finally at 25:30 min mark and probably the best part of the video and goes into detail of how Oncologist are trying to get responses with cold tumors and the type of treatments that they think will work for those patients. Really important that you are at a research hospital that can do these advanced testing on tumor pathology slides to see staining for Pd-L1 and t-cell levels. Dr. Omid Hamid of the Angeles Clinic of LA is the person speaking in the video and is a world leading expert in melanoma. https://www.youtube.com/watch?v=FtQJQhQE3dQ
                        sks2019
                        Participant
                          Ed, Thank you for always answering with your research backed approach. My oncologist is a man of few words and doesnt explains much unless asked. After reading your comments above I am wondering how to find if the TIL’s are getting into the tumor ? My mom’s liver tumor went from 1 cm ( in september) to 7 cm ( Janauray) after starting the ipi/nivo. I am just thinking if we should be hopeful that she might see a late response to the ipi/nivo. or if the size increase is a infiltration of the Tcells
                          ed williams
                          Participant
                            My understanding of the process is you need a biopsy then tissue staining to see how many CD8 cells are present and where they are located, sometimes you have lots of TIL’s (CD8) cells at edge of tumor and the question is what drug will help to get the cell to enter the tumor while others have CD8 cells in the tumor and they describe the situation as a hot tumor that should respond to Pd-1 drugs. Dr. Omid Hamid gets into the various situation in great detail at the 25:30 min mark of the video. Best Wishes!!! Ed
                            ed williams
                            Participant
                              Not trying to get into the weeds but the best explanation of the topic came from Dr. Jason Luke on Research to Practice web site which you would have to join, no cost or spam, but link following gets into the detail that can be a little hard to follow but at 4min mark and 12 min mark and again at 18min area you get into how tumors can be classified based on Pd-L1 status as well as CD8 cell levels as well as things like interferon gamma and levels in cells. Hope you find link helpful. Ed http://www.researchtopractice.com/ImmunotherapyInterviews118/Video?playlistIndex=0#t=4m4s
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