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Seeking Celeste Or Ed
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Seeking Celeste Or Ed

› Forums › General Melanoma Community › Seeking Celeste Or Ed

  • Post
    • July 19, 2019 at 11:18 am
    Jewel
    Participant
      Hello Celeste,
      We have talked a few times in the past and I’ve always admired your drive to find the latest and greatest in the world of Melanoma. I was hoping to get your 2 cents on my husband’s recent reccurance. Ken was originally diagnosed with melanoma on his L calf in Nov 2010. Recurrance in L inguinal nodes 3/19 positive Sept 2011. Went to Sloan to try to get into trial no luck. Went until Aug 2014 until recurrance in L Illiac nodes 2 positive Started Yervoy Nov 2014 3mg ended in Feb 2015 thankfully minimum side effects. We totally thought we might have had this kicked when a recent scan showed a Lymph node lite up in his R inguinal nodes. Biopsy confirmed Melanoma. Totally crushed. Pet Scan scheduled next week. Appointment with Surgeon scheduled after that. Ken does not want a full lymph node dissection done this time due to mild lymphedema. Just wants affected node taken out. They are going to test for the Braf gene as well. They are talking about the Yervoy/Nivo combo for Ken. Obviously are heads are spinning and I know you don’t have a magic ball but I would love your opinion. They have also talked the possibility of radiation since all of Ken’s melanoma has been in his Lymph nodes. I heard they can give you a dose of radiation while your in surgery? Oh I almost forgot in the last year and a half he was also diagnosed with TWO other cancers prostate/bladder. Thankfully NED at the moment. Needless to say we’ve been busy. Would love your thoughts. Thank you so much

      Jewel & Ken

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        • July 19, 2019 at 1:33 pm
        Bubbles
        Participant
          Sorry you are dealing with all of this Jewel and Ken. I put together a primer a bit ago about melanoma treatments and it still holds for the current FDA approved standard of care treatments and explains a lot of what I would be thinking about if I were in your shoes: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Tumor testing for genetic mutations is important. BRAF status will determine whether targeted therapy is an option, so that is a must do and really should have been done on his prior tumors – you can check and see if they did it. But given any melanoma patient who has progressed on or after standard treatment…and even more so given Ken’s development of additional cancers….tumor testing for even more unusual mutations would be super important. For instance, Maureen’s husband (of this board) is being successfully treated for his melanoma, after finding no positive results from standard remedies, with a drug usually used for HER-2 breast cancer: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/excellent-scans-breast-cancer#comment-126921

          Given that Ken’s tumor is in an isolated node, he sounds like an excellent candidate for an intralesional (or intra-tumoral injection ) treatment. They are covered in my “primer”. The patient must have a tumor that is accessible for injection and it sounds as though he does. There are several different types and we have learned that they work best when combined with a systemic therapy like nivolumab (Opdivo) or pembrolizumab (Keytruda). There are a growing number on this board who have done well with them. Just below your post is the latest example: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/good-results-intralesional Here are a ton of reports that I have put together re intralesionals from my blog: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/12/reports-on-intralesionals-for-melanoma.html

          Radiation is a very good option for localized melanoma when combined with immunotherapy. So that may be a good way to go. That is covered in the primer, but here are lots of additional reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

          The ipi/nivo combo is a good idea as well. It has the highest response rates going among immunotherapy. It could also be combined with radiation so that would certainly be something to consider.

          Beyond those more “approved and usual” approaches there were these out of ASCO this year: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-stuff-treatment-options-and-current.html

          Things like TIL and IL2 are out there as well. However, I would probably be looking at some of the options above as first line choices. However, it never hurts to discuss all potential treatments with your doc. Hope this helps. The search bubble here and on my blog are very helpful. Melanoma sucks great big green stinky hairy wizard balls, but there is hope!!! Hang in there. Ask more questions should you have the need and I’m sure the Edster will chime in with an appropriate vid or three. I wish you both my best. Celeste

            • July 20, 2019 at 12:21 am
            Jewel
            Participant
              Celeste,
              I can’t thank you enough for your quick response. You certainly have armed us with a bunch of data. We will sit down and read all of it. Ken actually was tested for the Braf gene in 2011 and he was positive. They still want to test him. Our Urologist like you has almost mentioned trying to do testing on all his cancers to see if they carry a similar gene. So I was going to suggest that also. Obviously the results from the Pet Scan will also play a factor. Lots of homework to do.

              Thanks again Celeste
              Jewel & Ken

            • July 19, 2019 at 3:33 pm
            ed williams
            Participant
              Hi Jewel, just to add a couple of ideas to what Celeste has already provided to you as well as a couple of links that talk about what is happening in the research. My first thought is how they categorize Ken based on response to ipi followed by relapse with a lot of time passing. One of the big ideas that major centers are looking at is neo adjuvant trials where they give drug before surgery to see if drug has helped to get t-cells into the tumor. They can do that if surgery is planned a few weeks after starting immunotherapy drugs, this helps to give oncologist data that can help them make informed decisions. If tumor is taken out and t-cells are present then continue with the ipi+nivo plan, if tumor is cold not showing response to immunotherapy then maybe other ideas should be explored. A lot will depend on the amount of tumor as well as if there are other locations, that information will come with Pet-ct. The first video link talks about what you would do if patient failed ipi+nivo and are Braf negative ( so targeted therapy not an option). Other videos get into other clinical trials and ideas including radiation which Celeste talked about and injectables and NKTR-214 a pegylated IL-2 drugs combined with Nivo. Best Wishes!!!Ed https://www.youtube.com/watch?v=J-19Vk_kA0k https://www.youtube.com/watch?v=Qc1D2nKcbJg https://www.youtube.com/watch?v=QLF8RJgd2Y4
                • July 19, 2019 at 4:14 pm
                ed williams
                Participant
                  Here are a couple of articles talking about the results in the neoadjuvant trials of using low dose Ipi at 1mg/kg + Nivo at 3mg/kg having the same kind of results as normal dose ipi of 3mg/kg+ nivo. Video link at 4:00min mark talks about findings from Amsterdam trial, the oncologist is a bit of a character. I am sure that at Memorial Sloan Kettering this kind of approach might be considered as an option. https://www.ascopost.com/issues/november-25-2018/neoadjuvant-therapy-with-reduced-dose-immunotherapy-for-stage-iii-melanoma/ https://www.youtube.com/watch?time_continue=14&v=SwTzupFaN88
                  • July 20, 2019 at 12:33 am
                  Jewel
                  Participant
                    Hi Ed, thank you so much for your response. To answer your question about how they categorize Ken, I’m sorry I’m not sure what your asking. Because Ken had a 4 year remission with Yervoy they thought the combo might be a good treatment for Ken. Since Kens melanoma has always been only in his nodes they have taken them out. My husband wants this node out as well. He doesn’t feel comfortable knowing it’s there. Since 2010 we have been NED 7 years of that with surgeries and Yervoy. The Doc also mentioned radiation with the combo. In 2011 Ken was tested for the Braf gene which he carries, but they still want to retest him. So hopefully we have Targeted treatments if we ever need them in the future. A lot to think about. We have A lot of studying to do. Again thank you so much for everything.

                    Jewel & Ken

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