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Stage IIIC need advice please

Forums Cutaneous Melanoma Community Stage IIIC need advice please

  • Post
    jc2dad
    Participant
      5 nodes removed with primary tumor on August 7th. Primary was subungual on left middle finger. Amputation at middle knuckle. Tumor was ulcerated 7mm. Took 3 nodes from arm pit and 2 from near elbow. 2 of 3 from arm pit positive, both in elbow positive. One in armpit was a little over 1 mm tumor but capsulated.

      Receiving all services at MD Anderson. I meet with oncologist, surgeon and team on the 25th to discuss removal of more nodes and treatment optioms.

      BRAF V600 negative, MRI and CTs negative, no PET conducted.

      Any advice on different options and pros and cons would be very appreciative. The nodes by the elbow showed very light cancer with 50 and 25 cells respectively.

      Is wait and watch a good approach, should I have CLND if suggested, what targeted therapies are available?

      Thanks in advance.

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    • Replies
        liberty04281
        Participant
          Wait and watch is not a good option.
          It is just matter of time when the cancer will appear somewhere else in the body.
          You need immunotherapy.
          Good Luck!
          Raegen
          Participant

            Wait and watch is a terrible approach. Request to have your blood tested for circulating tumour DNA to help inform your treatment options. The tests take 8-12 weeks to come back right now at U of M. There are only 4-5 biochemical pathways that your melanoma can mutate through and learning which pathway needs to be shut down is critical in melanoma. if they know which pathways are affected, then it is much easier to select a checkpoint inhibitor that is right for you. 

             

            There is also genetic testing available at U of M now which can at least tell you if you have any of the major melanoma genes. It's still a matter of controlling whichever pathway is going haywire, but it's much easier to target the checkpoint inhibitor if you know what is going on. Education is everything. 

             

            I highly recommend enrolling in a clinical trial; it has made a huge difference in my quality of life..

             

            Raegen

            sister of patient
            Participant

              Hi – Glad you posted to let us know how you're doing – I'm so sorry to hear they had to take alot of that finger, though with the history you gave us before, I guess it wasn't surprising for you – and at least you aren't dealing now with the pain that caused. Am sorry also that you're at stage 3c!!! It's great the scans are clear though!!

              If I were in your shoes now, 'watch and wait' would be out of the question – I would want the immunotherapy (ipi) that is given as adjuvant treatment for stage 3. If you do a little search on here, you'll see that there are many people undergoing this therapy right now.

              Doing a CLND is a debatable issue now (I believe – forgive me if I'm wrong because I haven't studied the issue – just a recent new discussion) following the premise that the immunotherapy will go after any remaining cells in the lymphs.

              There's many on here also attending MD Anderson with great things to say about the facility and its professionals, so it sounds like you're (finally) in good hands. 

              So again, if immunotherapy is offered (and I'm pretty sure it will be), I'd take it if it was me … and hopefully that will be the last treatment you will ever require!!

              Please let us know how you make out. Wishing you the best always!!

              Barb 

                jc2dad
                Participant
                  Thanks Barb. Getting use to the finger being gone but it is definitely going to take some time. The CLND scares me a bit to be honest. My gut is telling me to do the drug cocktail and maybe some targeted radiation on my lymphnodes. Some low dose radiation in conjunction with the immunotherapy was suggested as a strategy. I like to be proactive. The genetic testing and blood testing mentioned above is definitely interesting and will bring this up with my care team.

                  I appreciate everyone’s comments and advise and wish you all well in this battle. The biggest kick to the gut I have come to realize is unfortunately melanoma is not just a one and done deal and quite possibly is something that is will be battling for quite sometime. I have met many many folks at MD who were stage 2 and 3 only to later develop to stage 4. Many of them also have had multiple bouts of being stage 4 then NED followed by a return or new tumor.

                ed williams
                Participant

                  Hi jc2dad, this has been a very interesting post so far with many varied suggestion. I will assume that your team at MD Anderson have staged you already and I am curious did they say 3b or 3c. There was some data out in June about the benefits of CLND from the MSLT-11 study, here is a link if you are interested http://www.nejm.org/doi/full/10.1056/NEJMoa1613210   . I also have a link to an Onclive video from 3 months ago talking about adjuvant melanoma options and it features Michael Davies of MD Anderson.  ttps://www.youtube.com/watch?v=7BIXL2A1EKc  . Davies is leaning towards getting into clinical trials at this point which makes a lot of sense from an access to the best new drugs and close follow up and scans!!! Best Wishes with a tough decision!!!Ed

                    jc2dad
                    Participant
                      Thanks for the links. Yes they said I am staged at 3c for now. No distant metastasis, but the lymphnodes in the arm (elbow region) and underarm tested positive. One in the axillary region was actually large enough that the report called it a tumor. A little larger than 1mm. No fingers as all seem capsulated at this point which is a good sign and my LDH levels are on the high side of the normal range, but still normal. Friday I meet with my care team to finalize an option. I think I am looking at doing immunotherapy with targeted drug and small dose of radiation in the remaining nodes. Gut is telling me not to do the CLND…but will take the suggestions of my Dr.s. Thanks again for the links. I will definitely check them out.
                    cancersnewnormal
                    Participant

                      I have always tended to skew very aggressive with attacking melanoma, so take this for what it's worth from my personal perspective…….. I would not watch and wait. Your body has already shown that there was spread via the lymphatic system, and it cannot be ruled out that it is already in the blood. You may very well be clean and clear at this point. Buuuuuut… as one who learned that she'd advanced to stage IV via a grand mal seizure (mets to the brain) … I'm a little jumpy about left over micro-bits and pieces. Melanoma doesn't play nice. Yervoy is already an adjuvant option for stage III. Being treated at MD Anderson, I'm guessing there's a pretty strong shot at finding a possible PD1 trial you could shoot for as well. A trial option may answer your question regarding whether or not CLND should be considered… depending on what pre-trial treatments have already been done/not done, and what the ideal trial candidate looks like. If immunotheraputic drugs are going to be effective for you… they'll be effective both inside and outside the lymph nodes. You're in a solid treatment facility full of brainiacs who have access to more options than most other places. Drill them with questions, and make them use those well oiled minds! : )  It all comes down to possible positives of each option, versus the possible negatives of each, and what will make YOU the most comfortable.

                        jc2dad
                        Participant
                          Thanks Niki. I tend to think like you with regards to being aggressive. I also like to trust my gut. It has kept me alive in situations I should not have survived before. I wish you the best in your battle.
                          cancersnewnormal
                          Participant

                            Gut survival instincts, and doc's willing to be as aggressive as you…. it's win win! I'm here and clear 4 years and 4 months post stage IV diagnosis, because I landed in the hands of 2 docs who were willing to push the boundaries. Dr Eric Chang… formerly at MD Anderson, but now at USC… and Dr. Michael Wong… formerly at USC, but now at MD Anderson. HA! Neither one of them has ego enough to ever admit it, but they're heroes, and I owe them my life. I once saw a quote: "You can't do epic sh** with basic people". MD Anderson manages to do some pretty epic sh**. You got this.  : )

                            jc2dad
                            Participant
                              Niki, Dr. Michael Wong is my onco.
                              cancersnewnormal
                              Participant

                                You lucky bastard. ; )  ha ha ha! The man never stops thinking. His patients are always in his mind when he is speaking with other oncologists/researchers/labs about current or upcoming new ideas and approaches. He genuinely cares about helping people, he's really bright, and he's also got a great sense of humor! Aggressive in his approach to beating this crap, but not so much so that he would ever leap without looking. He's the perfect blend of brains and bedside manner. I love him more than he loves donuts! Ha ha ha! Pass along my most sincere kick in the shins to him. : )  Hang strong in your battle… you've already made it over some big hurdles… the worst may already be behind you. : )

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