Home Forums Newly Diagnosed Stage III/IV Just returning from cancer center– help

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    Hello all,

    I have posted here before and really appreciate all of the response and advice we have received..I am posting again because I feel like we are starting to get a grasp (if that is possible) on this crazy melanoma world. When you are thrown in.. It takes time to grasp all of the terminology, and take an understanding of our own unique case as we have come to see–every case is different. My husband has asked me to repost his questions specifically so if they are redundant please bare with me:

    Overview of our diagnosis: we first noticed a cyst like growth on the clavicle area , base of the neck, in September 2013. It was thought to be a sebaceous cyst by our plastic surgeon. It was removed in December 2013. It was a 9mm amelonotic Nodular melanoma located in the dermis which path thought to be a metastasis. Of course, we went searching for a primary site. No other melanoma could be found. In December 2013 we had a wide local excision of this area with sentinel node biopsy (sentinel node was found to be on the opposite side of the tumor). At that time the margins were clear as was the lymph node. PET and CT scans showed no evidence of disease. We followed up in April 2014, (3 month check) with another negative CT scan but noticed that a spot had changed on the edge of the WLE scar. After a dermatological biopsy, the spot was found to be the same. Melanoma in the dermis and metastasis. To date no primary has been found. The biopsy from the 2nd spot was read with clean margins. After reaching out to the melanoma international forum, we were advised to go to a center that specializes in melanoma. We spent May 13-20th at M.D. Anderson. The results of ultrasound, CT, PET, MRI show no evidence of metastasis. They have recommended another wide local excision of the area with possible skin graft. And perhaps local radiation depending on the path findings. (MDA wanted our original slides and tumor for their own path to review) We are BRAF positive. The general consensus is that the primary was probably attacked by his own immune system and likely won’t be found. We understood the medical oncologist’s reasoning that because the 2 tumors were found in the dermal region-it would have traveled from another source. Because of the size of the Nodular tumor and the recent recurrence we have been staged as a 3b or 3c. (Stage 3, tx, n2c) or perhaps a stage IV if the primary site was distant and that we do not know. We all agree on additional surgery with or without radiation. It is our understanding that we have 3 systemic options: ECOG 1609 (interferon vs ipi) or the combi-ad (BRAF inhibitor) trials or watch and wait.

    Questions for the forum: (please excuse if we are asking the same question, as we are trying to still understand all of this)

    1. Would doing Yervoy (ipi) and waiting on the BRAF inhibitor make sense at this time: our reason for asking is that we are getting differing opinions. One says do the BRAF inhibitor because the success rate is higher. Other says that it is only a temporary fix and we should save this for later should another tumor show up? (We understood that the melanoma becomes resistent at some point to the BRAF inhibitor) Please clarify if we have misunderstood..

    2. This seems like a crazy question– but does the watch and wait make sense? Our doctor said that there could be a chance that we totally cancer free.

    3. We are hesitant about doing any radiation because of the potential complications and the fact that it doesn’t really effect survival rate. And that doing radiation may preempt us from future clinical trials.. Thought?

    4. Does participating in the ECOG-1609 or the Combi-Ad effect our ability to do the anti PD-1 extended trial?

    5. We have heard that preliminary results on the ECOG study should be released on June 2 at the big cancer meeting in Chicago. So, what does that mean to us? Would we be able to go to our insurance company with a case (pending good results from study) and get ipi without going into a trial?

    6. Since we have been stages somewhere between a stage 3 and a stage IV — is there anything that we should try without going into a trial?

    7. Is there any data on the known side effects of ipi? And, any data on whether ipi has the potential for melanoma resistance if taken too early?

    8. Does taking Yervoy eliminate us from MK3475 EAP?

    9. Do we qualify now for MK 3475-EAP? If so, who is offering the trial?

    10. Is there any of the other treatments that would keep us out of MK-3475 EAP?

    11. We have read that some people leave melanomas in place to monitor the success of drug therapy. Can you explain?

    Thank you ALL for your support and advice. It makes a huge difference.


    Catherine Poole

    I think that your questions really need to be addressed by your current doctor. At stage 3b or 3c you would not be eligible for Yervoy or the Braf inhibitors. If NED, watch and wait is the best way to go until some good clinical trials are developed.


    Hi there,

    I wonder if you would be eligible for the recent Expanded Access Program by BMS for their Nivolumab melanoma drug.


    All the best,


    Catherine Poole

    You must fail IPI (yervoy) and a braf inhibitor to be able to access the EAP for Nivo or Merck PD1. You must also be stage IV.

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