Home Forums Melanoma Diagnosis: Stage IV NED no more

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  • #22213
    cheris
    Participant

    Hello, All,

    I got the results of my scans after having finished Ipi, unfortunately, a lymph node of concern showed up in my abdomen. It was disappointing after having two previous NED scans. The radiologist listed the node as being possible necrotic, but the onc thought it might be inflamed. They did think the Ipi shrunk the node. I’ll have scans again in two months and take it from there. Trying to stay positive. Blessings.

    Cheris

    #65712
    BNP68
    Participant

    Sorry to hear that Cheris. I know it will be hard but I think you have good reason to try and stay positive. One possible scenario may be that there was some mel cells in that node that weren’t visible previously but it’s now inflamed because ipi is helping to kill them off. Or maybe it’s just a simple inflamed node like your doc said. Let’s hope so. It’s going to be a long couple months I’m sure but I’m anticipating good news.

    Brian

    #65713
    cheris
    Participant

    Thank you, Brian, for your words of encouragement. I’m working to stay positive, but I’m scared.

    Cheris

    #65714
    RJoeyB
    Participant

    Cheris, what kind of scan was it? PET? CT? And where in the abdomen? Near the GI tract? Asking because I’ve dealt with a number of transient false positives over the years with stuff in my abdomen, especially in and around my small intestine lighting up on PET, and am wondering if maybe that’s a possibility with what you’re seeing, as Brian suggested. It can be discouraging and frustrating, especially waiting through it all, I know.

    Joe

    #65715
    Catherine Poole
    Keymaster

    Cheris, do you think you will be able to move onto a PD1 agent? That you would now qualify? I hope so. If this is true progression of disease, you should know that IPI does only have 20% plus or minus response and PD1 double that. What is your plan B?

    #65716
    cheris
    Participant

    I’m not sure where in the abdomen the node is. My husband and I were taken by surprise with this news. This was a CT scan, the next will be a PET to see what’s truly going on. I’m Braf pos. so I assumed I would have to us a Braf treatment before PD1. Thanks all.

    Cheris

    #65717
    Jonathan
    Participant

    Hi Chris,

    I understand your situation. I would press your oncologist about anti-PD1 options, both Merck’s and Bristol Myers’. For Merck, I do think you’re correct – since you’re BRAF positive, you’d have to take Veru before being able to qualify (very unfortunate). The question is, what’s the situation with Bristol Myers’ anti-PD1? I don’t think the same disqualification holds (may be wrong, but…). My understanding is it should be FDA approved or available in Expanded Access very soon, and might therefore be a good choice if you can figure out where (and when) to get it, even if it means one or two initial trips to a different location before it’s available nearby. They’re such good drugs, and apparently having a decent response to Ipi suggests a good response later to anti-PD1.

    Jonathan

    #65718
    Catherine Poole
    Keymaster

    Opdivo, the BMS PD1 is in expanded use with strict requirements, i.e. prior IPI and braf if eligible and no prior Pd1. It is my understanding however, that when it is approved, (soon we hope) it will be as a first line therapy. By then, the phase III data should be in for Merck, so it can also become a first line therapy. All a matter of frustrating time! But there is much motivation among these pharma so that may help push it. The PD1/IPI combo open access is recruiting but you must be IPI naive. No BRAF requirement either way with that. PDL is the other exciting molecule that Wolchok as mentioned as especially promising in a combo with PD1 (that will be the BMS Pd1 and Medimune PDL) and we shall see how that pans out. Stay tuned! You can find out more about the BMS trials at: http://www.bms.com/studyconnect/Pages/study_finder.aspx

    #65719
    Lesli
    Participant

    Hi Cheris,

    You and I started and ended our Ipi regimen within days of each other, as I recall. I had scans three weeks ago with a “stable or shrinking” report, although I did light up all over the show. I have been reminded by two melanoma specialists that they don’t consider the results of Ipi conclusive until 3 months after the Last infusion (I had been counting from the first), so I believe that you still have some time for the drug to do its work before making any conclusions.

    Both of these conversations with the Melanoma oncs have been very positive and encouraging. Something like, “well, this is a bonus! Just think, if this doesn’t work there’s always PD-1 and then plenty of other things in the pipeline that are looking very promising.” For someone with Stage 92 melanoma, I literally waltzed out of the office.

    Hang in there. I spend a few minutes every day sitting in traffic on my way to work visualizing those T Cells doing their magic and I’m convinced they are…….Leslie

    #65720

    Thanks to all who are attaching very informative articles on PD1 progress, ipi, LDH levels…I log on daily to keep informed on my husband’s behalf…he just had his 2nd ipi infusion with no side effects yet…holding our breath as it appears some of the effects are cumulative…he has been working and going on business trips so we are taking what we can get until perhaps fatigue, diarrhea or rash sets in…hoping that the lack of side effects do not reflect on how ipi is working…he is in a clinical study and is also taking Avastin with the ipi..no side effects from that drug either. He started the study on Oct 6 and we are going to one of the clinical centers offering the ipi/Nivo trial. We asked repeatedly (and I stress repeatedly!!) if he could go into that trial or somewhat similar (we were willing to travel!) and in early Oct, they told us there was nothing available like that for him even though the trial was listed as “accepting patients”..i was feeling so distrustful…It is hard to understand why they wouldn’t be able to give him the best drug available and instead go on something that is potentially only 20% effective…he is NED in his organs at this point and we are grateful for that but feel the PD1 is the best chance of keeping it that way. Finally, someone was able to say that there was a possibility of entrance in Nov but they didn’t recommend waiting 6 weeks and not starting ipi only to find out there is no spot for him. After scans in late Dec, we will see if ipi/Avastin combo is working and will certainly let forum know as it is another avenue to go if PD1 not available…

    #65721
    kylez
    Participant

    Good luck to your husband. And 20% with IPI ain’t nothing! My doctor believes I got a 2 1/2 year response to adjuvant IPI after surgery and radiation for multiple brain mets.

    In my search for clinical trials I learned that clinicaltrials.gov was a good source for trial locations and contacts. But it wasn’t useful at all for recruiting status. I spent a month or more calling the contacts — especially trying to reach the clinical trial coordinator at each site. They’re the ones that actually know the recruiting status and can be very informative. I came to rely only on direct conversation with the coordinators. I probably talked with at least 20 of them in my search.

    #65722
    Nancy Markle
    Participant

    I was diagnosed with Stage IV April 2012. It actually took a couple of weeks to determine if it was from my previous breast cancer, or melanoma 25 years prior. I was diagnosed with MELANOMA WITH +BRAF. From the liver, spleen and messantary, it wrapped around my colon. I was started on Zelboraf. I was placed on Hospice care with a month to live. My son’s were brought home and all of my family was here. Two months later (I asked for a scan) except for a few left in my liver, I was almost NED. Within months NED. That was 2 1/2 years ago. I’m on Zelboraf 1 tab twice a day. It’s not supposed to be effective that long. Does anyone know if it has been effective longer. It was just approved the year I started taking it.

    #65723
    Catherine Poole
    Keymaster

    Nancy that is an incredible story. I’m so happy to hear your results! Keep up the great health.

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