Wife has had 2 rounds of opdivo/yervoy now pleural effusion
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Wife has had 2 rounds of opdivo/yervoy now pleural effusion

› Forums › General Melanoma Community › Wife has had 2 rounds of opdivo/yervoy now pleural effusion

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    • July 6, 2019 at 12:46 pm
    BlindSquirl
    Participant
    Hello everyone, I’ve poured through these forums & want to thank everyone, this has made us both more informed & a little less panicky with recent developments. I’d have gone crazy if I had to rely on the doctors for info.
    Long story short, my wife was diagnosed 3C a little over a year ago.

    Tumor on her left forearm. Sentinel lymph node biopsy showed a 3mm tumor in her left armpit. Referred to Rogal Cancer center at Univ of Michigan. CT scans of abdomen & chest, MRI of skull, all clear. Told by oncological surgeon “careful monitoring”, come back in 4 months.

    At 3-1/2 months tumor started to grow in left arm pit. By the time we could get back to U of M, it was the size of a grapefruit. U of M ordered scans & scheduled surgery. Scans showed her virtually riddled with cancer. Surgeon canceled surgery, said it wouldnt help & left us hanging.

    Started IV vitamin C at a local clinic that had strongly advised us to contact MD Anderson. Early January admitted to local hospital for jaundice. Met with local oncologist & heard about BRAF mutation for 1st time. Discovered that U of M had done BRAF test back in November but sat on the positive results.

    Transfered to Spectrum Butterworth hospital in Grand Rapids, MI because Melanoma Specialist Dr Chen had Braftovi & Mektovi samples in his desk.

    Miraculous recovery, 3 months later all mets gone (including skull & spine) except for liver & spleen.

    Blood work returned to normal & she even started having menstrual cycles again.

    6 weeks ago, 3 items in blood work were slightly elevated & Dr Chen pulled scheduled scans ahead & found liver & spleen mets growing again.

    Switched to opdivo/yervoy once every 3 weeks. 1st treatment felt like she “got hit by a truck” but by week 3 was almost feeling normal again and she could tell the new mets in her left arm pit felt smaller.

    Also pursuing salicinium treatments at local clinic (have advised Dr Chen, who thinks it’s a waste of time but says won’t interfere with ipi/novo)

    2nd ipi/nivo treatment last Friday. Admitted to local hospital on Wednesday after BP of 168/104 & xrays showed pleural effusion. Drained almost a liter of beer colored fluid, dr said there was definitely protein but no apparent blood.

    Transferred from holland hospital back to Butterworth again yesterday. Dr Chen is out of town for holiday weekend but is still supervising her treatment. Said at 1st he suspected the mel was the cause but as he looked further & got more info, he’s leaning more towards side effects.

    Virtually every doctor has said that 2 ipi/nivo treatments aren’t enough to have an effect but the mets under her arm continue to shrink.

    CT scans & MRI last night, waiting for results.

    Hoping they’ll start steroids for side effects soon.

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      • July 6, 2019 at 3:23 pm
      Bubbles
      Participant
      Sorry for all that you and your wife are having to endure. Yes, your wife may need to be treated with steroids. But, we have learned quite a lot about the ipi/nivo combo. We know that ipi (Yervoy) is the bad boy of side effects in the combo. So much so that most patients are not able to tolerate all of the recommended doses of the combo. Here is a report related to that: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html
      Still, we also know that despite side effects to the combo, most patients CAN go on to tolerate nivo (Opdivo) as a single agent. Further, we know there is a great deal of variation in response times. This graph may interest you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html Here you can see as I noted that ” Median time to response for both is roughly three months (or approximately 10-12 weeks). Duration of response in these patient is not yet reached. Roughly 80% of those responding have an ongoing response in both groups. 68% of those who had to discontinue the combo had a complete or partial response…..a very good thing!!! There are documented outliers who responded at anywhere from 6 to 10 months.”

      Hope that helps and your wife is doing much better very soon! Celeste

        • July 6, 2019 at 3:51 pm
        BlindSquirl
        Participant
        Thank you Celeste

        I’ve quoted quite a few of your posts to my wife.

        With my layman’s understanding of those 2 reports, it looks like getting the 1st 2 rounds of ipi/nivo then switching to nivo alone were almost as effective as getting the entire regimen?

        I’m still curious about the shrinking mets in her arm pit after the 1st treatment.

        She completely changed her diet just before starting ipi/nivo, mostly veggies (organic when possible) a little fruit, as a treat and occasionally, clean animal protein, i.e.organic eggs, grass-fed lamb, wild caught smaller fish (nothing from the top of the foodchain like tuna or swordfish), as little processed food as possible.

        • July 6, 2019 at 6:32 pm
        Bubbles
        Participant
        You are correct in your interpretation of that data. As to her rapid response….YAY!!! In my study, begun in 2010 with nivo only, there was one rattie who was noted to have “progressed” on his first 3 month scans….leading to his removal from the trial. However, WITH NO ADDITIONAL TREATMENT, follow-up scans showed the tumor shrink, then disappear completely, and stay gone for YEARS!!!! So, response times vary a great deal, though responses to immunotherapy generally fall as indicated in the graph I shared.

        As to diet…there are only a zillion threads on this topic on this forum and plenty of data regarding the same on my blog. Use the search bubble on both if you are interested. A healthy diet is best for everyone. A diet low in fats, low in chemicals found in poor polluted fish (or other beasts) and processed foods is always good. However, there is no scientific data that shows much of anything diet wise being of benefit to melanoma patients other than a few things on curcumin (the stuff that makes mustard and curry yellow), coffee and tea, vitamin D and the benefit of a good gut biome fostered by plenty of fiber and active cultures from things like yogurt, kimchi, kefir, and sauerkraut (NOT probiotics from a bottle). I have reported the data on all of these. NEVER have I seen anything that indicates benefit from limiting the consumption of an apple, banana or orange. But, these are personal decisions, so your wife needs to do what she feels is best for her.

        Hope this has helped. c

        • July 6, 2019 at 6:40 pm
        BlindSquirl
        Participant
        Thank you.

        She’s been pretty good about eating the “powerkraut” I make for her. Organic, raw and inocculatent with broad spectrum probiotics in 1 quart batches. The oncologists staff has commented every time on how good her immune system was doing. Apparently even the Braftovi/Maktovi combo usually does a number on immune system.

        I’m with her now & she’s miserable, retaining fluid,still waiting to hear about the MRI & thoracentisis.

      • July 6, 2019 at 6:26 pm
      Edwin
      Participant
      I noticed some improvement before my 2nd ipi + nivo infusion. However, I received my 2nd infusion of ipi + nivo 9 weeks after the 1st. My oncologist reduced my dose of ipi by 50% and I was able to receive the remaining 3 ipi + nivo infusions.
        • July 6, 2019 at 6:46 pm
        BlindSquirl
        Participant
        Dr Chen has been pretty on top of things so let’s hope he considers a longer period between dose 2 & 3.
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