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Seriously Confused Need some assistance and optimism

Forums General Melanoma Community Seriously Confused Need some assistance and optimism

  • Post
    THMoore
    Participant
    Just 3 months ago, I had my quarterly scans completed. Results were as follows:

    5 nodes in my Neck are clear, Brain is clear,  3 inch Liver tumor is completely clear ( Prays GOD ) but the nodes in my lungs have grown too 6MM and we’re active on a PET.  The doctor was highly surprised but confused about my lungs.

    The oncologist was thinking and hoping the growth of the lung nodules is due to inflammation.

    So I got my last scans a week ago, and 3 of the nodules had grown again to 9MM and 1 to 15 MM.   I had a lung biopsy and it was positive.

    I haven’t seen the oncologist yet just the PA. He explained they were looking at a trial with IL2 and Opdivo.  He also mentioned, since I had dropped weight,  he said I probably had between 3 and 6 months left of life.

    I have had almost every side effect there is. Colitis, arthritis, dermatitis, severe fatigue blah blah blah.  All my blood work has been normal the entire time.

    My question is , is this it? I am not a V600.  I am a incomplete quadriplegic as most of the know.

    please give me your thoughts and recommendations. Im a little down right now.

    Angel Hugs and Kisses to all warriors,

    Trent

    my question

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  • Replies
      ed williams
      Participant
      Hi Trent, the IL2 could be the NKTR-214 version from Nektar pharmaceuticals which has been in development for the last few years and trials are being run at MD Anderson. Data looks pretty good, also something to bring up as an option down the road could be Lag-3 +Nivo which is close to approval and has been tested and worked in patient’s who had progressed on immunotherapy in the past and could be given off label once approved. MD Anderson also has a TIL’s program worth asking about, with LN-144 being considered by FDA for approval and it showed really good #’s in patient population who had progressed on immunotherapy in the past. As far as any one talking about expiration dates, mine was around x-mas 2013!!!

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        THMoore
        Participant
        Ed

        The lead oncologist at MDA just cAlled. 6 PM. He met with the entire oncology team to include De James Allison.  They have decided to place me on Phase 2 of (Dragonfly) or IL12 plus NIVO or KEYTRUDA. I have had great and complete responses with both IPI and NIVO. He explained that in theory. The IL12 should help. He explained the low burden in my lungs is a bonus. So off to study exactly what I’m going in to.

        thank you for responding.

        Trent

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      Mark_DC
      Participant
      Hi Trent

      Am sorry for the bad news but I think your PA misspoke – your scans had shown improvement but some problems in your lungs. So I dont understand the PA’s statement. (And the doctors are saying you did respond to immunotherapy) I agree with all of Ed’s suggestions.

      Am glad that you are seeing the experts and they have treatments lined up and called you quickly. I hope you will explain them to us (what is dragonfly??) and how they go for you. Maybe IL12 (whatever this is) will help the immunotherapy.

      Good luck Mark

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      Bubbles
      Participant
      So sorry that you are facing this, Trent.  So very glad that MDA is working to get you started on an effective treatment ASAP.  Looks like this is the trial that you will be starting = https://clinicaltrials.gov/ct2/show/NCT03991130?term=il-2&recrs=ab&cond=Melanoma+Stage&draw=2&rank=1

      Your docs may have explained it already, but IL-2 is a bitch!  Glad you will be admitted in a place familiar with administering it.  Still, as tough as it may be, I know you can do this!!!  IL-2 on its own has been known to have positive results that are durable (long lasting) in treating melanoma.  A dear one on this forum took it back in the dark ages of melanoma and did very well.  It should give a real boost to the anti-PD-1 that you will have administered alongside.

      Ed’s mention of the anti-LAG-3 combo is a good one to keep in your back pocket as well.  Hopefully, you are embarking on the last treatment you will need!!!  Yell if you need to.  Hang in there.  Wishing you my very best.  Celeste

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      ed williams
      Participant
      IL-12 from Dragonfly therapeutics sold to Bristol Mayer Squib for 475 million. Hope is this modified IL-12 will help turn cold tumors to hot tumors by helping get TIL’s into tumor. Here are a couple of links. https://news.bms.com/news/corporate-financial/2020/Dragonfly-Therapeutics-and-Bristol-Myers-Squibb-Announce-Exclusive-Global-License-for-Dragonflys-IL-12-Investigational-Immunotherapy-Program/default.aspx.   https://www.biopharmadive.com/news/bristol-myers-dragonfly-cancer-immunotherapy/583629/

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        ed williams
        Participant
        Here is the clinical trial details, looks like injectable IL-12 plus IV nivo. https://clinicaltrials.gov/ct2/show/NCT04423029

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        MelMel
        Participant

        Ed, you state that the hope is to turn a cold tumor into a hot one.

        Of course I hope this therapy works but to have a tumor grow from 6 mm to 1.5 mm in a matter of weeks does not in any way signify a “cold tumor”. Sorry to burst your bubble as your reasoning is faulty.

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        ed williams
        Participant
        Dear Melmel, the following two video’s explain ‘hot’ vs “cold” tumors. First one features Dr. Weber back in 2016 when the topic first started to be talked about and at the 3:00 min mark he explains the concept and what drugs are being studied at that time to try and turn a cold tumor ( which means non responding ) into a hot tumor ( which means responding mainly because T-cell are present) . Second video is more recent and features Dr. Postow being interview by Dr. Love on “Researcch to practice” and if you go to 3:20 min mark Dr. Postow explain the concept of hot vs cold again. I hope this will help you to understand the concept and then see how Lag-3 research is part of this and Lag-3 is being used to block Lag-3 on T-cells to allow T-cells to do their thing and kill tumors with the help of pd-1 inhibition as well. https://www.youtube.com/watch?v=J4QdRyaM9YE      https://researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=3m10s

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        Bubbles
        Participant
        Exactly, Edster.  Hot vs cold is not about tumor growth.  It is the tumor’s ability to elicit an immunologic response – or not!   This has everything to do with antigen presentation.  Great links that explain. I think you’ve got a good chance of success with your planned therapy, Trent.  Lots of top melanoma docs have been doing work with IL-12 (now that Ed set me down the right path!!  HA!!).  Dr. Daud has worked with it in the form of an intralesional.  It is much less of a beast than old school IL-2 and holds a lot of promise.  Yours, c

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        MelMel
        Participant
        I have read about cold and hot tumors and it also depends on the amount of mutations present in a melanoma tumor. Apparently, with low number of mutations the tumor is less likely to respond. As with anything cancer related, as cells rapidly divide, they may possess more mutations and on their own they can respond to therapy which they failed to respond initially.

        Thank you for the links.

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        ed williams
        Participant
        Dr. Allison who won the Nobel prize for discovery of CTLA-4 drug ipi(yervoy) explains mutational burden in different cancers and why immunotherapy drugs work in highly mutated cancers like melanoma and lung cancer and not in other cancers with low mutational loads. 27:00min mark in following video. https://www.youtube.com/watch?v=yax499WfPTg

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      Bubbles
      Participant
      Okay!  That’s cool, Ed!  Should be more manageable than the link I put up!  Good to know.  C

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      THMoore
      Participant
      I appreciate everyone’s input. My confusion is I had 2. Complete responses and now I have a total tumor burden of the size of your index finger nail. I thought the oncologist would of put me on a clinical trial at a phase 2 level that had anywhere from a 10 to 40% success rate.  Here is a copy of the trial phase 1,

      https://www.prnewswire.com/news-releases/dragonfly-therapeutics-initiates-phase-12-study-of-its-il12-immunotherapy-in-patients-with-advanced-solid-tumors-301096938.html

      also here is the schedule I will be on.

      htttps://clinicaltrials.gov/ct2/show/NCT04423029
      In addition, please find below a sample schedule of visits required for the trial. This list is not comprehensive and final, but just for learning purposes. Starting Cycle 5, visits are just once per month. The CTRC is the outpatient research clinic.
      Screening
      6/15/2021
      Tuesday
      Biopsy, Main lab, Diagnostic EKG, CTRC lab, CT Scan/MRI, Clinic Follow Up
      C1D-1
      6/21/2021
      Monday
      Inpatient Admission
      C1D1
      6/22/2021
      Tuesday
      In patient Admission
      C1D2
      6/23/2021
      Wednesday
      Inpatient Admission discharge
      C1D3
      6/24/2021
      Thursday
      Main lab, CTRC Coordination visit (6 hours), Clinic Follow up
      C1D5
      6/25/2021
      Friday
      Main Lab, CTRC lab (30 mins), Clinic Follow up
      C1D8
      6/29/2021
      Tuesday
      Main Lab, CTRC coordination (1 hour), Clinic Follow up
      C1D15
      7/6/2021
      Tuesday
      Main Lab, CTRC lab (30 min), Clinic Follow up, Biopsy
      C2D1
      7/20/2021
      Tuesday
      Main Lab, Clinic Follow Up, CTRC (6 hours)
      C2D3
      7/22/2021
      Thursday
      Main Lab, CTRC Lab (30 mins), Clinic Follow Up
      C2D8
      7/27/2021
      Tuesday
      Main Lab, CTRC lab (30 mins), Clinic Follow Up
      C3D1
      8/17/2021
      Tuesday
      Diagnostic Imaging, Main Lab, Clinic Follow up, CTRC (4 hours), Biopsy
      C3D3
      8/19/2021
      Thursday
      Main Lab, CTRC Lab (30 mins), Clinic Follow Up
      C4D1
      9/14/2021
      Tuesday
      Main Lab, Clinic Follow up, CTRC (4 hours)
      C4D3
      9/16/2021
      Thursday
      Main Lab, CTRC Lab (30 mins), Physician Follow Up
      C4D5
      9/18/2021
      Friday
      CTRC Lab (30 mins)
      C4D8
      9/21/2021
      Tuesday
      CTRC Lab (30 mins)
      C4D15
      9/28/2021
      Tuesday
      CTRC Lab (30 mins)

      input for questions to my oncologist would be greatly appreciated

       

      Angel Hugs and Love

      Trent

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      Christinad
      Participant
      Hi Trent,

      I can’t offer you any good insight on your therapy plan, but I’m praying for you and sending good thoughts your way! Hang in there.

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      Threefitty
      Participant
      Leaving the science to my betters, I offer this observation. PA’s can be great in providing needed candor that the Onc may withhold. But there is a reason for being highly circumspect in estimating remaining life.

      My PA once made an offhand life expectancy comment. I could tell she wanted to take it back immediately and it has already been proven wrong – although it was not necessarily unrealistic when made. Ironically, I think she was trying to be helpful as she knows the doc is not overly forthcoming.

      Hoping the same for you. I’d let go of that remark, it’s not a qualified medical opinion. The step below “medical opinion” is what? Shooting the shit?

      I always wondered when someone will say “put your affairs in order”. I’m not sure that really happens much, nor should it. We know where we stand as well as we need to.

       

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      Bubbles
      Participant
      Well put, Three Fitty!!!  I have been told that I have 6 months or less to live on more than one occasion!!!  Yet – here I am!  I have been told TWICE – that I will die due to one cause or another, given we all do, delivered with a rather strange shrug – most recently only a week ago!!!!!!  Did the general oncologist (on the first occasion) or esteemed researcher (on the most recent) think I was unaware of this fact?  Did they think this factoid was germane to the discussion of my next best treatment options?  Were they both complete and total assholes who didn’t (couldn’t??? wouldn’t???) want to answer my questions?  Can’t say.  But, I think assholery played a large role.  So – yeah.  Shelf life is hard to predict.  As are the reasons folks bandy the time line about.

      Take good care all. And today?  Today I will enjoy to the greatest extent I can and wish the same for all of you! love, les

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