No TIL trial for me-Brain Met
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No TIL trial for me-Brain Met

› Forums › General Melanoma Community › No TIL trial for me-Brain Met

  • Post
    • October 31, 2018 at 5:31 pm
    VinceMart
    Participant

    Well I am not going to be a candidate for the TIL trial at NIH.  During my visit, I was informed that my brain MRI showed a BB size tumor on the right cerebellum, last scan was in June and this was not there. That puts me out of the trial and looking for answers and next steps.  Cerebellum tumor doesn't sound good, ipi/nivo was the back up plan if I didn't get into this trial.   However, I failed Taf/Mek, Keytruda, and Braftov/Mektovi so I don't know if this will work either.  This sucks!  Trying to switch to a Melanoma specialist closer to home now.  Any advise is appreciated knowledgable Melanoma friends.  

    Thanks in advance!

    Vince

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  • Replies
      • October 31, 2018 at 5:50 pm
      HeidiZ
      Participant

      Sorry to hear this Vince but ippi/nivo is a great back up plan.  When I first progressed to stage IV, the ippi/nivo was just approved and my Oncologist said, lets hit back hard with the combo treatment.  So glad I did.  I got through all 4 doses and then continued on with 16 keytruda treatments.  My last treatment was 14 months ago and my recent Pet scan in August showed no uptake.  Good luck with whatever you choose. Heidi

       

        • November 3, 2018 at 11:42 pm
        VinceMart
        Participant

        Thanks Heidi, I hope to get started soon. I appreciate the reply.  Best wishes for your continued health!

      • October 31, 2018 at 6:14 pm
      ed williams
      Participant

      Hi Vince, I had 3 small treated by cyberknife back in 2013 and so far so good. Last summer at ASCO there was an Onclive video on treated brain mets and what the new research is showing. Hope it is helpful!!!Ed https://www.youtube.com/watch?time_continue=1&v=0FAZ-NPM_DU

        • October 31, 2018 at 11:52 pm
        VinceMart
        Participant

        Thanks Ed,  the doctor at NIH said even though it was small it was concerning because of the location on the cerebellum, he did not elaborate and because I was in patient shock I did not ask why.  I dont know if there are locations that cannot be treated with cyberknife or surgery on the cerebellum or what he was referring to. Also my last pet showed tumors on my spine and the chest xray showed physiologic thoracic kyphosis and mild dextrocurvature centered in the mid thoracic spine.  All of this has my head spinning.  I am back on Braftovi/Mektovi until I can get an appointment with someone.  

      • October 31, 2018 at 7:44 pm
      marta010
      Participant

      Hi Vince – you're going to find a lot of folks on this board who've had gamma knife radiation for brain mets.  My husband has had 5 and still going strong.  I'd get this done as soon as possible while it's small. Keep the faith.

      Ann

        • October 31, 2018 at 11:58 pm
        VinceMart
        Participant

        Ann,

        Did your doctor suggest it or did you have to ask for certain treatments yourself?   I have not received any information at all yet from my oncologist as far as ideas.

        Thanks,

        Vince

        • November 1, 2018 at 12:18 pm
        marta010
        Participant

        HI Vince – my husband is the paitient and all his treatment options have been directed by his medical team.  He was diagnosed in 2012 with Stage IV metastatic melanoma with tumors in his lymph nodes and brain.  Treatment options have increased dramatically since 2012 and he's been on most, if not, all of the available treatments over the past 6 years.  His brain mets have been treated with gamma knife in the frontal, temporal and occipital lobes.  He's last gamma knife was in March 2018 and he started back on Keytruda at that time.  Let me know if you have any questions.   Take care.

        Ann

        • November 3, 2018 at 11:45 pm
        VinceMart
        Participant

        Thanks Ann, I have my appointment at Duke next week so hopefully I’ll have a good plan.  Enjoy hearing that your husband is going strong, my best wishes to you both.

      • October 31, 2018 at 10:58 pm
      Bubbles
      Participant

      In 2010 I had a brain met (along with mets elsewhere) but with radiation to the brain met, followed by nivo alone, I remain NED from melanoma with last dose of nivo in June of 2013.  Point being that we have learned that when radiation (SRS – sterotactic radiation or gamma knife) is combined WITH immunotherapy – responses are better than with either alone.

      Here are a zillion articles:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy  

      Hope that helps.  I wish you my best.  Celeste

        • October 31, 2018 at 11:56 pm
        VinceMart
        Participant

        Thanks Bubbles,  I so appreciate the response and ideas.  I just didn't even know where to start, it seems like I am needing to figure all of this out for myself.  I wish my doctor would call with some ideas.

        • November 1, 2018 at 1:50 am
        Mark_DC
        Participant

        Dear Vince

        am sorry about the news. Agree with the suggestions here – hope gamma knife radiation is an option, then also ipi/nivo. Where are you based and are you having difficulties finding a specialist? Are you close to DC or Northern Virginia?

        Good luck and hope your doctor will call soon, or please find a specialist

        best wishes Mark

        • November 1, 2018 at 1:59 am
        VinceMart
        Participant

        Hi Mark,

        Thanks for the encouragement. I have had a melanoma specialist in Phila for the past year and 2 months.  But am trying to switch closer to home in NC as that is a 8 hour drive and every 3 weeks or so is getting difficult.  There is just a long wait time to be seen by anyone at Duke which is where I am trying to get into.  None of the Drs. have mentioned any radiation just ipi/nivo.

        Vince

        • November 2, 2018 at 12:04 am
        Mark_DC
        Participant

        Hi Vince, aside from someone in NC (Duke?) would travel to Georgetown in DC [Dr Atkins and team) or the team at INOVA Fairfax be of any help (bjeans uses and I think they are good).still a long drive but maybe easier? I think all of these doctors are responsive

        wish you the best

        Mark

      • November 1, 2018 at 2:59 am
      doragsda
      Participant

      In July of 2017 my wife was diagnosed with two brain mets.   One 10mm in the temporal lobe and one 25mm in the cerebellum.   We were referred to a neurosurgeon who told us the one in the cerebellum was a fairly straightforward operation to remove, while the temporal lobe was problematic.   Two days later she had brain surgery where he removed the 25mm tumor.   A week later she had gamma knife to both the remaining 10mm tumor and to the periphery of the resection cavity in her cerebellum.   She started immunotherapy after that and is still on Opdivo and is currently NED. 

        • November 3, 2018 at 11:47 pm
        VinceMart
        Participant

        Thank you for the response, I am hopeful I will have a good response too.  Wishing your wife continued excellent health!!

      • November 1, 2018 at 2:18 pm
      mrsaxde
      Participant

      Vince, I'm sorry to hear this. I thought they would accept patients with fewer than 3 brain mets. Just as I was getting ready to start treatment they came in and told me I had a small one, but that it didn't disqualify me from the trial. Maybe because they didn't catch it in screening?

      Like others here have said, stereotactic radiation is easy and works wonders on these. By the time I went back to NIH for my first follow up I had two brain mets. They said they think they were both there before treatment in the trial but one was so diffuse it looked like a cluster of blood vessels. They had me visit my local cancer center for treatment and as of my last scans they were resolving.

      Again, I'm sorry you didn't get in the trial. But it sounds like there are still things you can do. And radiation will almost certainly take care of the brain met you have.

      Best wishes to you.

      -Bill

        • November 3, 2018 at 11:50 pm
        VinceMart
        Participant

        Hi Bill, I was going to email you but been a whirlwind.  I was a bit surprised by the news and disappointed but I’m sure I will find a good route to take.  I do appreciate all the info you gave me and taking your time to respond.  All the best, Vince

      • November 1, 2018 at 5:30 pm
      MelanomaMike
      Participant
      Hi VinceMart, like the folks here have already said, the ipi/nivo is some great stuff (especially in combo with eachother) i passed the 4 infusions of Yervoy & continuing on with the nivo (usual protocol) and my first scan last month was pretty good for “me” anyways, could be “Alot” better for you, my Melanoma seems to be a bit unresponsive “bitter sweet” if you will, please consider it if the ol CyberKnife isnt in yer cards as some touched on…were behind you brother!!
        • November 3, 2018 at 11:55 pm
        VinceMart
        Participant

        Hey Mike, looks like I may be joining the Ipi Nivo club, I’ll be looking for more advise on this treatment I’m sure.  As always, thanks for your input and support.  I’m watching your posts and pulling for ya!

      • November 1, 2018 at 7:18 pm
      Mat
      Participant

      Vince, sorry to hear.  I was also knocked out of TIL after initial approval due to a brain met. I would go for ipi-nivo.  If you look at my many historical posts, you’ll see that I failed all prior treatments (they failed me, whatever) before ipi-nivo and remained stable on ipi nivo for almost 3 years.

        • November 3, 2018 at 11:57 pm
        VinceMart
        Participant

        Thanks Mat, I’m glad you had such a good run with that treatment, gives me some hope too.  Continued good health to you!

      • November 4, 2018 at 5:21 pm
      Ridingaroundwith27Jennifers
      Participant

      To echo what many have posted.  SRS with nivo works very wll in the brain.  It killed by brain met which grew back 10 days post op.  It's been 19 monts and the last MRI was a good one.  My advice for your next appointment is to go in with your list of questions and write down as much as you can.  I did that at some appointments and it really helped me keep it all straight.

      Good wishes to you,

      Jennifer

        • November 6, 2018 at 7:23 pm
        VinceMart
        Participant

        Thanks Jennifer, I have my appointment next week.  They did mention gamma knife and ipi/nivo.  I do take my wife with me to all my appointments as she is full of questions.  Switching Drs. and hospitals at this point is just stressful, but after 1 year and 1/2 of traveling 8 hours each wasy every 3 weeks, I feel now is the time to take a break and get treatment closer to home.  Thanks for the advise.  

        Best wishes to you!

        Vince

        • November 6, 2018 at 8:30 pm
        MelanomaMike
        Participant
        Hi Vince, daaaaaamn thats a lotta Driving! JeezlahWeez bro! Where you live? In the Appalachian Mountains? Ya, gettin closer to home will be such a stress reliever & more gas money BACK IN YER POCKET!
        Well, if ipi/nivo is a possibilty youll most likely have a good response, this may be your Key to your Melanoma puzzle!…just keep us informed!
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