Update on Cellular Adoptive Trial
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Update on Cellular Adoptive Trial

› Forums › General Melanoma Community › Update on Cellular Adoptive Trial

  • Post
    • March 9, 2017 at 10:07 pm
    BrianP
    Participant

    Just got my 12 week scan results for my Cellular Adoptive Immunotherapy + Ipi trial..  Good news is the lesions in my abdomen continue to remain stable and marginally shrink.  I'll take that result any day.  Bad news is there is a 5x7mm lesion on the brain.  My Doctor seems to think it's the real deal and needs to be dealt with.  Over 5 years in the game and this is my first foray into the Brain Met Club.  I'm at MDA now and they are scheduling me consults for Gamma Knife..  They scheduled me for a consult with Dr. Caroline Chung (radiologist) today and tomorrow with Dr. Sherise Ferguson (neurosurgeon).  Curious if anyone has had any dealings with these two? This is moving fast and it sounds like I'll be back down here the week after next to get zapped.  Normally like to have more time to research and get 2nd opinions but I think this is the right move to get things taken care of quickly.  Curious what others think about finding the "best" Gamma knife guy or gal.  Seems unlike surgery where there is definitely an artistry to it the gamma knife is mostly computer controlled based on "carefully" inputted parameters.  Feel like anyone at MDA and the equipment is probably topnotch.

    Will spend the next couple weeks looking at post gamma knife options.  Leaning toward going back to nivo as soon as possible to maybe capitalize on some abscopal effect.

    Brianj

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  • Replies
      • March 9, 2017 at 10:22 pm
      jennunicorn
      Participant

      So good to hear abdomen is lookin good.. but then mel has to go and be a bully and start shop in your brain! Not cool mel, not cool! Gamma knife that sucker and tell it who's boss. 

      Wishing you the best as always,

        • March 10, 2017 at 2:24 am
        BrianP
        Participant

        Thanks Jenn.

      • March 10, 2017 at 12:12 am
      Bubbles
      Participant

      Yay!!!  And…sorry!  Welcome to the holey head club!!!  It sucks, but you can do it!  I've hung out 7 years since my SRS brain met zappage.  No specific recommendations as to who.  I had mine done locally.  I'm sure you will do well.  Nivo asap sounds wise, too!  

      Recently posted this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/srs-with-any-systemic-therapy-helps.html

      And there are these zillion links….particularly the one…"Don't wait to add immunotherapy to SRS":

      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/one-more-timebetter-responses-when.html  

      Hang in there!!  You got this!! love, c

        • March 10, 2017 at 2:35 am
        BrianP
        Participant

        Thanks Celeste. Went to your blog earlier today.  Knew there was some good stuff on this subject there.  If I have the Gamma knife in 2 weeks what do you think about getting a PD-1 hit next week?  Seems like the docs here are leaning toward starting after.  I think there's some concern pre-immunotherapy treatment can slightly increase the risk of  brain swelling around the treated tumor.  Have you seen any data about pre vs. post immunotherapy treatment?

        • March 10, 2017 at 3:27 pm
        BrianP
        Participant

        Found my answer in your blog.. Doesn't seem like there's a reason to wait. 

        • March 10, 2017 at 4:22 pm
        Bubbles
        Participant

        Yep…it's all there.  I can find no proven reason to wait on either component, while much data indicates that patients do better when radiation and immunotherapy are combined or given in RAPID succession. As soon as we can drill this into oncologists heads…maybe we won't have as many folks (like me and you) having holes drilled into ours!!! Hang in there. love, c

      • March 10, 2017 at 2:22 am
      maperny
      Participant

      Great news on abdomen.  Sorry about brain met but they will zap that quickly.

      we have had quite a lot of surgeons, radiologists and interventional radiologists during our time at MDA and they have all been stellar.

      the neurosurgeon was Dr Tatsui who did spine surgery, he was excellent and I believe the whole department are awesome!

      you are in great hands!  You have got this!!

      Maria

        • March 10, 2017 at 2:35 am
        BrianP
        Participant

        Thanks Maria.

        • March 10, 2017 at 12:31 pm
        zfishberg
        Participant

        Gamma Knife is the best treatment for Melanoma brain mets if compared with other SRS methods and WBRT.

        My husband had a craniotomy in October to remove 1 large lesion – 2.5 cm and in three weeks he had his first Gamma Knife procedure to treat 10 remaining lesion – sizes from 1mm  to 2 cm.

        the subsequent MRI in 8 weeks showed very promising results – all of them shrunk by 30-40 %%.

        since November he was on the Taff/Mek combo, but had to stop in late January because of adverse reaction – very high fever (103-104) and terrible chills – almost every week.

        we started on PD-1 – Keytruda in February.

        the next MRI in February showed new growth so we had our  second Gamma Knife treatment this week. The MRI performed before the procedure revealed 20! New leasions – sized from 1mm to 10mm. They all were treated.

        although radiologist suggested that in case progression will not stop he recommends WBRT next time. 

        We are trying to avoid it. So will continue with Keytruda and wait for the next MRI in 6 weeks. 

        Our position is to stick with PD-1 and Gamma Knife for as long as possible. Unless another craniotomy will be required

         

        –Zina

      • March 10, 2017 at 9:23 pm
      Mat
      Participant

      Brian, sorry to hear but as you know from my experience, the brain is just another site.  Gamma knife = no big deal.  MDA will have state of the art equipment and top notch people.

      • March 13, 2017 at 4:57 pm
      jenny22
      Participant

      Hi Brian- just read your update…great news about other body parts….damn about the brain mets…but sounds like the SRS is the right move…..and hopefuly will get rid of them….hoping then you may NOTHING anywhere!!!

      good luck and keep us posted.

       

      jenny

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