Watch and Wait
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Watch and Wait

› Forums › General Melanoma Community › Watch and Wait

  • Post
    • October 20, 2016 at 1:55 am
    vickiaa0529
    Participant

    Is anyone doing watch and wait after having brain mets 

    is not logistically going to work to get to MD Anderson in the next few weeks as my husband is retiring on Friday and we don't won't have a home city to fly out of. Our condo in Seattle got sold and we're in hotels. I was thinking I had two months to get started but my Oncologist said no and said she would suggest close monitoring 

     

    yikes

Viewing 17 reply threads
  • Replies
      • October 20, 2016 at 2:07 am
      snow white
      Participant

      Brain mets scare me.  Melanoma grows fast.  i always think with any cancer that time is of the essence.

      Just my opinion.

      • October 20, 2016 at 2:07 am
      snow white
      Participant

      Brain mets scare me.  Melanoma grows fast.  i always think with any cancer that time is of the essence.

      Just my opinion.

      • October 20, 2016 at 2:07 am
      snow white
      Participant

      Brain mets scare me.  Melanoma grows fast.  i always think with any cancer that time is of the essence.

      Just my opinion.

        • October 20, 2016 at 2:39 am
        vickiaa0529
        Participant

        I just can't make it from Seattle to Houston in 2 weeks we have too much to wrap up 

        • October 20, 2016 at 2:39 am
        vickiaa0529
        Participant

        I just can't make it from Seattle to Houston in 2 weeks we have too much to wrap up 

        • October 20, 2016 at 2:39 am
        vickiaa0529
        Participant

        I just can't make it from Seattle to Houston in 2 weeks we have too much to wrap up 

      • October 20, 2016 at 4:30 am
      Johnjk04
      Participant

      If I had to put it on a scale  wrapping it up w/ my life on the other side. I feel my life would outweigh everything

      else.

        • October 20, 2016 at 5:13 am
        vickiaa0529
        Participant

        We may make it! We didn't realize we had to be back in 2 weeks we thought I had to decide by two weeks 

        craziness but it's getting better  

         

        thanks

         

        • October 20, 2016 at 5:13 am
        vickiaa0529
        Participant

        We may make it! We didn't realize we had to be back in 2 weeks we thought I had to decide by two weeks 

        craziness but it's getting better  

         

        thanks

         

        • October 20, 2016 at 5:13 am
        vickiaa0529
        Participant

        We may make it! We didn't realize we had to be back in 2 weeks we thought I had to decide by two weeks 

        craziness but it's getting better  

         

        thanks

         

      • October 20, 2016 at 4:30 am
      Johnjk04
      Participant

      If I had to put it on a scale  wrapping it up w/ my life on the other side. I feel my life would outweigh everything

      else.

      • October 20, 2016 at 4:30 am
      Johnjk04
      Participant

      If I had to put it on a scale  wrapping it up w/ my life on the other side. I feel my life would outweigh everything

      else.

      • October 20, 2016 at 5:36 am
      Bubbles
      Participant

      Sorry, Vicki. Hope things become more settled for you very soon! C

      • October 20, 2016 at 5:36 am
      Bubbles
      Participant

      Sorry, Vicki. Hope things become more settled for you very soon! C

      • October 20, 2016 at 5:36 am
      Bubbles
      Participant

      Sorry, Vicki. Hope things become more settled for you very soon! C

      • October 20, 2016 at 1:18 pm
      cancersnewnormal
      Participant

      Vicki…. glad to see your final post that you "may make it". From my personal experience, and that of Jennifer's dad (snowwhite), brain tumors are nothing to watch and wait. Neither I, nor her dad, waited on treatment, and yet still cropped up nearly double the initial number of lesions by the time the high resolution MRI was done, just minutes prior to radiation. Brain metastasis is super frightening, because the little buggers can be there with absolutely ZERO symptoms. I had 40 of them (over a 2 year span), and only ONE ever gave me any neurological indication that it was there. I understand that it comes at an incredibly poor time for you… but this is the kind of thing that can literally kill you. 

      • October 20, 2016 at 1:18 pm
      cancersnewnormal
      Participant

      Vicki…. glad to see your final post that you "may make it". From my personal experience, and that of Jennifer's dad (snowwhite), brain tumors are nothing to watch and wait. Neither I, nor her dad, waited on treatment, and yet still cropped up nearly double the initial number of lesions by the time the high resolution MRI was done, just minutes prior to radiation. Brain metastasis is super frightening, because the little buggers can be there with absolutely ZERO symptoms. I had 40 of them (over a 2 year span), and only ONE ever gave me any neurological indication that it was there. I understand that it comes at an incredibly poor time for you… but this is the kind of thing that can literally kill you. 

      • October 20, 2016 at 1:18 pm
      cancersnewnormal
      Participant

      Vicki…. glad to see your final post that you "may make it". From my personal experience, and that of Jennifer's dad (snowwhite), brain tumors are nothing to watch and wait. Neither I, nor her dad, waited on treatment, and yet still cropped up nearly double the initial number of lesions by the time the high resolution MRI was done, just minutes prior to radiation. Brain metastasis is super frightening, because the little buggers can be there with absolutely ZERO symptoms. I had 40 of them (over a 2 year span), and only ONE ever gave me any neurological indication that it was there. I understand that it comes at an incredibly poor time for you… but this is the kind of thing that can literally kill you. 

      • October 20, 2016 at 4:57 pm
      Polymath
      Participant

      Hi Vicki,

      Although I may not understand all the details, MD Anderson is not the only game in town.  I would think you could get GK in Seattle.  In fact when I was looking into Proton Beam radiation therapy it turned out Seattle was one two top centers for that very advanced form of radiation.  I would think there would be local options for you.

      Gary

      • October 20, 2016 at 4:57 pm
      Polymath
      Participant

      Hi Vicki,

      Although I may not understand all the details, MD Anderson is not the only game in town.  I would think you could get GK in Seattle.  In fact when I was looking into Proton Beam radiation therapy it turned out Seattle was one two top centers for that very advanced form of radiation.  I would think there would be local options for you.

      Gary

        • October 20, 2016 at 7:30 pm
        Polymath
        Participant

        oops, Sorry, I just saw an older post and realized you already treated the brain mets.  In that case, it would seem 2-weeks is not that long before starting another treatment.

        Gary

        • October 20, 2016 at 7:30 pm
        Polymath
        Participant

        oops, Sorry, I just saw an older post and realized you already treated the brain mets.  In that case, it would seem 2-weeks is not that long before starting another treatment.

        Gary

        • October 20, 2016 at 10:45 pm
        vickiaa0529
        Participant

        Thanks Gary

        i start ipi on 11/1 or 3 

        Not sure of the logistics but I'll be there

         

        • October 20, 2016 at 10:45 pm
        vickiaa0529
        Participant

        Thanks Gary

        i start ipi on 11/1 or 3 

        Not sure of the logistics but I'll be there

         

        • October 20, 2016 at 10:45 pm
        vickiaa0529
        Participant

        Thanks Gary

        i start ipi on 11/1 or 3 

        Not sure of the logistics but I'll be there

         

        • October 20, 2016 at 7:30 pm
        Polymath
        Participant

        oops, Sorry, I just saw an older post and realized you already treated the brain mets.  In that case, it would seem 2-weeks is not that long before starting another treatment.

        Gary

      • October 20, 2016 at 4:57 pm
      Polymath
      Participant

      Hi Vicki,

      Although I may not understand all the details, MD Anderson is not the only game in town.  I would think you could get GK in Seattle.  In fact when I was looking into Proton Beam radiation therapy it turned out Seattle was one two top centers for that very advanced form of radiation.  I would think there would be local options for you.

      Gary

      • October 20, 2016 at 10:48 pm
      vickiaa0529
      Participant

      Just heard from MDA I start ipi 11/1 or 11/3

      i have to drop my Boomer dog off with friends in Austin on 10/26 I hope we get there in time

      Thanks for putting up with my freak out!!

       

      • October 20, 2016 at 10:48 pm
      vickiaa0529
      Participant

      Just heard from MDA I start ipi 11/1 or 11/3

      i have to drop my Boomer dog off with friends in Austin on 10/26 I hope we get there in time

      Thanks for putting up with my freak out!!

       

        • October 21, 2016 at 5:18 am
        Polymath
        Participant

        Vicki,

        Good for you, and adding immunotherapy in conjunction with radiation appears to have a synergistic effect. You might inquire about doing anti PD-1 instead of ipi.  Celeste's blog has info on the response rates and doing pembro or nivo prior to ipi has a significantly higher overall response rate and generally fewer side-effects.  Best in the battle.

        Gary

        • October 21, 2016 at 5:18 am
        Polymath
        Participant

        Vicki,

        Good for you, and adding immunotherapy in conjunction with radiation appears to have a synergistic effect. You might inquire about doing anti PD-1 instead of ipi.  Celeste's blog has info on the response rates and doing pembro or nivo prior to ipi has a significantly higher overall response rate and generally fewer side-effects.  Best in the battle.

        Gary

        • October 21, 2016 at 5:18 am
        Polymath
        Participant

        Vicki,

        Good for you, and adding immunotherapy in conjunction with radiation appears to have a synergistic effect. You might inquire about doing anti PD-1 instead of ipi.  Celeste's blog has info on the response rates and doing pembro or nivo prior to ipi has a significantly higher overall response rate and generally fewer side-effects.  Best in the battle.

        Gary

      • October 20, 2016 at 10:48 pm
      vickiaa0529
      Participant

      Just heard from MDA I start ipi 11/1 or 11/3

      i have to drop my Boomer dog off with friends in Austin on 10/26 I hope we get there in time

      Thanks for putting up with my freak out!!

       

Viewing 17 reply threads
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