Lung involvement
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Lung involvement

› Forums › General Melanoma Community › Lung involvement

  • Post
    • January 12, 2017 at 11:01 pm
    vickiaa0529
    Participant

    Hi 

    I been lurking for a while and rooting for you all with lots of prayers and positive energy. I just finished four rounds of ipi just had scans and now there are new lesions on my lungs. New choice is a trial with Nivo and Dab Tram or Keytruda? 

    This is a MDA trail. Has anyone tried it or any thoughts?

     

    thanks 

    vicki

Viewing 8 reply threads
  • Replies
      • January 13, 2017 at 12:27 am
      Bubbles
      Participant

      Sorry Vicki!  Here's a post with lots of links within….that addresses immunotherapy combined with BRAF/MEK:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

      It looks pretty promising.  Hang in there!  Celeste

        • January 13, 2017 at 12:42 am
        vickiaa0529
        Participant

        I'm leaning towards this one 

        once again thanks for the info 

        • January 13, 2017 at 12:42 am
        vickiaa0529
        Participant

        I'm leaning towards this one 

        once again thanks for the info 

        • January 13, 2017 at 12:42 am
        vickiaa0529
        Participant

        I'm leaning towards this one 

        once again thanks for the info 

      • January 13, 2017 at 12:27 am
      Bubbles
      Participant

      Sorry Vicki!  Here's a post with lots of links within….that addresses immunotherapy combined with BRAF/MEK:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

      It looks pretty promising.  Hang in there!  Celeste

      • January 13, 2017 at 12:27 am
      Bubbles
      Participant

      Sorry Vicki!  Here's a post with lots of links within….that addresses immunotherapy combined with BRAF/MEK:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

      It looks pretty promising.  Hang in there!  Celeste

      • January 13, 2017 at 2:06 am
      Charlie S
      Participant

      Hi ya, VickiLurk………….**smile**

      The trouble with IPI is that , if it is going to work, it takes a long time to tell and that is frustrating.

      Now, what about the lung lesions.  

      They are bilateral?  Both lungs and what size and how many?

      Are any of them operative?

      Are you symptomatic in any way?  Coughing, trouble breathing, congestion, shortness of breath?

      Oh yeah………………..and who won the World Series in 1939?

      Just kidding, sorry for the questions.

      I did ipilimumab a few times and was not impressed; then again I am not easily impressed.  Did not work for a lung met.

      Ended up having a wedge dissection in my right lung.    That worked.

      Well (sigh) for a bit; anyway after several attempts of living better through chemistry in many ways (IL2) the drug dealer hit me up with Keytruda.

      So far, after shooting up four times my body is not driving me crazy.

      I have personal experience with MDA and they are great.  

      But juuuuuuuuuuuuuuuuust as a consideration, outside of surgery what is the argument not to try Keytruda right now.

      If it works, it can show results in 60 days or less.

      I do not know whether doing Keytruda colors the trial enrollment you are speaking of.

      It is fair to say though that Keytruda alone is working for some; no not all, but NO treatment is.

      Just thinking outloud.

      I live by myself so the noise doesn't bother me.

      I wish you well.

       

      Cheers,

      Charlie

       

       

      • January 13, 2017 at 2:06 am
      Charlie S
      Participant

      Hi ya, VickiLurk………….**smile**

      The trouble with IPI is that , if it is going to work, it takes a long time to tell and that is frustrating.

      Now, what about the lung lesions.  

      They are bilateral?  Both lungs and what size and how many?

      Are any of them operative?

      Are you symptomatic in any way?  Coughing, trouble breathing, congestion, shortness of breath?

      Oh yeah………………..and who won the World Series in 1939?

      Just kidding, sorry for the questions.

      I did ipilimumab a few times and was not impressed; then again I am not easily impressed.  Did not work for a lung met.

      Ended up having a wedge dissection in my right lung.    That worked.

      Well (sigh) for a bit; anyway after several attempts of living better through chemistry in many ways (IL2) the drug dealer hit me up with Keytruda.

      So far, after shooting up four times my body is not driving me crazy.

      I have personal experience with MDA and they are great.  

      But juuuuuuuuuuuuuuuuust as a consideration, outside of surgery what is the argument not to try Keytruda right now.

      If it works, it can show results in 60 days or less.

      I do not know whether doing Keytruda colors the trial enrollment you are speaking of.

      It is fair to say though that Keytruda alone is working for some; no not all, but NO treatment is.

      Just thinking outloud.

      I live by myself so the noise doesn't bother me.

      I wish you well.

       

      Cheers,

      Charlie

       

       

        • January 13, 2017 at 3:09 am
        vickiaa0529
        Participant

        Hi 

        No symptoms whatsoever. My CT experience yesterday was a nightmare I got there at 10:30 am and did not get back to the hotel until 7:30pm. Needless to say all of my results were not in just the images. Small lesions on both lungs the right lung appeared to be about an inch? Ish. Surgery was not an option. It seems like combining the BRAF drugs with Nivo may be the hammer to knock this to the curb. But Keytruda would fit my lifestyle better. I do not want to live in Houston for three years. I'm longing to go back to Seattle. 

        Cheers

        vicki

        • January 13, 2017 at 3:09 am
        vickiaa0529
        Participant

        Hi 

        No symptoms whatsoever. My CT experience yesterday was a nightmare I got there at 10:30 am and did not get back to the hotel until 7:30pm. Needless to say all of my results were not in just the images. Small lesions on both lungs the right lung appeared to be about an inch? Ish. Surgery was not an option. It seems like combining the BRAF drugs with Nivo may be the hammer to knock this to the curb. But Keytruda would fit my lifestyle better. I do not want to live in Houston for three years. I'm longing to go back to Seattle. 

        Cheers

        vicki

        • January 13, 2017 at 3:32 am
        Charlie S
        Participant

        You are not an experiment, you are Vicki.

        You are Vicki.

        How you live to be Vicki is the best for you.

         

        Cheers,

        Charlie S

        • January 13, 2017 at 3:32 am
        Charlie S
        Participant

        You are not an experiment, you are Vicki.

        You are Vicki.

        How you live to be Vicki is the best for you.

         

        Cheers,

        Charlie S

        • January 13, 2017 at 5:29 am
        vickiaa0529
        Participant

        That is true ! Thanks 

        • January 13, 2017 at 5:29 am
        vickiaa0529
        Participant

        That is true ! Thanks 

        • January 13, 2017 at 5:29 am
        vickiaa0529
        Participant

        That is true ! Thanks 

        • January 13, 2017 at 3:32 am
        Charlie S
        Participant

        You are not an experiment, you are Vicki.

        You are Vicki.

        How you live to be Vicki is the best for you.

         

        Cheers,

        Charlie S

        • January 13, 2017 at 5:37 am
        adriana cooper
        Participant

        Why not return to Seattle? Have you been working with someone there after Dr. Byrd ( a great man, BTW) Maybe contact me off list if you like. harborhits@gmail.com Adriana has been at SCCA since 2012.

        Rob

        • January 13, 2017 at 5:37 am
        adriana cooper
        Participant

        Why not return to Seattle? Have you been working with someone there after Dr. Byrd ( a great man, BTW) Maybe contact me off list if you like. harborhits@gmail.com Adriana has been at SCCA since 2012.

        Rob

        • January 13, 2017 at 5:37 am
        adriana cooper
        Participant

        Why not return to Seattle? Have you been working with someone there after Dr. Byrd ( a great man, BTW) Maybe contact me off list if you like. harborhits@gmail.com Adriana has been at SCCA since 2012.

        Rob

        • January 13, 2017 at 3:09 am
        vickiaa0529
        Participant

        Hi 

        No symptoms whatsoever. My CT experience yesterday was a nightmare I got there at 10:30 am and did not get back to the hotel until 7:30pm. Needless to say all of my results were not in just the images. Small lesions on both lungs the right lung appeared to be about an inch? Ish. Surgery was not an option. It seems like combining the BRAF drugs with Nivo may be the hammer to knock this to the curb. But Keytruda would fit my lifestyle better. I do not want to live in Houston for three years. I'm longing to go back to Seattle. 

        Cheers

        vicki

      • January 13, 2017 at 2:06 am
      Charlie S
      Participant

      Hi ya, VickiLurk………….**smile**

      The trouble with IPI is that , if it is going to work, it takes a long time to tell and that is frustrating.

      Now, what about the lung lesions.  

      They are bilateral?  Both lungs and what size and how many?

      Are any of them operative?

      Are you symptomatic in any way?  Coughing, trouble breathing, congestion, shortness of breath?

      Oh yeah………………..and who won the World Series in 1939?

      Just kidding, sorry for the questions.

      I did ipilimumab a few times and was not impressed; then again I am not easily impressed.  Did not work for a lung met.

      Ended up having a wedge dissection in my right lung.    That worked.

      Well (sigh) for a bit; anyway after several attempts of living better through chemistry in many ways (IL2) the drug dealer hit me up with Keytruda.

      So far, after shooting up four times my body is not driving me crazy.

      I have personal experience with MDA and they are great.  

      But juuuuuuuuuuuuuuuuust as a consideration, outside of surgery what is the argument not to try Keytruda right now.

      If it works, it can show results in 60 days or less.

      I do not know whether doing Keytruda colors the trial enrollment you are speaking of.

      It is fair to say though that Keytruda alone is working for some; no not all, but NO treatment is.

      Just thinking outloud.

      I live by myself so the noise doesn't bother me.

      I wish you well.

       

      Cheers,

      Charlie

       

       

      • January 13, 2017 at 5:23 am
      Mat
      Participant

      It is possible to combine those meds off trial with cooperation from your onc.

      • January 13, 2017 at 5:23 am
      Mat
      Participant

      It is possible to combine those meds off trial with cooperation from your onc.

      • January 13, 2017 at 5:23 am
      Mat
      Participant

      It is possible to combine those meds off trial with cooperation from your onc.

        • January 13, 2017 at 5:28 am
        vickiaa0529
        Participant

        Really that would be awesome more flexibility 

        thanks 

        • January 13, 2017 at 5:28 am
        vickiaa0529
        Participant

        Really that would be awesome more flexibility 

        thanks 

        • January 13, 2017 at 5:28 am
        vickiaa0529
        Participant

        Really that would be awesome more flexibility 

        thanks 

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