Update, past brain mets, etc.
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Update, past brain mets, etc.

› Forums › General Melanoma Community › Update, past brain mets, etc.

  • Post
    • March 17, 2014 at 12:57 am
    NYKaren
    Participant

    Hello all,

    i saw Dr. Pavlick this week and asked her where I sign up for expanded access Merck PD1. She explained that since my numbers are good, she wants me to keep it in my back pocket for now.  If anything changes, like my 3/31 MRI, I can sign on the dotted line. The hospital still has to approve study, etc, so things might start up at around 6 weeks.  Extremely interested to learn that expanded access studies are big money losers for all concerned.  Drug co & hospital are giving it away free. 

    Does this happen to anyone else who's had brain mets removed:  when I'm tired or stressed at the end of the day, I start to lose speech, typing dexterity, etc. Then I get "better" in the morning. Scan xiety is definitely getting me anxious too.  Then if there is anything growing, have to go wait  8 weeks after getting zapped again.  Part of the anxiety is that by this time I had already pooped out on Zel. (Now on combo)  But at least now I have plan b in that back pocket. 

    Best part of visit:  I got to meet Dick and his lovely wife!  Yes, he's just as tall and handsome as he sounds. 

    Karen

Viewing 8 reply threads
  • Replies
      • March 18, 2014 at 9:36 pm
      Carole K
      Participant

      HI Karin,

      I believe you and I corresponded awhile back or I replied to your post.  Dr. lPavlik is incredible.  I have utmost respect for her.  She is genuinely concerned about her patients and is loving and kind.  Karin, I have been the brain met route and am currently NED 12 yrs. after craniotomy at NYU.  Would love to hear your story.  I chose alternative treatment and so far so good.  Alternative therapy is not for everyone. 

      I am going to contact Dr. Pavlik to see if she would be interested in having a support group, as she once did.  Will keep you up to date.  Karin, please email me at   MMPatientSupport@aol.com. 

      Please know I am here to help in any way I can.  Hang tough.. 

      Love and Light

      Carole

      • March 18, 2014 at 9:36 pm
      Carole K
      Participant

      HI Karin,

      I believe you and I corresponded awhile back or I replied to your post.  Dr. lPavlik is incredible.  I have utmost respect for her.  She is genuinely concerned about her patients and is loving and kind.  Karin, I have been the brain met route and am currently NED 12 yrs. after craniotomy at NYU.  Would love to hear your story.  I chose alternative treatment and so far so good.  Alternative therapy is not for everyone. 

      I am going to contact Dr. Pavlik to see if she would be interested in having a support group, as she once did.  Will keep you up to date.  Karin, please email me at   MMPatientSupport@aol.com. 

      Please know I am here to help in any way I can.  Hang tough.. 

      Love and Light

      Carole

      • March 18, 2014 at 9:36 pm
      Carole K
      Participant

      HI Karin,

      I believe you and I corresponded awhile back or I replied to your post.  Dr. lPavlik is incredible.  I have utmost respect for her.  She is genuinely concerned about her patients and is loving and kind.  Karin, I have been the brain met route and am currently NED 12 yrs. after craniotomy at NYU.  Would love to hear your story.  I chose alternative treatment and so far so good.  Alternative therapy is not for everyone. 

      I am going to contact Dr. Pavlik to see if she would be interested in having a support group, as she once did.  Will keep you up to date.  Karin, please email me at   MMPatientSupport@aol.com. 

      Please know I am here to help in any way I can.  Hang tough.. 

      Love and Light

      Carole

      • March 18, 2014 at 11:42 pm
      Brendan
      Participant

      Hi Karen,

      Good luck with the 3/31 MRI.  I find myself mixing up some words as the day gets later and I get really tired.  I am in a BMS PD-1 trial right now and I am really tired.  I am also on 5mg prednisone because my pituitary is shot (due to ipi) and my cortisol is low.  As it gets later in the day my cortisol 'reserves' are almost gone and I think (not positive) that that is why I have (occasional) speech problmes.  I'll say things like "getter bo" instead of "better go".  Not all the time, but enough to notice.

      Good luck to you.

      Brendan

       

       

      • March 18, 2014 at 11:42 pm
      Brendan
      Participant

      Hi Karen,

      Good luck with the 3/31 MRI.  I find myself mixing up some words as the day gets later and I get really tired.  I am in a BMS PD-1 trial right now and I am really tired.  I am also on 5mg prednisone because my pituitary is shot (due to ipi) and my cortisol is low.  As it gets later in the day my cortisol 'reserves' are almost gone and I think (not positive) that that is why I have (occasional) speech problmes.  I'll say things like "getter bo" instead of "better go".  Not all the time, but enough to notice.

      Good luck to you.

      Brendan

       

       

        • March 19, 2014 at 1:06 am
        NYKaren
        Participant

        Those are the things I say Brendan, although sometimes completely random things will come out of my mouth…I forgot what I was talking about, but I called something a camel. We were NOT talking about camels!   Knowing I can email correctly is a good sign. 

        I also had adrenal insufficiency after colitis. Cortisone & Remicade helped, but talk about tired!  At least now I can get through the day , and I'm very lucky that my job restructured me to pretty much eliminate travel. There are kind people in this world. 

        I know I'll be stressing until the 31st, I have to keep remembering my back pocket. 

        Thanks for your reply, Brendan. Take care,

        karen

        • March 19, 2014 at 1:06 am
        NYKaren
        Participant

        Those are the things I say Brendan, although sometimes completely random things will come out of my mouth…I forgot what I was talking about, but I called something a camel. We were NOT talking about camels!   Knowing I can email correctly is a good sign. 

        I also had adrenal insufficiency after colitis. Cortisone & Remicade helped, but talk about tired!  At least now I can get through the day , and I'm very lucky that my job restructured me to pretty much eliminate travel. There are kind people in this world. 

        I know I'll be stressing until the 31st, I have to keep remembering my back pocket. 

        Thanks for your reply, Brendan. Take care,

        karen

        • March 19, 2014 at 1:06 am
        NYKaren
        Participant

        Those are the things I say Brendan, although sometimes completely random things will come out of my mouth…I forgot what I was talking about, but I called something a camel. We were NOT talking about camels!   Knowing I can email correctly is a good sign. 

        I also had adrenal insufficiency after colitis. Cortisone & Remicade helped, but talk about tired!  At least now I can get through the day , and I'm very lucky that my job restructured me to pretty much eliminate travel. There are kind people in this world. 

        I know I'll be stressing until the 31st, I have to keep remembering my back pocket. 

        Thanks for your reply, Brendan. Take care,

        karen

      • March 18, 2014 at 11:42 pm
      Brendan
      Participant

      Hi Karen,

      Good luck with the 3/31 MRI.  I find myself mixing up some words as the day gets later and I get really tired.  I am in a BMS PD-1 trial right now and I am really tired.  I am also on 5mg prednisone because my pituitary is shot (due to ipi) and my cortisol is low.  As it gets later in the day my cortisol 'reserves' are almost gone and I think (not positive) that that is why I have (occasional) speech problmes.  I'll say things like "getter bo" instead of "better go".  Not all the time, but enough to notice.

      Good luck to you.

      Brendan

       

       

      • March 21, 2014 at 2:17 am
      jag
      Participant

      Karen,

      Very happy to see that you are still posting, and it is fantastic that you have managed to stay on top of your disease.  If you are tired, don't stress about it, just rest-your brain does a lot more healing when you are bored or sleeping.  If it makes you feel any better, I live on about 3-4 cups of coffee/day now that I am back out working(anti seizure meds will take a lot out of you).  For about a year of my life, I was on Dilantin and I don't even remember much of it(my wife seriously tells me about arguments we got into and I don't remember half of them).  Anyway, just take work 1 step at a time-It is fantastic that you have people willing to be flexible with your schedule.  Believe that things will get better, get regular excercise to keep the blood flowing smoothly in your noggin for repair and keep the faith that you will someday be your old self again.  

      Said a prayer for you.

      John

      • March 21, 2014 at 2:17 am
      jag
      Participant

      Karen,

      Very happy to see that you are still posting, and it is fantastic that you have managed to stay on top of your disease.  If you are tired, don't stress about it, just rest-your brain does a lot more healing when you are bored or sleeping.  If it makes you feel any better, I live on about 3-4 cups of coffee/day now that I am back out working(anti seizure meds will take a lot out of you).  For about a year of my life, I was on Dilantin and I don't even remember much of it(my wife seriously tells me about arguments we got into and I don't remember half of them).  Anyway, just take work 1 step at a time-It is fantastic that you have people willing to be flexible with your schedule.  Believe that things will get better, get regular excercise to keep the blood flowing smoothly in your noggin for repair and keep the faith that you will someday be your old self again.  

      Said a prayer for you.

      John

      • March 21, 2014 at 2:17 am
      jag
      Participant

      Karen,

      Very happy to see that you are still posting, and it is fantastic that you have managed to stay on top of your disease.  If you are tired, don't stress about it, just rest-your brain does a lot more healing when you are bored or sleeping.  If it makes you feel any better, I live on about 3-4 cups of coffee/day now that I am back out working(anti seizure meds will take a lot out of you).  For about a year of my life, I was on Dilantin and I don't even remember much of it(my wife seriously tells me about arguments we got into and I don't remember half of them).  Anyway, just take work 1 step at a time-It is fantastic that you have people willing to be flexible with your schedule.  Believe that things will get better, get regular excercise to keep the blood flowing smoothly in your noggin for repair and keep the faith that you will someday be your old self again.  

      Said a prayer for you.

      John

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