Good news
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Good news

› Forums › General Melanoma Community › Good news

  • Post
    • February 13, 2014 at 3:16 pm
    NYKaren
    Participant

    Hi all,

    Yesterday I had MRI, saw onc and neurosurgeon. 

    Dr. Pavlick saw regression on some of those pesky scalp mets, and my LDH went down a few more points. It had been quite high, went down a lot last month after starting MEK, and continued. So I'm stable.  I just love her. I never thought I'd like someone as much as Dr. Wolchuck, but they're both terrific. 

    Then on to Dr. Kondziolka, my Neurosurgeon. All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month.   When he told me that 10, even 5 years ago, it would not have been possible to Gamma Knife so many mets, I asked if it was because advances have been made with the GN.  he said no, it's because of the advances in the ways they've learned to use it.  Not so long ago, it would have been WBR.   He was delighted at my affect; said I was sharp as a tack. Lol. 

    Also, Dr. P was going to be speaking to Merck about expanded access; will let you know. 

    Karen

Viewing 20 reply threads
  • Replies
      • February 13, 2014 at 3:17 pm
      NYKaren
      Participant

      I meant to say expanded access to PD1. 

        • February 13, 2014 at 9:08 pm
        Tina D
        Participant

        Awesome news all the way around! Congratulations : )

        Tina

        • February 13, 2014 at 9:08 pm
        Tina D
        Participant

        Awesome news all the way around! Congratulations : )

        Tina

        • February 13, 2014 at 9:08 pm
        Tina D
        Participant

        Awesome news all the way around! Congratulations : )

        Tina

      • February 13, 2014 at 3:17 pm
      NYKaren
      Participant

      I meant to say expanded access to PD1. 

      • February 13, 2014 at 3:17 pm
      NYKaren
      Participant

      I meant to say expanded access to PD1. 

      • February 13, 2014 at 3:26 pm
      kpcollins31
      Participant

      Congratulations – Great news.

      Kevin

       

        • February 13, 2014 at 3:28 pm
        Mat
        Participant

        Great news Karen!

        • February 13, 2014 at 4:20 pm
        Brendan
        Participant

        "All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month."

        Great news!!  Congrats.

        Brendan

        • February 13, 2014 at 4:20 pm
        Brendan
        Participant

        "All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month."

        Great news!!  Congrats.

        Brendan

        • February 13, 2014 at 4:20 pm
        Brendan
        Participant

        "All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month."

        Great news!!  Congrats.

        Brendan

        • February 13, 2014 at 3:28 pm
        Mat
        Participant

        Great news Karen!

        • February 13, 2014 at 3:28 pm
        Mat
        Participant

        Great news Karen!

      • February 13, 2014 at 3:26 pm
      kpcollins31
      Participant

      Congratulations – Great news.

      Kevin

       

      • February 13, 2014 at 3:26 pm
      kpcollins31
      Participant

      Congratulations – Great news.

      Kevin

       

      • February 13, 2014 at 4:35 pm
      Bubbles
      Participant

      Oh, Karen! That's WONDERFUL!!!!  You are an inspiration to all of us and especially to those with brain mets with the need for SRS as well as the BRAF/MEK combo!  You go girl!!!  celeste

      • February 13, 2014 at 4:35 pm
      Bubbles
      Participant

      Oh, Karen! That's WONDERFUL!!!!  You are an inspiration to all of us and especially to those with brain mets with the need for SRS as well as the BRAF/MEK combo!  You go girl!!!  celeste

      • February 13, 2014 at 4:35 pm
      Bubbles
      Participant

      Oh, Karen! That's WONDERFUL!!!!  You are an inspiration to all of us and especially to those with brain mets with the need for SRS as well as the BRAF/MEK combo!  You go girl!!!  celeste

      • February 13, 2014 at 8:34 pm
      POW
      Participant

      That's wonderful news, Karen! Good for you! You are a courageous warrior and a true inspiration. Keep doing what you're doing!

      • February 13, 2014 at 8:34 pm
      POW
      Participant

      That's wonderful news, Karen! Good for you! You are a courageous warrior and a true inspiration. Keep doing what you're doing!

      • February 13, 2014 at 8:34 pm
      POW
      Participant

      That's wonderful news, Karen! Good for you! You are a courageous warrior and a true inspiration. Keep doing what you're doing!

      • February 13, 2014 at 10:24 pm
      shonnat
      Participant

      Hi Karen,

       

      My husband was diagnosed with 3 brain mets and now 8 months later with 10 spots. He had WBR and srs on the one that caused his problems 8 months ago. Now they refuse to give him any more srs treatment without a proper explanation except that he has had too much radiation already. But that doesn't make sense as they were looking to give him more. They only treat up to 3 at a time yet I see on this board so many that have had more treated. I am looking for a second opinion. We are in Canada and maybe their protocol is different. I want at least a more definitve explanation before I give up.

      Do you mind telling me how many of yours were treated at the same time and what size were they.

      Thanks

      Anna

      • February 13, 2014 at 10:24 pm
      shonnat
      Participant

      Hi Karen,

       

      My husband was diagnosed with 3 brain mets and now 8 months later with 10 spots. He had WBR and srs on the one that caused his problems 8 months ago. Now they refuse to give him any more srs treatment without a proper explanation except that he has had too much radiation already. But that doesn't make sense as they were looking to give him more. They only treat up to 3 at a time yet I see on this board so many that have had more treated. I am looking for a second opinion. We are in Canada and maybe their protocol is different. I want at least a more definitve explanation before I give up.

      Do you mind telling me how many of yours were treated at the same time and what size were they.

      Thanks

      Anna

      • February 13, 2014 at 10:24 pm
      shonnat
      Participant

      Hi Karen,

       

      My husband was diagnosed with 3 brain mets and now 8 months later with 10 spots. He had WBR and srs on the one that caused his problems 8 months ago. Now they refuse to give him any more srs treatment without a proper explanation except that he has had too much radiation already. But that doesn't make sense as they were looking to give him more. They only treat up to 3 at a time yet I see on this board so many that have had more treated. I am looking for a second opinion. We are in Canada and maybe their protocol is different. I want at least a more definitve explanation before I give up.

      Do you mind telling me how many of yours were treated at the same time and what size were they.

      Thanks

      Anna

        • February 14, 2014 at 1:49 am
        NYKaren
        Participant

        Hi Anna,

        i had about 15 each of 2 times. The largest was 22 mm, so luckily they were small.   Each time the neuro knew I had them, he did them all. It took him a long time to plot them out and even the procedures themselves were comparatively long… 2 hours for the second one.  

        Last year, when Zel stopped working for me, I developed the first set. Then I started Tafinlar but very stupidly I myself messed up the dosing and was in too much of a hurry to get off steroids ( hoping for that elusive PD1 clinical trial). This time was 2 months ago, stayed on steroids 1 month, remain on Kepra and of course BRAF/MEK combo. 

        I find it hard to believe that a doc would talk about too much radiation.  I would definitely get a second opinion.   

        Hope this helps,

         karen

        • February 14, 2014 at 1:49 am
        NYKaren
        Participant

        Hi Anna,

        i had about 15 each of 2 times. The largest was 22 mm, so luckily they were small.   Each time the neuro knew I had them, he did them all. It took him a long time to plot them out and even the procedures themselves were comparatively long… 2 hours for the second one.  

        Last year, when Zel stopped working for me, I developed the first set. Then I started Tafinlar but very stupidly I myself messed up the dosing and was in too much of a hurry to get off steroids ( hoping for that elusive PD1 clinical trial). This time was 2 months ago, stayed on steroids 1 month, remain on Kepra and of course BRAF/MEK combo. 

        I find it hard to believe that a doc would talk about too much radiation.  I would definitely get a second opinion.   

        Hope this helps,

         karen

        • February 14, 2014 at 1:49 am
        NYKaren
        Participant

        Hi Anna,

        i had about 15 each of 2 times. The largest was 22 mm, so luckily they were small.   Each time the neuro knew I had them, he did them all. It took him a long time to plot them out and even the procedures themselves were comparatively long… 2 hours for the second one.  

        Last year, when Zel stopped working for me, I developed the first set. Then I started Tafinlar but very stupidly I myself messed up the dosing and was in too much of a hurry to get off steroids ( hoping for that elusive PD1 clinical trial). This time was 2 months ago, stayed on steroids 1 month, remain on Kepra and of course BRAF/MEK combo. 

        I find it hard to believe that a doc would talk about too much radiation.  I would definitely get a second opinion.   

        Hope this helps,

         karen

        • February 15, 2014 at 11:32 pm
        shonnat
        Participant

        Thanks for the info. Unfortunately my husband died yesterday from a rapid growth of his brain mets,

        He was inpirational in his approach to living with cancer.  How I hate this disease.  

        Good luck to you!

         

        Anna

        • February 15, 2014 at 11:32 pm
        shonnat
        Participant

        Thanks for the info. Unfortunately my husband died yesterday from a rapid growth of his brain mets,

        He was inpirational in his approach to living with cancer.  How I hate this disease.  

        Good luck to you!

         

        Anna

        • February 15, 2014 at 11:32 pm
        shonnat
        Participant

        Thanks for the info. Unfortunately my husband died yesterday from a rapid growth of his brain mets,

        He was inpirational in his approach to living with cancer.  How I hate this disease.  

        Good luck to you!

         

        Anna

        • February 16, 2014 at 1:22 am
        POW
        Participant

        Oh, Anna! I'm so sorry to learn this. It sounds like your husband's melanoma was particularly aggressive and resistant to treatment. I know that you tried everything that you possibly could to help him.  You fought by his side every step of the way.

        Your husband was a vailant warrior and I hope that he is now at peace.  I hope that you are surrounded by loving family and friends who can help and comfort you during this difficult time. Thank you so much for sharing your journey with us.

        • February 16, 2014 at 1:22 am
        POW
        Participant

        Oh, Anna! I'm so sorry to learn this. It sounds like your husband's melanoma was particularly aggressive and resistant to treatment. I know that you tried everything that you possibly could to help him.  You fought by his side every step of the way.

        Your husband was a vailant warrior and I hope that he is now at peace.  I hope that you are surrounded by loving family and friends who can help and comfort you during this difficult time. Thank you so much for sharing your journey with us.

        • February 16, 2014 at 1:22 am
        POW
        Participant

        Oh, Anna! I'm so sorry to learn this. It sounds like your husband's melanoma was particularly aggressive and resistant to treatment. I know that you tried everything that you possibly could to help him.  You fought by his side every step of the way.

        Your husband was a vailant warrior and I hope that he is now at peace.  I hope that you are surrounded by loving family and friends who can help and comfort you during this difficult time. Thank you so much for sharing your journey with us.

        • February 16, 2014 at 1:35 pm
        shonnat
        Participant

         That's very kind of you.

        I am fortunate to have lots of love in my life.

        Anna

        • February 16, 2014 at 1:35 pm
        shonnat
        Participant

         That's very kind of you.

        I am fortunate to have lots of love in my life.

        Anna

        • February 16, 2014 at 1:35 pm
        shonnat
        Participant

         That's very kind of you.

        I am fortunate to have lots of love in my life.

        Anna

      • February 14, 2014 at 12:24 am
      jag
      Participant

      Way to go Karen! very happy to see you are doing so well.  I am so far removed from current therapies, that I can't believe that they GN'd so many tumors either.  I remember Dr. Wolchok talked to me about WBR once because I had 2!

      Unfortunately (and maybe fortunately) there was a ton of radiation necrosis which eventually led to me having seizures.  Keep you patnet updated so old timers can check in every so often.

      John

      • February 14, 2014 at 12:24 am
      jag
      Participant

      Way to go Karen! very happy to see you are doing so well.  I am so far removed from current therapies, that I can't believe that they GN'd so many tumors either.  I remember Dr. Wolchok talked to me about WBR once because I had 2!

      Unfortunately (and maybe fortunately) there was a ton of radiation necrosis which eventually led to me having seizures.  Keep you patnet updated so old timers can check in every so often.

      John

      • February 14, 2014 at 12:24 am
      jag
      Participant

      Way to go Karen! very happy to see you are doing so well.  I am so far removed from current therapies, that I can't believe that they GN'd so many tumors either.  I remember Dr. Wolchok talked to me about WBR once because I had 2!

      Unfortunately (and maybe fortunately) there was a ton of radiation necrosis which eventually led to me having seizures.  Keep you patnet updated so old timers can check in every so often.

      John

        • February 14, 2014 at 1:43 am
        ljhncj12345
        Participant

        Congratulations on your good news!

        • February 14, 2014 at 1:43 am
        ljhncj12345
        Participant

        Congratulations on your good news!

        • February 14, 2014 at 1:43 am
        ljhncj12345
        Participant

        Congratulations on your good news!

      • February 14, 2014 at 2:22 pm
      hbecker
      Participant

      Yay Karen!! So happy for you!

      Hazel

      • February 14, 2014 at 2:22 pm
      hbecker
      Participant

      Yay Karen!! So happy for you!

      Hazel

      • February 14, 2014 at 2:22 pm
      hbecker
      Participant

      Yay Karen!! So happy for you!

      Hazel

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