NY Karen how are you doing?
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NY Karen how are you doing?

› Forums › General Melanoma Community › NY Karen how are you doing?

  • Post
    • May 21, 2013 at 1:55 pm
    awillett1991
    Participant
    Was wondering about you this morning. I hope all is well.

    Amy

    Was wondering about you this morning. I hope all is well.

    Amy

Viewing 5 reply threads
  • Replies
      • May 21, 2013 at 11:30 pm
      NYKaren
      Participant
      Hi, Amy. How kind of you to ask. I’m just getting over bronchitis so I’ve been sleeping a lot in my spare time.
      I’m on intermittent dosing of Zel (3/2) and got quite a scare last week. I was on day 10 of the 2 off weeks, and I felt, then saw, 2 mets on my scalp, my original tumor site. One was about 1mm in diameter and raised, fot me a sure sign of mel. Of course I freaked out, had my husband take some pics and emailed them to Drs Halpern & Wolchok at Sloan.
      Dr Wolchok told me to restart Zel and they would likely resolve in a week or two; they started getting smaller the next day. This made me realize how fragile and unsure I feel on Zel. Plus I had to stop and , Celebrexdue to stomach issues. I’m seeing Dr. Halpern tomorrow Wolchok after ASCO. WE’re discussing Merck’s PD1 dose escalation escalation trial, starting in about 2 weeks
      • May 21, 2013 at 11:30 pm
      NYKaren
      Participant
      Hi, Amy. How kind of you to ask. I’m just getting over bronchitis so I’ve been sleeping a lot in my spare time.
      I’m on intermittent dosing of Zel (3/2) and got quite a scare last week. I was on day 10 of the 2 off weeks, and I felt, then saw, 2 mets on my scalp, my original tumor site. One was about 1mm in diameter and raised, fot me a sure sign of mel. Of course I freaked out, had my husband take some pics and emailed them to Drs Halpern & Wolchok at Sloan.
      Dr Wolchok told me to restart Zel and they would likely resolve in a week or two; they started getting smaller the next day. This made me realize how fragile and unsure I feel on Zel. Plus I had to stop and , Celebrexdue to stomach issues. I’m seeing Dr. Halpern tomorrow Wolchok after ASCO. WE’re discussing Merck’s PD1 dose escalation escalation trial, starting in about 2 weeks
        • May 21, 2013 at 11:35 pm
        NYKaren
        Participant
        Sorry, typing went crazy! So we’ll be discussing and evaluating. I’ve been feeling somewhat scared and alone.
        Thanks for reaching out Amy. I’ll let you know how my appointments go.
        Karen
        • May 21, 2013 at 11:35 pm
        NYKaren
        Participant
        Sorry, typing went crazy! So we’ll be discussing and evaluating. I’ve been feeling somewhat scared and alone.
        Thanks for reaching out Amy. I’ll let you know how my appointments go.
        Karen
        • May 22, 2013 at 2:37 am
        awillett1991
        Participant
        Karen – you are not alone! I started Merck’s PD1 two weeks ago, so far so good and it was really easy to get into the trial.. I really think Zel has a whole depression component that comes with it, I told my oncologist this before.

        Hang in there! Keep fighting!!

        Amy

        • May 22, 2013 at 2:37 am
        awillett1991
        Participant
        Karen – you are not alone! I started Merck’s PD1 two weeks ago, so far so good and it was really easy to get into the trial.. I really think Zel has a whole depression component that comes with it, I told my oncologist this before.

        Hang in there! Keep fighting!!

        Amy

        • May 22, 2013 at 11:45 am
        NYKaren
        Participant
        Amy, are u in the Merck trial with no chemo arm? Do they tell you what dose you’re on?
        Thanks,
        Karen
        • May 22, 2013 at 11:45 am
        NYKaren
        Participant
        Amy, are u in the Merck trial with no chemo arm? Do they tell you what dose you’re on?
        Thanks,
        Karen
        • May 22, 2013 at 11:45 am
        NYKaren
        Participant
        Amy, are u in the Merck trial with no chemo arm? Do they tell you what dose you’re on?
        Thanks,
        Karen
        • May 22, 2013 at 12:45 pm
        awillett1991
        Participant
        Karen. – this one has the chemo but thanks to GOD and lots of prayers, I got randomized to PD1. Low or high dose is blinded though so not sure what I’m getting.
        • May 22, 2013 at 12:45 pm
        awillett1991
        Participant
        Karen. – this one has the chemo but thanks to GOD and lots of prayers, I got randomized to PD1. Low or high dose is blinded though so not sure what I’m getting.
        • May 22, 2013 at 12:45 pm
        awillett1991
        Participant
        Karen. – this one has the chemo but thanks to GOD and lots of prayers, I got randomized to PD1. Low or high dose is blinded though so not sure what I’m getting.
        • May 22, 2013 at 2:37 am
        awillett1991
        Participant
        Karen – you are not alone! I started Merck’s PD1 two weeks ago, so far so good and it was really easy to get into the trial.. I really think Zel has a whole depression component that comes with it, I told my oncologist this before.

        Hang in there! Keep fighting!!

        Amy

        • May 21, 2013 at 11:35 pm
        NYKaren
        Participant
        Sorry, typing went crazy! So we’ll be discussing and evaluating. I’ve been feeling somewhat scared and alone.
        Thanks for reaching out Amy. I’ll let you know how my appointments go.
        Karen
        • May 24, 2013 at 12:21 am
        kylez
        Participant

        Hi Karen, 

        I'm almost always stunned now, about what people here are going through. I've been very lucky by comparison it often feels like. I would freak out with SubQ's (and just about anything else). Z sounds like a battle all on its own too. Hope Dr. W. comes back all charged up after ASCO (if he needs to be charged up at all). And hope it's a a good plan you and he put together.  

        Side note, not relevant to how you're doing, but it seems like there's been few colitis posts lately. Started to feel like they were shining a "bat light" up into the sky, summoning you and Swannee and others to respond.

        • May 24, 2013 at 12:21 am
        kylez
        Participant

        Hi Karen, 

        I'm almost always stunned now, about what people here are going through. I've been very lucky by comparison it often feels like. I would freak out with SubQ's (and just about anything else). Z sounds like a battle all on its own too. Hope Dr. W. comes back all charged up after ASCO (if he needs to be charged up at all). And hope it's a a good plan you and he put together.  

        Side note, not relevant to how you're doing, but it seems like there's been few colitis posts lately. Started to feel like they were shining a "bat light" up into the sky, summoning you and Swannee and others to respond.

        • May 24, 2013 at 12:21 am
        kylez
        Participant

        Hi Karen, 

        I'm almost always stunned now, about what people here are going through. I've been very lucky by comparison it often feels like. I would freak out with SubQ's (and just about anything else). Z sounds like a battle all on its own too. Hope Dr. W. comes back all charged up after ASCO (if he needs to be charged up at all). And hope it's a a good plan you and he put together.  

        Side note, not relevant to how you're doing, but it seems like there's been few colitis posts lately. Started to feel like they were shining a "bat light" up into the sky, summoning you and Swannee and others to respond.

      • May 21, 2013 at 11:30 pm
      NYKaren
      Participant
      Hi, Amy. How kind of you to ask. I’m just getting over bronchitis so I’ve been sleeping a lot in my spare time.
      I’m on intermittent dosing of Zel (3/2) and got quite a scare last week. I was on day 10 of the 2 off weeks, and I felt, then saw, 2 mets on my scalp, my original tumor site. One was about 1mm in diameter and raised, fot me a sure sign of mel. Of course I freaked out, had my husband take some pics and emailed them to Drs Halpern & Wolchok at Sloan.
      Dr Wolchok told me to restart Zel and they would likely resolve in a week or two; they started getting smaller the next day. This made me realize how fragile and unsure I feel on Zel. Plus I had to stop and , Celebrexdue to stomach issues. I’m seeing Dr. Halpern tomorrow Wolchok after ASCO. WE’re discussing Merck’s PD1 dose escalation escalation trial, starting in about 2 weeks
      • May 22, 2013 at 2:38 am
      aldakota22
      Participant

      Karen, good to see your post.Overall  the news is somewhat  a mixed bag.Praying the docs get your treatment plan in synch. Remember you are on so many peoples prayer list. Hoping for the best. Keep us posted  after doc. visit. Beat the Beast.  Al

      • May 22, 2013 at 2:38 am
      aldakota22
      Participant

      Karen, good to see your post.Overall  the news is somewhat  a mixed bag.Praying the docs get your treatment plan in synch. Remember you are on so many peoples prayer list. Hoping for the best. Keep us posted  after doc. visit. Beat the Beast.  Al

      • May 22, 2013 at 2:38 am
      aldakota22
      Participant

      Karen, good to see your post.Overall  the news is somewhat  a mixed bag.Praying the docs get your treatment plan in synch. Remember you are on so many peoples prayer list. Hoping for the best. Keep us posted  after doc. visit. Beat the Beast.  Al

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