Update–Fingers crossed
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Update–Fingers crossed

› Forums › General Melanoma Community › Update–Fingers crossed

  • Post
    • June 11, 2013 at 1:41 pm
    NYKaren
    Participant
    Yesterday I met Dr. Anna Pavlick. Wow. What a lovely, smart powerhouse of a woman. If all goes well, I should start the Merck phase 2 PD1 trial at NYU. Dr. Wolchok sent me to her when Merck abruptly closed remaining seats of the phase 1 trial @ Sloan. Dr. P feels that the brand new tumor in my ear should show up as measurable disease on the MRI I will be having on 6/25, the end of the 28-day wash-out period from Zel. There are a few more mets that should show up as well. I wished for 1 to be large enough, now I’ve got a whole harvest going here, of course making me worry even more…

    Yesterday I met Dr. Anna Pavlick. Wow. What a lovely, smart powerhouse of a woman. If all goes well, I should start the Merck phase 2 PD1 trial at NYU. Dr. Wolchok sent me to her when Merck abruptly closed remaining seats of the phase 1 trial @ Sloan. Dr. P feels that the brand new tumor in my ear should show up as measurable disease on the MRI I will be having on 6/25, the end of the 28-day wash-out period from Zel. There are a few more mets that should show up as well. I wished for 1 to be large enough, now I’ve got a whole harvest going here, of course making me worry even more… What if I get the chemo arm, what if the PD1 doesn’t work, blah blah. You get the picture. But we both agreed that I’ll still have the 2 new GSK drugs & hopefully still Zel in my back pocket.
    I think that’s about it for now, I’ll keep you posted.
    Karen

Viewing 20 reply threads
  • Replies
      • June 11, 2013 at 4:14 pm
      POW
      Participant

      Karen, I'm so glad that you found another site for an anti-PD1 trial so quickly and that you like and trust Dr. Pavlick. That's wonderful! Yes, you have some scarey uncertainties here, but you also have good reasons to be optimistic. And as you say, even if this does not work you still have a few more aces up your sleeve. Fingers crossed for you, indeed!

      • June 11, 2013 at 4:14 pm
      POW
      Participant

      Karen, I'm so glad that you found another site for an anti-PD1 trial so quickly and that you like and trust Dr. Pavlick. That's wonderful! Yes, you have some scarey uncertainties here, but you also have good reasons to be optimistic. And as you say, even if this does not work you still have a few more aces up your sleeve. Fingers crossed for you, indeed!

      • June 11, 2013 at 4:14 pm
      POW
      Participant

      Karen, I'm so glad that you found another site for an anti-PD1 trial so quickly and that you like and trust Dr. Pavlick. That's wonderful! Yes, you have some scarey uncertainties here, but you also have good reasons to be optimistic. And as you say, even if this does not work you still have a few more aces up your sleeve. Fingers crossed for you, indeed!

      • June 12, 2013 at 12:23 am
      aldakota22
      Participant

      Karen got my  fingers and toes crossed for you. You are in very competent & compassionate care with Dr.Anna Pavaluck.Hoping your PMA and work load will keep you too busy to worry.Know you are in my prayers .Beat the Beast.  Al

      • June 12, 2013 at 12:23 am
      aldakota22
      Participant

      Karen got my  fingers and toes crossed for you. You are in very competent & compassionate care with Dr.Anna Pavaluck.Hoping your PMA and work load will keep you too busy to worry.Know you are in my prayers .Beat the Beast.  Al

      • June 12, 2013 at 12:23 am
      aldakota22
      Participant

      Karen got my  fingers and toes crossed for you. You are in very competent & compassionate care with Dr.Anna Pavaluck.Hoping your PMA and work load will keep you too busy to worry.Know you are in my prayers .Beat the Beast.  Al

      • June 12, 2013 at 3:01 am
      King
      Participant

      Karen,

       

      I'm thinking of you and will keep my fingers and toes crossed.  You've been in one long battle.  Are you having pain from the tumor in your ear?  It sounds so painful for some reason.  How was it found?

      I follow your posts and wishing you the best.

       

      Stay Strong
      King

      Stage IV  7/05 Liver mets

      • June 12, 2013 at 3:01 am
      King
      Participant

      Karen,

       

      I'm thinking of you and will keep my fingers and toes crossed.  You've been in one long battle.  Are you having pain from the tumor in your ear?  It sounds so painful for some reason.  How was it found?

      I follow your posts and wishing you the best.

       

      Stay Strong
      King

      Stage IV  7/05 Liver mets

      • June 12, 2013 at 3:01 am
      King
      Participant

      Karen,

       

      I'm thinking of you and will keep my fingers and toes crossed.  You've been in one long battle.  Are you having pain from the tumor in your ear?  It sounds so painful for some reason.  How was it found?

      I follow your posts and wishing you the best.

       

      Stay Strong
      King

      Stage IV  7/05 Liver mets

      • June 12, 2013 at 11:12 am
      Tina D
      Participant

      So glad to hear you love this new Dr! Also happy to hear the hopeful news about this trial for you. I am sure the 25th seems like an eternity away from now, I do hope it goes quickly for you!! 

      Thank you forkeeping us updated and will look forward to hearing good news!!

      Tina

      • June 12, 2013 at 11:12 am
      Tina D
      Participant

      So glad to hear you love this new Dr! Also happy to hear the hopeful news about this trial for you. I am sure the 25th seems like an eternity away from now, I do hope it goes quickly for you!! 

      Thank you forkeeping us updated and will look forward to hearing good news!!

      Tina

      • June 12, 2013 at 11:12 am
      Tina D
      Participant

      So glad to hear you love this new Dr! Also happy to hear the hopeful news about this trial for you. I am sure the 25th seems like an eternity away from now, I do hope it goes quickly for you!! 

      Thank you forkeeping us updated and will look forward to hearing good news!!

      Tina

      • June 24, 2013 at 9:22 pm
      kylez
      Participant
      Hi Karen,
      Fingers crossed for your scans tomorrow and how things have been going so far.
      • June 24, 2013 at 9:22 pm
      kylez
      Participant
      Hi Karen,
      Fingers crossed for your scans tomorrow and how things have been going so far.
      • June 24, 2013 at 9:22 pm
      kylez
      Participant
      Hi Karen,
      Fingers crossed for your scans tomorrow and how things have been going so far.
      • June 24, 2013 at 11:37 pm
      Candi13
      Participant
      Hi karen,
       
      Just wanted to wish you luck with your scans.
       
      My husband is considering Merck pd1 if ipi fails.
       
      Please tell me what is the "testing kit" from Merck used for?
       
      A
      • June 24, 2013 at 11:37 pm
      Candi13
      Participant
      Hi karen,
       
      Just wanted to wish you luck with your scans.
       
      My husband is considering Merck pd1 if ipi fails.
       
      Please tell me what is the "testing kit" from Merck used for?
       
      A
      • June 24, 2013 at 11:37 pm
      Candi13
      Participant
      Hi karen,
       
      Just wanted to wish you luck with your scans.
       
      My husband is considering Merck pd1 if ipi fails.
       
      Please tell me what is the "testing kit" from Merck used for?
       
      A
      • June 25, 2013 at 1:35 pm
      Richard_K
      Participant

      Karen, So hard to believe about the out of date kit and not being able to get a replacement sent overnight.  Friday will be here soon but I know you will feel like it’s a month away – stay strong.

      Glad you like Dr. Pavlick, I’ve been with her for almost 3 ½ years and I actually look forward to going to my appointments with her – she’s quite an individual.  Best of luck to you.

      "Unable to use my name"

      • June 25, 2013 at 1:35 pm
      Richard_K
      Participant

      Karen, So hard to believe about the out of date kit and not being able to get a replacement sent overnight.  Friday will be here soon but I know you will feel like it’s a month away – stay strong.

      Glad you like Dr. Pavlick, I’ve been with her for almost 3 ½ years and I actually look forward to going to my appointments with her – she’s quite an individual.  Best of luck to you.

      "Unable to use my name"

      • June 25, 2013 at 1:35 pm
      Richard_K
      Participant

      Karen, So hard to believe about the out of date kit and not being able to get a replacement sent overnight.  Friday will be here soon but I know you will feel like it’s a month away – stay strong.

      Glad you like Dr. Pavlick, I’ve been with her for almost 3 ½ years and I actually look forward to going to my appointments with her – she’s quite an individual.  Best of luck to you.

      "Unable to use my name"

      • June 11, 2013 at 4:23 pm
      NYKaren
      Participant
      Thank you my friend… I just came from ENT and he’s afraid the Mel’s now behind ear drum, which is uncomfortably close to brain…I have to keep telling myself what I tell my kids…don’t worry till it’s time to worry.
      It’s a good thing I’m busy at work next couple of weeks.
      • June 11, 2013 at 4:23 pm
      NYKaren
      Participant
      Thank you my friend… I just came from ENT and he’s afraid the Mel’s now behind ear drum, which is uncomfortably close to brain…I have to keep telling myself what I tell my kids…don’t worry till it’s time to worry.
      It’s a good thing I’m busy at work next couple of weeks.
      • June 11, 2013 at 4:23 pm
      NYKaren
      Participant
      Thank you my friend… I just came from ENT and he’s afraid the Mel’s now behind ear drum, which is uncomfortably close to brain…I have to keep telling myself what I tell my kids…don’t worry till it’s time to worry.
      It’s a good thing I’m busy at work next couple of weeks.
      • June 24, 2013 at 9:50 pm
      NYKaren
      Participant
      Hi Kyle,
      How nice of you to check on me. I’m still on for scans for tomorrow, but Merck sent Dr. P’s office EXPIRED testing kits! To say that I’m upset would be the understatement of the century. I tried to call Merck’s CEO, not successfully. They should have a kit there by Friday, Dr. Pavlick said she’d call the second it gets there, and luckily I work nearby.
      Meanwhile, I have more tumors in my ear, so I really hope this stuff works. If it doesn’t, I guess the next step will be back on Zel. I hear the BRAF/MEK combo doesn’t work too well after Zel. I guess we shall see.
      Karen
      • June 24, 2013 at 9:50 pm
      NYKaren
      Participant
      Hi Kyle,
      How nice of you to check on me. I’m still on for scans for tomorrow, but Merck sent Dr. P’s office EXPIRED testing kits! To say that I’m upset would be the understatement of the century. I tried to call Merck’s CEO, not successfully. They should have a kit there by Friday, Dr. Pavlick said she’d call the second it gets there, and luckily I work nearby.
      Meanwhile, I have more tumors in my ear, so I really hope this stuff works. If it doesn’t, I guess the next step will be back on Zel. I hear the BRAF/MEK combo doesn’t work too well after Zel. I guess we shall see.
      Karen
      • June 24, 2013 at 9:50 pm
      NYKaren
      Participant
      Hi Kyle,
      How nice of you to check on me. I’m still on for scans for tomorrow, but Merck sent Dr. P’s office EXPIRED testing kits! To say that I’m upset would be the understatement of the century. I tried to call Merck’s CEO, not successfully. They should have a kit there by Friday, Dr. Pavlick said she’d call the second it gets there, and luckily I work nearby.
      Meanwhile, I have more tumors in my ear, so I really hope this stuff works. If it doesn’t, I guess the next step will be back on Zel. I hear the BRAF/MEK combo doesn’t work too well after Zel. I guess we shall see.
      Karen
      • June 24, 2013 at 9:53 pm
      NYKaren
      Participant
      I wish I could understand why Merck couldn’t just overnight new kits. I hate them right now.
      • June 24, 2013 at 9:53 pm
      NYKaren
      Participant
      I wish I could understand why Merck couldn’t just overnight new kits. I hate them right now.
      • June 24, 2013 at 9:53 pm
      NYKaren
      Participant
      I wish I could understand why Merck couldn’t just overnight new kits. I hate them right now.
      • June 25, 2013 at 2:24 am
      NYKaren
      Participant
      It contains the tubes that one’s drawn blood goes into.
      I keep telling myself that it’s for the best, that I’ll get a better randomization (i.e. that I’ll get one of the 2 doses of PD1 instead of chemo, etc.). I’m really just playing mind games with myself getting through this waiting game.
      Karen
      • June 25, 2013 at 2:24 am
      NYKaren
      Participant
      It contains the tubes that one’s drawn blood goes into.
      I keep telling myself that it’s for the best, that I’ll get a better randomization (i.e. that I’ll get one of the 2 doses of PD1 instead of chemo, etc.). I’m really just playing mind games with myself getting through this waiting game.
      Karen
      • June 25, 2013 at 2:24 am
      NYKaren
      Participant
      It contains the tubes that one’s drawn blood goes into.
      I keep telling myself that it’s for the best, that I’ll get a better randomization (i.e. that I’ll get one of the 2 doses of PD1 instead of chemo, etc.). I’m really just playing mind games with myself getting through this waiting game.
      Karen
      • June 25, 2013 at 7:30 pm
      awillett1991
      Participant
      Mind games are ok. Stay strong and don’t let this frustrating little setback get to you! Good luck on your scans Karen!

      Amy

      • June 25, 2013 at 7:30 pm
      awillett1991
      Participant
      Mind games are ok. Stay strong and don’t let this frustrating little setback get to you! Good luck on your scans Karen!

      Amy

      • June 25, 2013 at 7:30 pm
      awillett1991
      Participant
      Mind games are ok. Stay strong and don’t let this frustrating little setback get to you! Good luck on your scans Karen!

      Amy

      • June 26, 2013 at 3:33 pm
      NYKaren
      Participant

      Hi "unable to use your name," I'm glad all is well with you.

      I have a call into Dr. P  for the results of yesterday's 3 MRI's and 1 CT scan.

      How hard could it possibly be to overnight a new kit??????????

      I have my doubts about the new kits arriving by Friday…the person told her "they SHOULD be here by Friday", which to me says Monday or Tuesday.  I hope I'm wrong!

      Thanks,

      I'll let you know what happens.

      Karen

      • June 26, 2013 at 3:33 pm
      NYKaren
      Participant

      Hi "unable to use your name," I'm glad all is well with you.

      I have a call into Dr. P  for the results of yesterday's 3 MRI's and 1 CT scan.

      How hard could it possibly be to overnight a new kit??????????

      I have my doubts about the new kits arriving by Friday…the person told her "they SHOULD be here by Friday", which to me says Monday or Tuesday.  I hope I'm wrong!

      Thanks,

      I'll let you know what happens.

      Karen

      • June 26, 2013 at 3:33 pm
      NYKaren
      Participant

      Hi "unable to use your name," I'm glad all is well with you.

      I have a call into Dr. P  for the results of yesterday's 3 MRI's and 1 CT scan.

      How hard could it possibly be to overnight a new kit??????????

      I have my doubts about the new kits arriving by Friday…the person told her "they SHOULD be here by Friday", which to me says Monday or Tuesday.  I hope I'm wrong!

      Thanks,

      I'll let you know what happens.

      Karen

Viewing 20 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics