Good MRI result
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Good MRI result

› Forums › General Melanoma Community › Good MRI result

  • Post
    • August 7, 2013 at 12:22 am
    NYKaren
    Participant
    Hi everyone,
    I had MRI last week & saw neurosurgeon yesterday. He said all looks good. Tumors are dying and no new ones. Phew! I am tapering completely off steroids by end of week. I had a scare about 2 weeks ago, inflamed brain mets, more steroids & day in hospital to make sure all was ok. I had lost most of my ability to speak for a few hours & landed in the urgent care of NY Hospital. I couldn’t remember much, but I did manage to tell the doc what my doc’s name is: Kondziolka. How’s that for a mouthful?

    I have another set of CT scans in 2 week on the 20th, then finally will have blood work/and will sign informed consent on the 21st ( and be randomized) for Merck PD1 phase II trial. Boy I wish it could still be the phase I study, but at least if its chemo, it doesn’t have to stay that way. Now, since I did have the scans and know it (was) brain mets, and positive lymph nodes, and spots in lungs and possibly liver, i have the dabrafinib in my back pocket too. The mail order pharm says it’s on it’s way. It sounds like people are being approved for mono-therapy.

    I guess that’s it for now.
    Karen

Viewing 14 reply threads
  • Replies
      • August 7, 2013 at 3:12 am
      aldakota22
      Participant

      Thank God that things are going in the right direction.Happy to read such a positve post from you Karen.Keep the good news comming.All  the best.  Beat the Beast.    Al

      • August 7, 2013 at 3:12 am
      aldakota22
      Participant

      Thank God that things are going in the right direction.Happy to read such a positve post from you Karen.Keep the good news comming.All  the best.  Beat the Beast.    Al

      • August 7, 2013 at 3:12 am
      aldakota22
      Participant

      Thank God that things are going in the right direction.Happy to read such a positve post from you Karen.Keep the good news comming.All  the best.  Beat the Beast.    Al

      • August 7, 2013 at 7:59 am
      DeniseK
      Participant

      Hi Karen,

      I too am waiting for my Dabrafinib to come in the mail, he said I should get it this Thursday.  Since I'm still on Yervoy and 1/2 dose Z my doctor wants me to just transfer over to the Dab at 1/2 dose until I finish Ipi.  I have to wait another 8 weeks for stable brain Mri's, the gamma knife doc found 16 new brain mets but he zapped them all so I'm thinking I should be stable in 8 weeks (fingers crossed).  With your clinical trial are they asking you for a 4 week washout period and how long for stable brain scans?  Just curious because I'm hearing different time periods.

      Thanks Karen,

      Hang in there girl

      Denise

      • August 7, 2013 at 7:59 am
      DeniseK
      Participant

      Hi Karen,

      I too am waiting for my Dabrafinib to come in the mail, he said I should get it this Thursday.  Since I'm still on Yervoy and 1/2 dose Z my doctor wants me to just transfer over to the Dab at 1/2 dose until I finish Ipi.  I have to wait another 8 weeks for stable brain Mri's, the gamma knife doc found 16 new brain mets but he zapped them all so I'm thinking I should be stable in 8 weeks (fingers crossed).  With your clinical trial are they asking you for a 4 week washout period and how long for stable brain scans?  Just curious because I'm hearing different time periods.

      Thanks Karen,

      Hang in there girl

      Denise

      • August 7, 2013 at 7:59 am
      DeniseK
      Participant

      Hi Karen,

      I too am waiting for my Dabrafinib to come in the mail, he said I should get it this Thursday.  Since I'm still on Yervoy and 1/2 dose Z my doctor wants me to just transfer over to the Dab at 1/2 dose until I finish Ipi.  I have to wait another 8 weeks for stable brain Mri's, the gamma knife doc found 16 new brain mets but he zapped them all so I'm thinking I should be stable in 8 weeks (fingers crossed).  With your clinical trial are they asking you for a 4 week washout period and how long for stable brain scans?  Just curious because I'm hearing different time periods.

      Thanks Karen,

      Hang in there girl

      Denise

      • August 7, 2013 at 8:42 am
      NYKaren
      Participant
      Denise, I FINALLY figured out that there was nothing for me to ״wait” for, because I hadn’t actually signed the informed consent, so I wasn’t actually “in” the trial. I worried so about it, believe me.
      It’s taken me 2 years to get to this point with PD1, it feels either that this cannot finally be happening or it’s finally time for me to get the drug. The amount of disease i’ve progressed to is weighing me heavily toward the latter. I pray we get to be in this together and both kick Mel’s butt right to the ground. Frankly, I’m still shocked at how well Zel worked and how just as quickly I got to stage 4 with 11 brain mets.
      Karen
      • August 7, 2013 at 12:13 pm
      hbecker
      Participant

      Karen – just wanted to say I'm pulling for you! glad things are OK now and hope you get the right arm of the trial.

      Best –

      Hazel

      • August 7, 2013 at 12:13 pm
      hbecker
      Participant

      Karen – just wanted to say I'm pulling for you! glad things are OK now and hope you get the right arm of the trial.

      Best –

      Hazel

      • August 7, 2013 at 12:13 pm
      hbecker
      Participant

      Karen – just wanted to say I'm pulling for you! glad things are OK now and hope you get the right arm of the trial.

      Best –

      Hazel

      • August 7, 2013 at 1:02 pm
      awillett1991
      Participant
      Karen,

      So glad to hear you got some good news!! The horror of it all is sometimes overwhelming. Thanks for posting this update and keep fighting!!

      Amy

      • August 8, 2013 at 6:32 am
      DeniseK
      Participant

      I'm sending you all my positive thoughts your way Karen  🙂

      Hang in there!!

      • August 12, 2013 at 2:12 pm
      jag
      Participant

      Yay!

      Happy to hear it Karen, as "the wife" always told me, you are not allowed to die-hang in there also glad to see you are keeping your options open.  For the longest time I wanted Ippi, and didn't get it.  Maybe PD1 will do the trick and you will get it, but other things can work too.  I made it out alive before all of the newfangled stuff that is out there today.

      Best.

      John

      • August 12, 2013 at 2:12 pm
      jag
      Participant

      Yay!

      Happy to hear it Karen, as "the wife" always told me, you are not allowed to die-hang in there also glad to see you are keeping your options open.  For the longest time I wanted Ippi, and didn't get it.  Maybe PD1 will do the trick and you will get it, but other things can work too.  I made it out alive before all of the newfangled stuff that is out there today.

      Best.

      John

      • August 12, 2013 at 2:12 pm
      jag
      Participant

      Yay!

      Happy to hear it Karen, as "the wife" always told me, you are not allowed to die-hang in there also glad to see you are keeping your options open.  For the longest time I wanted Ippi, and didn't get it.  Maybe PD1 will do the trick and you will get it, but other things can work too.  I made it out alive before all of the newfangled stuff that is out there today.

      Best.

      John

      • August 7, 2013 at 8:42 am
      NYKaren
      Participant
      Denise, I FINALLY figured out that there was nothing for me to ״wait” for, because I hadn’t actually signed the informed consent, so I wasn’t actually “in” the trial. I worried so about it, believe me.
      It’s taken me 2 years to get to this point with PD1, it feels either that this cannot finally be happening or it’s finally time for me to get the drug. The amount of disease i’ve progressed to is weighing me heavily toward the latter. I pray we get to be in this together and both kick Mel’s butt right to the ground. Frankly, I’m still shocked at how well Zel worked and how just as quickly I got to stage 4 with 11 brain mets.
      Karen
      • August 7, 2013 at 8:42 am
      NYKaren
      Participant
      Denise, I FINALLY figured out that there was nothing for me to ״wait” for, because I hadn’t actually signed the informed consent, so I wasn’t actually “in” the trial. I worried so about it, believe me.
      It’s taken me 2 years to get to this point with PD1, it feels either that this cannot finally be happening or it’s finally time for me to get the drug. The amount of disease i’ve progressed to is weighing me heavily toward the latter. I pray we get to be in this together and both kick Mel’s butt right to the ground. Frankly, I’m still shocked at how well Zel worked and how just as quickly I got to stage 4 with 11 brain mets.
      Karen
      • August 7, 2013 at 1:02 pm
      awillett1991
      Participant
      Karen,

      So glad to hear you got some good news!! The horror of it all is sometimes overwhelming. Thanks for posting this update and keep fighting!!

      Amy

      • August 7, 2013 at 1:02 pm
      awillett1991
      Participant
      Karen,

      So glad to hear you got some good news!! The horror of it all is sometimes overwhelming. Thanks for posting this update and keep fighting!!

      Amy

      • August 8, 2013 at 6:32 am
      DeniseK
      Participant

      I'm sending you all my positive thoughts your way Karen  🙂

      Hang in there!!

      • August 8, 2013 at 6:32 am
      DeniseK
      Participant

      I'm sending you all my positive thoughts your way Karen  🙂

      Hang in there!!

Viewing 14 reply threads
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