Help! New brain met on Merck Anti-PD1 trial
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Help! New brain met on Merck Anti-PD1 trial

› Forums › General Melanoma Community › Help! New brain met on Merck Anti-PD1 trial

  • Post
    • June 29, 2013 at 9:49 pm
    awillett1991
    Participant
    Sorry to be anon here, just scared. Recent MRI showed a new 5mm met near the outside area of my brain which had grown from 3mm on prior scan 2 mo ago to 5mm. I was “stable” to get Into the trial – as in they didn’t notice it. Dr says as long as they don’t treat it, I am still in the trial. is this really right? Oncologist not worried about it and rad onc says location is “good” he is fine w watch & wait as it seems to be growing very slowly. MRI states

    There is a 3rd enhancing lesion in the left parasagittal parietal lobe which measures 5 mm (previously measuring 3 mm).

    Very nervous abt this whole thing. Sounds nuts not to treat but need the trial.. also though, have other life threatening areas much bigger, inoperable, and more important and desperate for this PD1 to work having run thru the usual suspect drugs. Not very far into the trial – only a few doses.

    Any advice?

    THX!!

Viewing 2 reply threads
  • Replies
      • June 29, 2013 at 11:22 pm
      killmel
      Participant

      Hi,

       

      I am a little confused about your situation.

      Did you have a  3mm brain met that your Doctor did not notice prior to starting the trial ? Then you started the trial and on your first 12 week MRI & CT scans your doctor noticed the brain met which is now 5mm? Please correct me if misunderstood what you were saying?

      Did you Doctor tell you that the Merck Medical Director has confirmed that if you do not treat the brain met you can stay on the trial? 

      Did your doctor tell you that Merck's pd1 Mk-3475 can shrink your brain met. Since your brain met has grown from 3mm to 5mm in 2 months, it appears that pd1 is not working on your brain met. How many infusion have you had and are other tumors shrinking???

      • June 29, 2013 at 11:22 pm
      killmel
      Participant

      Hi,

       

      I am a little confused about your situation.

      Did you have a  3mm brain met that your Doctor did not notice prior to starting the trial ? Then you started the trial and on your first 12 week MRI & CT scans your doctor noticed the brain met which is now 5mm? Please correct me if misunderstood what you were saying?

      Did you Doctor tell you that the Merck Medical Director has confirmed that if you do not treat the brain met you can stay on the trial? 

      Did your doctor tell you that Merck's pd1 Mk-3475 can shrink your brain met. Since your brain met has grown from 3mm to 5mm in 2 months, it appears that pd1 is not working on your brain met. How many infusion have you had and are other tumors shrinking???

      • June 29, 2013 at 11:22 pm
      killmel
      Participant

      Hi,

       

      I am a little confused about your situation.

      Did you have a  3mm brain met that your Doctor did not notice prior to starting the trial ? Then you started the trial and on your first 12 week MRI & CT scans your doctor noticed the brain met which is now 5mm? Please correct me if misunderstood what you were saying?

      Did you Doctor tell you that the Merck Medical Director has confirmed that if you do not treat the brain met you can stay on the trial? 

      Did your doctor tell you that Merck's pd1 Mk-3475 can shrink your brain met. Since your brain met has grown from 3mm to 5mm in 2 months, it appears that pd1 is not working on your brain met. How many infusion have you had and are other tumors shrinking???

      • June 30, 2013 at 2:36 am
      awillett1991
      Participant
      radiologist missed it on prior scan. I have not made it to 12 wks but had an already scheduled followup MRI w radiation onc where this appeared in a detailed, thin slice, MRI.

      Don’t know anything about comm between dr and Merck.

      Dr says it is not working yet, but since no standard set of data exists before 12 wks, this is not clinically relevant and not to give up hope. Some have taken a little longer than 12 wks to respond.

      He didn’t tell me it can work in the brain, said we would watch/wait and address SRS if/when we need to.

      • June 30, 2013 at 2:36 am
      awillett1991
      Participant
      radiologist missed it on prior scan. I have not made it to 12 wks but had an already scheduled followup MRI w radiation onc where this appeared in a detailed, thin slice, MRI.

      Don’t know anything about comm between dr and Merck.

      Dr says it is not working yet, but since no standard set of data exists before 12 wks, this is not clinically relevant and not to give up hope. Some have taken a little longer than 12 wks to respond.

      He didn’t tell me it can work in the brain, said we would watch/wait and address SRS if/when we need to.

      • June 30, 2013 at 2:36 am
      awillett1991
      Participant
      radiologist missed it on prior scan. I have not made it to 12 wks but had an already scheduled followup MRI w radiation onc where this appeared in a detailed, thin slice, MRI.

      Don’t know anything about comm between dr and Merck.

      Dr says it is not working yet, but since no standard set of data exists before 12 wks, this is not clinically relevant and not to give up hope. Some have taken a little longer than 12 wks to respond.

      He didn’t tell me it can work in the brain, said we would watch/wait and address SRS if/when we need to.

      • June 30, 2013 at 2:43 am
      awillett1991
      Participant
      Well, not anonymous anymore…
      • June 30, 2013 at 2:43 am
      awillett1991
      Participant
      Well, not anonymous anymore…
      • June 30, 2013 at 2:43 am
      awillett1991
      Participant
      Well, not anonymous anymore…
      • July 1, 2013 at 12:23 am
      killmel
      Participant

      Amy,

      I reviewed your profile and you have been through such alot. You are amazing with a strong spirit.

      I do not know about the Merck trial and the information that your doctor gave you. My husband has done IPI and is a responder so we have not had to deal with clinical trials

      Since the brain met could be growing, I would be concerned about how long you have to wait for  you next scans (MRI & CT) for the clinical trial.  Based on the results of the MRI & CT scans, then you can determine if you are responding to the drug & if the brain met is growing. If you are responding to the drug, I would do whatever it takes to stay on the trial. Also, maybe this drug will also shrink your brain met?

      If I were you, I would also specifically ask your doctor if the Merck Medical director will let you stay on the trial if you do not treat your brain met. I read posts that people CANNOT stay of a trial with brain mets. However, each trial has different rules. I would also ask your doctor, if the brain met grows what size will the brain met have to grow to that you will be kicked off the trial. That way, you will know the size the brain tumor can grow before you can treat it.

      Just out of curiosity, did you have this 3mm  brain met at the time you were trying to qualify for the trial and your Doctor at Vanderbilt just did not see it??

      Amy, PLEASE keep us POSTED on what your doctor tells you. We can all learn from your experience. When is your next infusion and MRI and CT scans. 

      Good Luck,

      Marybeth

      • July 1, 2013 at 12:23 am
      killmel
      Participant

      Amy,

      I reviewed your profile and you have been through such alot. You are amazing with a strong spirit.

      I do not know about the Merck trial and the information that your doctor gave you. My husband has done IPI and is a responder so we have not had to deal with clinical trials

      Since the brain met could be growing, I would be concerned about how long you have to wait for  you next scans (MRI & CT) for the clinical trial.  Based on the results of the MRI & CT scans, then you can determine if you are responding to the drug & if the brain met is growing. If you are responding to the drug, I would do whatever it takes to stay on the trial. Also, maybe this drug will also shrink your brain met?

      If I were you, I would also specifically ask your doctor if the Merck Medical director will let you stay on the trial if you do not treat your brain met. I read posts that people CANNOT stay of a trial with brain mets. However, each trial has different rules. I would also ask your doctor, if the brain met grows what size will the brain met have to grow to that you will be kicked off the trial. That way, you will know the size the brain tumor can grow before you can treat it.

      Just out of curiosity, did you have this 3mm  brain met at the time you were trying to qualify for the trial and your Doctor at Vanderbilt just did not see it??

      Amy, PLEASE keep us POSTED on what your doctor tells you. We can all learn from your experience. When is your next infusion and MRI and CT scans. 

      Good Luck,

      Marybeth

      • July 1, 2013 at 12:23 am
      killmel
      Participant

      Amy,

      I reviewed your profile and you have been through such alot. You are amazing with a strong spirit.

      I do not know about the Merck trial and the information that your doctor gave you. My husband has done IPI and is a responder so we have not had to deal with clinical trials

      Since the brain met could be growing, I would be concerned about how long you have to wait for  you next scans (MRI & CT) for the clinical trial.  Based on the results of the MRI & CT scans, then you can determine if you are responding to the drug & if the brain met is growing. If you are responding to the drug, I would do whatever it takes to stay on the trial. Also, maybe this drug will also shrink your brain met?

      If I were you, I would also specifically ask your doctor if the Merck Medical director will let you stay on the trial if you do not treat your brain met. I read posts that people CANNOT stay of a trial with brain mets. However, each trial has different rules. I would also ask your doctor, if the brain met grows what size will the brain met have to grow to that you will be kicked off the trial. That way, you will know the size the brain tumor can grow before you can treat it.

      Just out of curiosity, did you have this 3mm  brain met at the time you were trying to qualify for the trial and your Doctor at Vanderbilt just did not see it??

      Amy, PLEASE keep us POSTED on what your doctor tells you. We can all learn from your experience. When is your next infusion and MRI and CT scans. 

      Good Luck,

      Marybeth

      • July 1, 2013 at 3:09 pm
      awillett1991
      Participant
      Another opinion now says met is not definitive, absolutely questionable based on size, position, and it is just brighter, not bigger, it could very well be an artery lighting up more based on the variables in the dye, higher concentration of it based on my anemia at the time, lots of things.

      Not going to worry about it any more, have much bigger issues anyway. Mistakes are made on scans all the time, melanoma is more gray than black & white.

      • July 1, 2013 at 3:09 pm
      awillett1991
      Participant
      Another opinion now says met is not definitive, absolutely questionable based on size, position, and it is just brighter, not bigger, it could very well be an artery lighting up more based on the variables in the dye, higher concentration of it based on my anemia at the time, lots of things.

      Not going to worry about it any more, have much bigger issues anyway. Mistakes are made on scans all the time, melanoma is more gray than black & white.

      • July 1, 2013 at 3:09 pm
      awillett1991
      Participant
      Another opinion now says met is not definitive, absolutely questionable based on size, position, and it is just brighter, not bigger, it could very well be an artery lighting up more based on the variables in the dye, higher concentration of it based on my anemia at the time, lots of things.

      Not going to worry about it any more, have much bigger issues anyway. Mistakes are made on scans all the time, melanoma is more gray than black & white.

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