Update on new tumors after IL2
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Update on new tumors after IL2

› Forums › General Melanoma Community › Update on new tumors after IL2

  • Post
    • June 6, 2013 at 3:37 pm
    ecc26
    Participant

    Hello,

    I posted a little while ago looking for others who might have had new tumors show up after an apparent response to IL2 and also asking about the bruising/inflamation that was happening with these new tumors. Thank you to those of you who responded. I do appreciate it. 

    Hello,

    I posted a little while ago looking for others who might have had new tumors show up after an apparent response to IL2 and also asking about the bruising/inflamation that was happening with these new tumors. Thank you to those of you who responded. I do appreciate it. 

    At the time of the last posting I had had a CT which ended up showing that all of the new tumors were subQ, which is the best possible scenario. On Monday I also had an MRI in preparation for an appointment at Dana-Farber (yesterday) to investigate whether I should persue clinical trials (specifically for the PD1 drugs or a PD1/Ipi combo trial as I am Ipi naive) or try Ipi first. When I picked up the imaging discs from the MRI, CT and the PET from before my last round of IL2 I read the MRI report and found that I have 7 brain mets with "several" in the leptomeninges (network of blood vessels, etc surrounding the brain) as well. These results disqualify me from the clinical trials and are too numerous for either surgery or gamma knife. It changed the conversation at Dana-Farber from "what trials are there and should I persue them?" to "is there anything I can do?".

    The advice was to pursue whole brain radiation concurrently with Ipi (to try and take advantage of the abscopal effect) in hopes of at least reducing/stabilizing the tumors to hopefully make me eligible for trials in a few months. I have an appointment with my local oncologist tomorrow where things will likely be set in motion. He gave me a paper (haven't read it yet) showing that Ipi works just as well in those with brain mets as in those without them, though it still has the same low response rate. We had a discussion about the abscopal effect and the possibility that it increases the chances of getting a response from Ipi (he gave me a paper on that too). None of this makes me any less concerned about the fact that my brain filling with tumors, or makes me feel any better about what they indicate prognostically. 

    I'm also trying to track down my BRAF results (or if it was ever done, as I was told it was). 

    Has anyone else done both radiation and ipi at the same time? If so, what were your side effects? I have avoided researching radiation so far in my process hoping I would never have to so I don't know as much about it- how long is a course for whole brain radiation? How long do the side effects (nausea, etc) last after your last dose? Do they dissipate quickly or hang around for a long time?

    Any input is appreciated,

    Eva

Viewing 14 reply threads
  • Replies
      • June 6, 2013 at 4:50 pm
      POW
      Participant

      Eva, I am sorry to hear that you have brain mets that disqualify you from most clinical trials. You do, however, seem to be getting expert medical advice and you are developing a thougtful plan of action. Hopefully, you will be able to get rid of the brain mets, or at least get them stabilized, and then qualify for a clinical trial. 

      The Melanoma International Foundation ( http://www.melanomainternational.org/ ) has an excellent webinar on their web site about using radiation to treat brain tumors. I suggest you check it out. 

      I know you are disappointed and probably frightened. But don't get too rattled. Get these brain mets stabilized and get back on track with your treatments. Oh, and definitely try to find out your BRAF status. Now that both BRAF inhibitors and MEK inhibitors are FDA approved, you may have more options than you thought. 

      I'll be praying for you! Please keep us posted about how things go with you.

      • June 6, 2013 at 4:50 pm
      POW
      Participant

      Eva, I am sorry to hear that you have brain mets that disqualify you from most clinical trials. You do, however, seem to be getting expert medical advice and you are developing a thougtful plan of action. Hopefully, you will be able to get rid of the brain mets, or at least get them stabilized, and then qualify for a clinical trial. 

      The Melanoma International Foundation ( http://www.melanomainternational.org/ ) has an excellent webinar on their web site about using radiation to treat brain tumors. I suggest you check it out. 

      I know you are disappointed and probably frightened. But don't get too rattled. Get these brain mets stabilized and get back on track with your treatments. Oh, and definitely try to find out your BRAF status. Now that both BRAF inhibitors and MEK inhibitors are FDA approved, you may have more options than you thought. 

      I'll be praying for you! Please keep us posted about how things go with you.

      • June 6, 2013 at 4:50 pm
      POW
      Participant

      Eva, I am sorry to hear that you have brain mets that disqualify you from most clinical trials. You do, however, seem to be getting expert medical advice and you are developing a thougtful plan of action. Hopefully, you will be able to get rid of the brain mets, or at least get them stabilized, and then qualify for a clinical trial. 

      The Melanoma International Foundation ( http://www.melanomainternational.org/ ) has an excellent webinar on their web site about using radiation to treat brain tumors. I suggest you check it out. 

      I know you are disappointed and probably frightened. But don't get too rattled. Get these brain mets stabilized and get back on track with your treatments. Oh, and definitely try to find out your BRAF status. Now that both BRAF inhibitors and MEK inhibitors are FDA approved, you may have more options than you thought. 

      I'll be praying for you! Please keep us posted about how things go with you.

      • June 6, 2013 at 5:21 pm
      DonnaK
      Participant
      I recently posted a similar question as my husband was diagnosed with 10-20 brain mets just as he was about to enroll in a til trial. He elected to try zelboraf first with the goal of getting the mets under control and then switch to ipi w WBR or SRS. We desperately want to get him on a pd1 trial but that may be a ways off. I don’t know much about it but I did just notice a couple clinical trials for lgx818, the Novartis braf inhibitor, which allowed non-symptomatic brain mets, for what thats worth. It is being offered with various combinations so it’s possible there could be prolonged efficacy…

      Good luck!!!
      Donna

      • June 6, 2013 at 5:21 pm
      DonnaK
      Participant
      I recently posted a similar question as my husband was diagnosed with 10-20 brain mets just as he was about to enroll in a til trial. He elected to try zelboraf first with the goal of getting the mets under control and then switch to ipi w WBR or SRS. We desperately want to get him on a pd1 trial but that may be a ways off. I don’t know much about it but I did just notice a couple clinical trials for lgx818, the Novartis braf inhibitor, which allowed non-symptomatic brain mets, for what thats worth. It is being offered with various combinations so it’s possible there could be prolonged efficacy…

      Good luck!!!
      Donna

      • June 6, 2013 at 5:21 pm
      DonnaK
      Participant
      I recently posted a similar question as my husband was diagnosed with 10-20 brain mets just as he was about to enroll in a til trial. He elected to try zelboraf first with the goal of getting the mets under control and then switch to ipi w WBR or SRS. We desperately want to get him on a pd1 trial but that may be a ways off. I don’t know much about it but I did just notice a couple clinical trials for lgx818, the Novartis braf inhibitor, which allowed non-symptomatic brain mets, for what thats worth. It is being offered with various combinations so it’s possible there could be prolonged efficacy…

      Good luck!!!
      Donna

      • June 6, 2013 at 8:10 pm
      DeniseK
      Participant

      Hi Eva,

      I have had WBR with Z not IPI, but here is my experience:

      I have 1 brain met 12mm right frontal lobe.  I went in for WBR end of Dec 2012 for 10 treatments of 300 rads.  The actuall radiation treatment doesn't hurt.  It's like getting an xray, very quick appointments everyday.  You will lose all your hair towards the final 2-3 treatments depending on how many rounds your doctor will be suggesting.  I didn't feel any side effects for about a week after the end of radiation.  Some people say they didn't get any side effects, but I did.  I was VERY tired, slept most of the day, and nauseated.  I was taking a good anti nausea pill that helped but still lost 20 pounds. Nausea for me lasted for about 2-3 months but it may have something to do with Z.  Also another side effect I had which probably had to do with Z is my head, forehead, and ears all broke out.  I had a huge pimple in the inside of my ear and I still have some dry whiteheads.  My doctor never heard of that so probably Z related.  Your head will get red/slightly burnt, your doctor should have creams to give you to help but it is mild and tolerable.  You may have to ask for the creams.  

      The worst part for me was the fatigue.  I felt like I was sleeping my life away.  

      This is just my experience.  Some people don't have any side effects.  It sounds a lot worse than it is.  

      My WBR shrunk my tumor from 12mm to 8mm with no new mets.  I am considered stable now and I am looking into trials.  I will be having SRS radiation June 10-14, next week, 5 rounds, to help kill off the existing cells.  If that doesn't work I can have surgery.

      You can only have WBR once in a year, I chose this option because I wanted to kill off any smaller lesions I may have and help prevent any future growth.  SRS or Gamma knife can be done at anytime.  

      Keep us posted on your experience.  It sounds like your in good hands.  It sux about the trials but I read this morning that the ANTI PD 1 was on a fast track for FDA approval.  It could be by the end of the year!!  Hang in there!!

      All my best,

      Denise

      • June 6, 2013 at 8:10 pm
      DeniseK
      Participant

      Hi Eva,

      I have had WBR with Z not IPI, but here is my experience:

      I have 1 brain met 12mm right frontal lobe.  I went in for WBR end of Dec 2012 for 10 treatments of 300 rads.  The actuall radiation treatment doesn't hurt.  It's like getting an xray, very quick appointments everyday.  You will lose all your hair towards the final 2-3 treatments depending on how many rounds your doctor will be suggesting.  I didn't feel any side effects for about a week after the end of radiation.  Some people say they didn't get any side effects, but I did.  I was VERY tired, slept most of the day, and nauseated.  I was taking a good anti nausea pill that helped but still lost 20 pounds. Nausea for me lasted for about 2-3 months but it may have something to do with Z.  Also another side effect I had which probably had to do with Z is my head, forehead, and ears all broke out.  I had a huge pimple in the inside of my ear and I still have some dry whiteheads.  My doctor never heard of that so probably Z related.  Your head will get red/slightly burnt, your doctor should have creams to give you to help but it is mild and tolerable.  You may have to ask for the creams.  

      The worst part for me was the fatigue.  I felt like I was sleeping my life away.  

      This is just my experience.  Some people don't have any side effects.  It sounds a lot worse than it is.  

      My WBR shrunk my tumor from 12mm to 8mm with no new mets.  I am considered stable now and I am looking into trials.  I will be having SRS radiation June 10-14, next week, 5 rounds, to help kill off the existing cells.  If that doesn't work I can have surgery.

      You can only have WBR once in a year, I chose this option because I wanted to kill off any smaller lesions I may have and help prevent any future growth.  SRS or Gamma knife can be done at anytime.  

      Keep us posted on your experience.  It sounds like your in good hands.  It sux about the trials but I read this morning that the ANTI PD 1 was on a fast track for FDA approval.  It could be by the end of the year!!  Hang in there!!

      All my best,

      Denise

      • June 6, 2013 at 8:10 pm
      DeniseK
      Participant

      Hi Eva,

      I have had WBR with Z not IPI, but here is my experience:

      I have 1 brain met 12mm right frontal lobe.  I went in for WBR end of Dec 2012 for 10 treatments of 300 rads.  The actuall radiation treatment doesn't hurt.  It's like getting an xray, very quick appointments everyday.  You will lose all your hair towards the final 2-3 treatments depending on how many rounds your doctor will be suggesting.  I didn't feel any side effects for about a week after the end of radiation.  Some people say they didn't get any side effects, but I did.  I was VERY tired, slept most of the day, and nauseated.  I was taking a good anti nausea pill that helped but still lost 20 pounds. Nausea for me lasted for about 2-3 months but it may have something to do with Z.  Also another side effect I had which probably had to do with Z is my head, forehead, and ears all broke out.  I had a huge pimple in the inside of my ear and I still have some dry whiteheads.  My doctor never heard of that so probably Z related.  Your head will get red/slightly burnt, your doctor should have creams to give you to help but it is mild and tolerable.  You may have to ask for the creams.  

      The worst part for me was the fatigue.  I felt like I was sleeping my life away.  

      This is just my experience.  Some people don't have any side effects.  It sounds a lot worse than it is.  

      My WBR shrunk my tumor from 12mm to 8mm with no new mets.  I am considered stable now and I am looking into trials.  I will be having SRS radiation June 10-14, next week, 5 rounds, to help kill off the existing cells.  If that doesn't work I can have surgery.

      You can only have WBR once in a year, I chose this option because I wanted to kill off any smaller lesions I may have and help prevent any future growth.  SRS or Gamma knife can be done at anytime.  

      Keep us posted on your experience.  It sounds like your in good hands.  It sux about the trials but I read this morning that the ANTI PD 1 was on a fast track for FDA approval.  It could be by the end of the year!!  Hang in there!!

      All my best,

      Denise

      • June 8, 2013 at 10:34 am
      jP85
      Participant
      Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

      Jenny

      • June 8, 2013 at 10:34 am
      jP85
      Participant
      Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

      Jenny

      • June 8, 2013 at 10:34 am
      jP85
      Participant
      Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

      Jenny

      • June 8, 2013 at 10:38 am
      jP85
      Participant
      Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

      Jenny

      • June 8, 2013 at 10:38 am
      jP85
      Participant
      Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

      Jenny

      • June 8, 2013 at 10:38 am
      jP85
      Participant
      Sorry for the delayed response I’ve actually been in hospital for the last week. I’ve recently had wbr for 40 brain mets at the same time as having the third dose of ipi. I’ve been pretty much in bed ever since mainly fatigue but also really bad indigestion and chest/back pain. I was in hospital for seemingly unrelated issues I have developed some bone mets which were causing pain. In terms of the two treatments together for me it has been headaches and fatigue which is starting to improve and had issues from ipi with eating etc which has made me quite weak.

      Jenny

      • June 6, 2013 at 9:34 pm
      ecc26
      Participant

      Thank you for your reply, it really helped a lot, even though you didn't have the Ipi. I have some comittments coming up (including teaching a 3 week summer school class) and have been worried about whether or not I would be able to fulfill them. From what you said, I just might be able to. Everyone tells me I have bigger things to worry about, but I like having something else to focus and work on- it helps me cope.

      Did you have Ipi before or are you tring to stay Ipi naive for trials? Just curious about the combo with Z instead of Ipi. 

      Yes, I was also aware that the Merk version of the anti PD-1 is fast tracked, but at my appointment yesterday the specialist I saw also said Merk had announced that they wanted to do at least one trial specifically for patients with brain mets and everyone was fighting over who would be able to offer that study at their facilities, so there may also be another option relatively soon for those of us in this situation. Just an FYI and something to keep your eye on.

      -Eva

      • June 6, 2013 at 9:34 pm
      ecc26
      Participant

      Thank you for your reply, it really helped a lot, even though you didn't have the Ipi. I have some comittments coming up (including teaching a 3 week summer school class) and have been worried about whether or not I would be able to fulfill them. From what you said, I just might be able to. Everyone tells me I have bigger things to worry about, but I like having something else to focus and work on- it helps me cope.

      Did you have Ipi before or are you tring to stay Ipi naive for trials? Just curious about the combo with Z instead of Ipi. 

      Yes, I was also aware that the Merk version of the anti PD-1 is fast tracked, but at my appointment yesterday the specialist I saw also said Merk had announced that they wanted to do at least one trial specifically for patients with brain mets and everyone was fighting over who would be able to offer that study at their facilities, so there may also be another option relatively soon for those of us in this situation. Just an FYI and something to keep your eye on.

      -Eva

      • June 6, 2013 at 9:34 pm
      ecc26
      Participant

      Thank you for your reply, it really helped a lot, even though you didn't have the Ipi. I have some comittments coming up (including teaching a 3 week summer school class) and have been worried about whether or not I would be able to fulfill them. From what you said, I just might be able to. Everyone tells me I have bigger things to worry about, but I like having something else to focus and work on- it helps me cope.

      Did you have Ipi before or are you tring to stay Ipi naive for trials? Just curious about the combo with Z instead of Ipi. 

      Yes, I was also aware that the Merk version of the anti PD-1 is fast tracked, but at my appointment yesterday the specialist I saw also said Merk had announced that they wanted to do at least one trial specifically for patients with brain mets and everyone was fighting over who would be able to offer that study at their facilities, so there may also be another option relatively soon for those of us in this situation. Just an FYI and something to keep your eye on.

      -Eva

      • June 6, 2013 at 10:28 pm
      DeniseK
      Participant

      Hi Eva,

      I'm so glad I could help.  I have not done Ipi.  It was an option my specialist mentioned a few months ago because I was not eligible for clinical trials.  I supposedly am eligible now since I have no disease progression my brain is considered stable.  I was told that you can have brain mets but they have to be "stable" for 12 weeks.  I want to do trials.  Not sure what is available but my goal is to be NED and in remission with no medication.  I want my life back.  I'm sure you know what I mean.  I too try to make plans to keep myself busy, it really helps.  You can't let melanoma absorb your life.

      Oh another thing that I still have is ringing in my ear, not all the time though.  Not sure if its from actual tumor or WBR.

      Keep fighting Eva!!

      Denise

      • June 6, 2013 at 10:28 pm
      DeniseK
      Participant

      Hi Eva,

      I'm so glad I could help.  I have not done Ipi.  It was an option my specialist mentioned a few months ago because I was not eligible for clinical trials.  I supposedly am eligible now since I have no disease progression my brain is considered stable.  I was told that you can have brain mets but they have to be "stable" for 12 weeks.  I want to do trials.  Not sure what is available but my goal is to be NED and in remission with no medication.  I want my life back.  I'm sure you know what I mean.  I too try to make plans to keep myself busy, it really helps.  You can't let melanoma absorb your life.

      Oh another thing that I still have is ringing in my ear, not all the time though.  Not sure if its from actual tumor or WBR.

      Keep fighting Eva!!

      Denise

      • June 6, 2013 at 10:28 pm
      DeniseK
      Participant

      Hi Eva,

      I'm so glad I could help.  I have not done Ipi.  It was an option my specialist mentioned a few months ago because I was not eligible for clinical trials.  I supposedly am eligible now since I have no disease progression my brain is considered stable.  I was told that you can have brain mets but they have to be "stable" for 12 weeks.  I want to do trials.  Not sure what is available but my goal is to be NED and in remission with no medication.  I want my life back.  I'm sure you know what I mean.  I too try to make plans to keep myself busy, it really helps.  You can't let melanoma absorb your life.

      Oh another thing that I still have is ringing in my ear, not all the time though.  Not sure if its from actual tumor or WBR.

      Keep fighting Eva!!

      Denise

      • June 6, 2013 at 11:02 pm
      ecc26
      Participant

      I don't know where you are or what centers you have reasonable access to, but if you're able to qualify for trials I would look into the anti PD-1 combined with Ipi that are just opening up since you're Ipi naive. If they aren't avaialbe at a place you can get to, look into the anti PD-1 trials (on their own without Ipi). Those are the most recent and most exciting trials and were the ones I was looking to join before I got the MRI results. On my way to my Dana-Farber appointment I read 2 articles in the June edition of the New England Journal of Medicine- one reporting results for just the anti PD-1 drug and one combining the drug with Ipi. Both have really exciting response rates with low rates of relatively mild side effects, but the PD-1/Ipi combo had better (and faster) response rates than the PD-1 by itself. These papers are the first to be published on trials for this drug/drug combo and have opened the door to several new trials that are just beginning so you should have an easier time finding one. 

      Good luck to you!

      • June 6, 2013 at 11:02 pm
      ecc26
      Participant

      I don't know where you are or what centers you have reasonable access to, but if you're able to qualify for trials I would look into the anti PD-1 combined with Ipi that are just opening up since you're Ipi naive. If they aren't avaialbe at a place you can get to, look into the anti PD-1 trials (on their own without Ipi). Those are the most recent and most exciting trials and were the ones I was looking to join before I got the MRI results. On my way to my Dana-Farber appointment I read 2 articles in the June edition of the New England Journal of Medicine- one reporting results for just the anti PD-1 drug and one combining the drug with Ipi. Both have really exciting response rates with low rates of relatively mild side effects, but the PD-1/Ipi combo had better (and faster) response rates than the PD-1 by itself. These papers are the first to be published on trials for this drug/drug combo and have opened the door to several new trials that are just beginning so you should have an easier time finding one. 

      Good luck to you!

      • June 6, 2013 at 11:02 pm
      ecc26
      Participant

      I don't know where you are or what centers you have reasonable access to, but if you're able to qualify for trials I would look into the anti PD-1 combined with Ipi that are just opening up since you're Ipi naive. If they aren't avaialbe at a place you can get to, look into the anti PD-1 trials (on their own without Ipi). Those are the most recent and most exciting trials and were the ones I was looking to join before I got the MRI results. On my way to my Dana-Farber appointment I read 2 articles in the June edition of the New England Journal of Medicine- one reporting results for just the anti PD-1 drug and one combining the drug with Ipi. Both have really exciting response rates with low rates of relatively mild side effects, but the PD-1/Ipi combo had better (and faster) response rates than the PD-1 by itself. These papers are the first to be published on trials for this drug/drug combo and have opened the door to several new trials that are just beginning so you should have an easier time finding one. 

      Good luck to you!

      • June 6, 2013 at 11:51 pm
      killmel
      Participant

      Hi ECC26,

       

      I am in the same boat as you. I was trying to get into a pd1 trial and my  MRI scan showed that I have a 6 mm brain met.

      I found your comment ver interesting about Merck & a future trial for patients with brain met.You stated   "Yes, I was also aware that the Merk version of the anti PD-1 is fast tracked, but at my appointment yesterday the specialist I saw also said Merk had announced that they wanted to do at least one trial specifically for patients with brain mets and everyone was fighting over who would be able to offer that study at their facilities"

      Who was the specialist at Dana Faber that told you Merck would like to do a pd1 trial for patients with Brain mets. I would appreciate the name of the person so that my doctor could call the specialist and find out more about a possible trial for patient with brain mets.

      It would be real helpful if you can post  the name and contact information for that specialist who told you about merck's future trial for patients with brain mets.  If you prefer to email me specialist name & contact info his is my email address: wendyp111@gmail.com  I want my doctor to follow up with your specialist.

      Thank for taking the time to give me the specialist's name & contact info.

      Wishing the best and being NED real soon

      wendy

      • June 6, 2013 at 11:51 pm
      killmel
      Participant

      Hi ECC26,

       

      I am in the same boat as you. I was trying to get into a pd1 trial and my  MRI scan showed that I have a 6 mm brain met.

      I found your comment ver interesting about Merck & a future trial for patients with brain met.You stated   "Yes, I was also aware that the Merk version of the anti PD-1 is fast tracked, but at my appointment yesterday the specialist I saw also said Merk had announced that they wanted to do at least one trial specifically for patients with brain mets and everyone was fighting over who would be able to offer that study at their facilities"

      Who was the specialist at Dana Faber that told you Merck would like to do a pd1 trial for patients with Brain mets. I would appreciate the name of the person so that my doctor could call the specialist and find out more about a possible trial for patient with brain mets.

      It would be real helpful if you can post  the name and contact information for that specialist who told you about merck's future trial for patients with brain mets.  If you prefer to email me specialist name & contact info his is my email address: wendyp111@gmail.com  I want my doctor to follow up with your specialist.

      Thank for taking the time to give me the specialist's name & contact info.

      Wishing the best and being NED real soon

      wendy

      • June 6, 2013 at 11:51 pm
      killmel
      Participant

      Hi ECC26,

       

      I am in the same boat as you. I was trying to get into a pd1 trial and my  MRI scan showed that I have a 6 mm brain met.

      I found your comment ver interesting about Merck & a future trial for patients with brain met.You stated   "Yes, I was also aware that the Merk version of the anti PD-1 is fast tracked, but at my appointment yesterday the specialist I saw also said Merk had announced that they wanted to do at least one trial specifically for patients with brain mets and everyone was fighting over who would be able to offer that study at their facilities"

      Who was the specialist at Dana Faber that told you Merck would like to do a pd1 trial for patients with Brain mets. I would appreciate the name of the person so that my doctor could call the specialist and find out more about a possible trial for patient with brain mets.

      It would be real helpful if you can post  the name and contact information for that specialist who told you about merck's future trial for patients with brain mets.  If you prefer to email me specialist name & contact info his is my email address: wendyp111@gmail.com  I want my doctor to follow up with your specialist.

      Thank for taking the time to give me the specialist's name & contact info.

      Wishing the best and being NED real soon

      wendy

      • June 7, 2013 at 1:52 am
      DeniseK
      Participant

      I will definately ask my specialist about this trial and look into it right away!  

      I just got a call from my Radiology Onc, he wants me to stop Z starting this Saturday while getting my SRS next week.  It's due to the lack of information regarding combining.  I told him I know what happens because I was doing Z during WBR.  He said the rash/breakout is not normal so that was probably due to Z.  

      • June 7, 2013 at 1:52 am
      DeniseK
      Participant

      I will definately ask my specialist about this trial and look into it right away!  

      I just got a call from my Radiology Onc, he wants me to stop Z starting this Saturday while getting my SRS next week.  It's due to the lack of information regarding combining.  I told him I know what happens because I was doing Z during WBR.  He said the rash/breakout is not normal so that was probably due to Z.  

      • June 7, 2013 at 1:52 am
      DeniseK
      Participant

      I will definately ask my specialist about this trial and look into it right away!  

      I just got a call from my Radiology Onc, he wants me to stop Z starting this Saturday while getting my SRS next week.  It's due to the lack of information regarding combining.  I told him I know what happens because I was doing Z during WBR.  He said the rash/breakout is not normal so that was probably due to Z.  

      • June 7, 2013 at 1:50 pm
      ecc26
      Participant

      I appologize if I was misleading with what I said in my reply, but saying they want to do a trial for people with brain mets and actually having a plan in motion or having a trial available are not the same thing. The oncologist had just returned from the ASCO meeting and that's where he had heard the information that they wanted to do a trial.

      As of now, there is no trial available, but various institutions are applying for the opportunity to create one. This does not mean that they will succeed in getting the trial or that Merk won't change it's mind about wanting to sponsor such a trial anywhere, just that there's hope that sometime in the future (he was hoping sooner, rather than later) there may be at least one trial available that will not exclude patients because of brain mets. Merk may very well decide that they don't need the trial and it will not be beneficial to them and so this may never actually happen. 

      I just thought I would pass along the hope that there might be something coming for those of us who are currently excluded and to give a heads up to look for it in case it does happen, but for right now it doesn't, and may never, exist and if/when it does there is no way to predict where it will be available or how many trials/slots there will be. It's not common, as we all know to include patients with brain mets, so any whisper of a chance is exciting to everyone and especially the chance that it will be an entire trial specifically looking at brain mets. I really hope it does happen and will be looking for it in the centers that are close enough for me to get to (including Dana-Farber, although he did not specifically say they were one of the centers trying to get the trial), but for now it's just hope. I hope you and your doctors will also keep an eye out for it's appearance and if it does become a reality I sincerely hope you are able to join.

      • June 7, 2013 at 1:50 pm
      ecc26
      Participant

      I appologize if I was misleading with what I said in my reply, but saying they want to do a trial for people with brain mets and actually having a plan in motion or having a trial available are not the same thing. The oncologist had just returned from the ASCO meeting and that's where he had heard the information that they wanted to do a trial.

      As of now, there is no trial available, but various institutions are applying for the opportunity to create one. This does not mean that they will succeed in getting the trial or that Merk won't change it's mind about wanting to sponsor such a trial anywhere, just that there's hope that sometime in the future (he was hoping sooner, rather than later) there may be at least one trial available that will not exclude patients because of brain mets. Merk may very well decide that they don't need the trial and it will not be beneficial to them and so this may never actually happen. 

      I just thought I would pass along the hope that there might be something coming for those of us who are currently excluded and to give a heads up to look for it in case it does happen, but for right now it doesn't, and may never, exist and if/when it does there is no way to predict where it will be available or how many trials/slots there will be. It's not common, as we all know to include patients with brain mets, so any whisper of a chance is exciting to everyone and especially the chance that it will be an entire trial specifically looking at brain mets. I really hope it does happen and will be looking for it in the centers that are close enough for me to get to (including Dana-Farber, although he did not specifically say they were one of the centers trying to get the trial), but for now it's just hope. I hope you and your doctors will also keep an eye out for it's appearance and if it does become a reality I sincerely hope you are able to join.

      • June 7, 2013 at 1:50 pm
      ecc26
      Participant

      I appologize if I was misleading with what I said in my reply, but saying they want to do a trial for people with brain mets and actually having a plan in motion or having a trial available are not the same thing. The oncologist had just returned from the ASCO meeting and that's where he had heard the information that they wanted to do a trial.

      As of now, there is no trial available, but various institutions are applying for the opportunity to create one. This does not mean that they will succeed in getting the trial or that Merk won't change it's mind about wanting to sponsor such a trial anywhere, just that there's hope that sometime in the future (he was hoping sooner, rather than later) there may be at least one trial available that will not exclude patients because of brain mets. Merk may very well decide that they don't need the trial and it will not be beneficial to them and so this may never actually happen. 

      I just thought I would pass along the hope that there might be something coming for those of us who are currently excluded and to give a heads up to look for it in case it does happen, but for right now it doesn't, and may never, exist and if/when it does there is no way to predict where it will be available or how many trials/slots there will be. It's not common, as we all know to include patients with brain mets, so any whisper of a chance is exciting to everyone and especially the chance that it will be an entire trial specifically looking at brain mets. I really hope it does happen and will be looking for it in the centers that are close enough for me to get to (including Dana-Farber, although he did not specifically say they were one of the centers trying to get the trial), but for now it's just hope. I hope you and your doctors will also keep an eye out for it's appearance and if it does become a reality I sincerely hope you are able to join.

      • June 8, 2013 at 2:01 pm
      ecc26
      Participant

      Thank you for your post and I'm sorry to hear you were in the hospital. I also have a bone met (in my spine) that caused an incredible amount of pian. Mine seemed to respond well to the IL2 and hasn't bothered me since March. Everything I've read or been told says that with Ipi tumors can swell significantly before they shrink, hopefully that is all that is happening with you and the reason for your pain. Hopefully soon they will start shrinking, the pain will subside and you will improve. 

      Thank you again for your post, it's very helpful to hear what others experience so I know what I might expect for myself. I wonder if having the radiation with the first Ipi treatment will make any difference in side effects? I guess I'll find out as I begin both on Monday.

      I wish you all the best and sincerely hope the Ipi works and you get a long lasting result

      • June 8, 2013 at 2:01 pm
      ecc26
      Participant

      Thank you for your post and I'm sorry to hear you were in the hospital. I also have a bone met (in my spine) that caused an incredible amount of pian. Mine seemed to respond well to the IL2 and hasn't bothered me since March. Everything I've read or been told says that with Ipi tumors can swell significantly before they shrink, hopefully that is all that is happening with you and the reason for your pain. Hopefully soon they will start shrinking, the pain will subside and you will improve. 

      Thank you again for your post, it's very helpful to hear what others experience so I know what I might expect for myself. I wonder if having the radiation with the first Ipi treatment will make any difference in side effects? I guess I'll find out as I begin both on Monday.

      I wish you all the best and sincerely hope the Ipi works and you get a long lasting result

      • June 8, 2013 at 2:01 pm
      ecc26
      Participant

      Thank you for your post and I'm sorry to hear you were in the hospital. I also have a bone met (in my spine) that caused an incredible amount of pian. Mine seemed to respond well to the IL2 and hasn't bothered me since March. Everything I've read or been told says that with Ipi tumors can swell significantly before they shrink, hopefully that is all that is happening with you and the reason for your pain. Hopefully soon they will start shrinking, the pain will subside and you will improve. 

      Thank you again for your post, it's very helpful to hear what others experience so I know what I might expect for myself. I wonder if having the radiation with the first Ipi treatment will make any difference in side effects? I guess I'll find out as I begin both on Monday.

      I wish you all the best and sincerely hope the Ipi works and you get a long lasting result

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