Ipi? Zelboraf? WBR? Combination of All?

This topic has 39 replies, 12 voices, and was last updated 11 years, 10 months ago by Owl.

Post

- July 13, 2013 at 5:10 am
- Quote
DeniseK
Participant
Hey everyone,

GREAT news today at Gamma Knife Doc. I had my first MRI Wednesdayt since SRS completed on June 18th. I only had SRS on 2 of the 7 brain mets I have. Having 7 was a shock, I only thought I had 1 but high def MRI showed 7. Anyway I had my first infusion of IPI on the 4th of July, it had only been in my system for 6 days. I"m also taking 1/2 dose of Z. So the GREAT news is that all 7 of my brain mets have shrunk approximately 50%!!

Hey everyone,

GREAT news today at Gamma Knife Doc. I had my first MRI Wednesdayt since SRS completed on June 18th. I only had SRS on 2 of the 7 brain mets I have. Having 7 was a shock, I only thought I had 1 but high def MRI showed 7. Anyway I had my first infusion of IPI on the 4th of July, it had only been in my system for 6 days. I"m also taking 1/2 dose of Z. So the GREAT news is that all 7 of my brain mets have shrunk approximately 50%!!

I thought, "how could that be?" I only had SRS on the 2 that were 1cm or larger. The doctor couldn't explain it either. He said maybe from WBR which was completed in January 2013 and they all grew in that time, or the cross rays from SRS radiation which wouldn't explain all of them shrinking because of their location, or from Ipi?? Doctor didn't think Ipi would work in 6 days but what else could explain this remarkable news?? As of today I am 7 weeks stable. I need 8 weeks for Anti PD 1 trial, but maybe I don't need trial?? Maybe Ipi is working for me?? I go in for next MRI the day of Gamma Knife which is July 25th. As long as there's no growth and still shrinking I would be eligible. 2nd infusion of Ipi scheduled day after gamma knife or day of.

What do you think? I hope that whatever is working keeps working and I can become NED/Remission!!

All my best to you all!!

Denise

Viewing 30 reply threads

Replies

- - July 13, 2013 at 12:44 pm
  - Quote
  Bubbles
  Participant
  Good for you, Denise!!!
  
  That is wonderful news. Perhaps you are experiencing what has been reported in scattered papers and what Dr. Weber mentioned to me. When at a visit and we asked about the effect of Nivolumab (BMS anti-PD1) on the brain….we were told that it probably doesn't work particularly well, but after the brain is irradiated, it can definitely prevent tumors from returning (and possibly get rid of what may be there) because of the absconal effect. Once an inflammatory environment is created, the drug will work… MUCH LIKE WHAT THEY ARE FINDING OUT ABOUT THE USE OF IPI AFTER RADIATION FOR BRAIN METS!!!!
  
  Sounds like between your WBR, SRS and ipi…that may well be what is working for you. Either way – may you continue to have great results.
  
  Yours, c
- - July 13, 2013 at 12:44 pm
  - Quote
  Bubbles
  Participant
  Good for you, Denise!!!
  
  That is wonderful news. Perhaps you are experiencing what has been reported in scattered papers and what Dr. Weber mentioned to me. When at a visit and we asked about the effect of Nivolumab (BMS anti-PD1) on the brain….we were told that it probably doesn't work particularly well, but after the brain is irradiated, it can definitely prevent tumors from returning (and possibly get rid of what may be there) because of the absconal effect. Once an inflammatory environment is created, the drug will work… MUCH LIKE WHAT THEY ARE FINDING OUT ABOUT THE USE OF IPI AFTER RADIATION FOR BRAIN METS!!!!
  
  Sounds like between your WBR, SRS and ipi…that may well be what is working for you. Either way – may you continue to have great results.
  
  Yours, c
- - July 13, 2013 at 12:44 pm
  - Quote
  Bubbles
  Participant
  Good for you, Denise!!!
  
  That is wonderful news. Perhaps you are experiencing what has been reported in scattered papers and what Dr. Weber mentioned to me. When at a visit and we asked about the effect of Nivolumab (BMS anti-PD1) on the brain….we were told that it probably doesn't work particularly well, but after the brain is irradiated, it can definitely prevent tumors from returning (and possibly get rid of what may be there) because of the absconal effect. Once an inflammatory environment is created, the drug will work… MUCH LIKE WHAT THEY ARE FINDING OUT ABOUT THE USE OF IPI AFTER RADIATION FOR BRAIN METS!!!!
  
  Sounds like between your WBR, SRS and ipi…that may well be what is working for you. Either way – may you continue to have great results.
  
  Yours, c
- - July 13, 2013 at 1:23 pm
  - Quote
  POW
  Participant
  Oh, Denise! That is such wonderful news! Thank you for sharing it. I note that you already saw Bryan's post from yesterday where he had a similar experience. I'm beginning to think that we are discovering a new treatment option. It's called "the kitchen sink cure"! Whatever… as long as it works, right?
  
  You bring up an important question– stay with ipi or move on to anti-PD1? Tough choice. I think you should do whatever your oncologist in San Francisco recommends (what is his name, by the way?). But if he could support either option, I think I would go for the anti-PD1 trial.
  
  I know that is risky– no treatment works for everyone, including anti-PD1. You may be a responder to ipi but a non-responder to anti-PD1. That would be a real bummer. However, it's really hard to get into an anti-PD1 trial, especially if you have brain mets. Ipi (Yervoy) is FDA approved and will always be available. So if your brain mets are stable for 8 weeks and you can get into an anti-PD1 trial (with crossover allowed if you get assigned to the chemo arm), then I would grab for that.
  
  If you wait until you see if you progress on ipi, you might have trouble getting into an anti-PD1 trial at that time. However, if you progress while on an anti-PD1 trial, you can easily switch to ipi with no waiting time or elegibility rules required. That's how I would look at it, anyway.
  
  Are you packing for Hawaii yet?
- - July 13, 2013 at 1:23 pm
  - Quote
  POW
  Participant
  Oh, Denise! That is such wonderful news! Thank you for sharing it. I note that you already saw Bryan's post from yesterday where he had a similar experience. I'm beginning to think that we are discovering a new treatment option. It's called "the kitchen sink cure"! Whatever… as long as it works, right?
  
  You bring up an important question– stay with ipi or move on to anti-PD1? Tough choice. I think you should do whatever your oncologist in San Francisco recommends (what is his name, by the way?). But if he could support either option, I think I would go for the anti-PD1 trial.
  
  I know that is risky– no treatment works for everyone, including anti-PD1. You may be a responder to ipi but a non-responder to anti-PD1. That would be a real bummer. However, it's really hard to get into an anti-PD1 trial, especially if you have brain mets. Ipi (Yervoy) is FDA approved and will always be available. So if your brain mets are stable for 8 weeks and you can get into an anti-PD1 trial (with crossover allowed if you get assigned to the chemo arm), then I would grab for that.
  
  If you wait until you see if you progress on ipi, you might have trouble getting into an anti-PD1 trial at that time. However, if you progress while on an anti-PD1 trial, you can easily switch to ipi with no waiting time or elegibility rules required. That's how I would look at it, anyway.
  
  Are you packing for Hawaii yet?
- - July 13, 2013 at 1:23 pm
  - Quote
  POW
  Participant
  Oh, Denise! That is such wonderful news! Thank you for sharing it. I note that you already saw Bryan's post from yesterday where he had a similar experience. I'm beginning to think that we are discovering a new treatment option. It's called "the kitchen sink cure"! Whatever… as long as it works, right?
  
  You bring up an important question– stay with ipi or move on to anti-PD1? Tough choice. I think you should do whatever your oncologist in San Francisco recommends (what is his name, by the way?). But if he could support either option, I think I would go for the anti-PD1 trial.
  
  I know that is risky– no treatment works for everyone, including anti-PD1. You may be a responder to ipi but a non-responder to anti-PD1. That would be a real bummer. However, it's really hard to get into an anti-PD1 trial, especially if you have brain mets. Ipi (Yervoy) is FDA approved and will always be available. So if your brain mets are stable for 8 weeks and you can get into an anti-PD1 trial (with crossover allowed if you get assigned to the chemo arm), then I would grab for that.
  
  If you wait until you see if you progress on ipi, you might have trouble getting into an anti-PD1 trial at that time. However, if you progress while on an anti-PD1 trial, you can easily switch to ipi with no waiting time or elegibility rules required. That's how I would look at it, anyway.
  
  Are you packing for Hawaii yet?
- - July 13, 2013 at 1:51 pm
  - Quote
  awillett1991
  Participant
  Congrats Denise! Thanks for posting! I’d say definitely stick with whatever is working!
  
  PD1 doesn’t work for everyone, and depending on the trial you could end up getting chemo for 12 wks before crossing over. Also there’s the wash out period for prior treatments to consider. Lots of timing issues.
  
  It seems like if you had SRS June 18th, you would be 3 1/2 wks stable. If you have gamma July 25th, wouldn’t the clock start all over again?
  
  So glad what you’re doing is working for you – that’s what is most important.
  
  Believe in the impossible!
- - July 13, 2013 at 1:51 pm
  - Quote
  awillett1991
  Participant
  Congrats Denise! Thanks for posting! I’d say definitely stick with whatever is working!
  
  PD1 doesn’t work for everyone, and depending on the trial you could end up getting chemo for 12 wks before crossing over. Also there’s the wash out period for prior treatments to consider. Lots of timing issues.
  
  It seems like if you had SRS June 18th, you would be 3 1/2 wks stable. If you have gamma July 25th, wouldn’t the clock start all over again?
  
  So glad what you’re doing is working for you – that’s what is most important.
  
  Believe in the impossible!
- - July 13, 2013 at 1:51 pm
  - Quote
  awillett1991
  Participant
  Congrats Denise! Thanks for posting! I’d say definitely stick with whatever is working!
  
  PD1 doesn’t work for everyone, and depending on the trial you could end up getting chemo for 12 wks before crossing over. Also there’s the wash out period for prior treatments to consider. Lots of timing issues.
  
  It seems like if you had SRS June 18th, you would be 3 1/2 wks stable. If you have gamma July 25th, wouldn’t the clock start all over again?
  
  So glad what you’re doing is working for you – that’s what is most important.
  
  Believe in the impossible!
- - July 13, 2013 at 2:40 pm
  - Quote
  Linny
  Participant
  Oh Denise, this is such great news!! Between your own upbeat attitude, good doctors, and the Good Lord, you are doing some serious butt-kicking. 7 weeks stable is great news, indeed.
  
  You go, girl!!!!
- - July 13, 2013 at 2:40 pm
  - Quote
  Linny
  Participant
  Oh Denise, this is such great news!! Between your own upbeat attitude, good doctors, and the Good Lord, you are doing some serious butt-kicking. 7 weeks stable is great news, indeed.
  
  You go, girl!!!!
- - July 13, 2013 at 2:40 pm
  - Quote
  Linny
  Participant
  Oh Denise, this is such great news!! Between your own upbeat attitude, good doctors, and the Good Lord, you are doing some serious butt-kicking. 7 weeks stable is great news, indeed.
  
  You go, girl!!!!
- - July 13, 2013 at 3:34 pm
  - Quote
  DeniseK
  Participant
  Hi Pat,
  
  I know it's confusing….I am not sure what to do but If I'm an Ipi responder it won't be long until Anti PD 1 is FDA approved. My specialist in San Fran Dr. David Minor said due to fast track it could be less than a year, so Anti PD 1 could be an option in the future I suppose. I could feel the Ipi working the day after the infusion because of my arm met but noone thought it was possible. I am very healthy besides the overwhelming mets throughout my body and brain. All my blood work comes back normal and doctors are amazed at how my body handles the tumor load. My melanoma didn't pass through my body via the lymph system it passed through my blood. My lymph nodes have never been affected. Maybe that has something to do with a strong immune system already then adding Ipi makes me super T Cell Woman!! LOL
  
  I don't know what the cause is but I'm going to continue on this road. I haven't had a PET scan yet and probably won't get one for a couple months so I guess I can go from there.
  
  Thank you so much for your reply, Your an amazing person that even though your brother didn't beat this your still helping those that need it.
  
  All my love Denise
- - July 13, 2013 at 3:56 pm
  - Quote
  DeniseK
  Participant
  Hi Amy,
  
  From what I was told it doesn't matter how you get your brain stable. It matters from MRI to MRI. For instance they are not going to say stop taking Zelboraf for 8 weeks and then take an MRI to see if your stable. The treatments in between MRI's don't matter. So from last MRI (May 25th) I showed 7 mets ranging from 1.1cm to 1mm, now I show 6mm to no evidence and only 6. So my brain is stable and the treatments are working. Gamma knife will help with those results maybe reducing my brain mets completely, showing clear MRI?? (HOPEFULLY) Then I'm eligible for any trial. I know there's a 4 week washout period so I am at a dilema. Do I continue with IPI? It appears it is working. Or do I go for the trial? Don't know if it will work.
  
  Your so very right about timing, it's really tricky to be eligible when they are recruiting and then qualify.
  
  I will confirm that information with my specialist, I go see him on the 18th. But I'm pretty sure that's the way it works.
  
  Thanks Amy,
  
  Denise
- - July 13, 2013 at 6:15 pm
  - Quote
  killmel
  Participant
  Hi Bubbles,
  
  Thank you somuch for sharing Dr.weber's theory about PD1 brain.
  
  Dr. Weber said, "it probably doesn't work particularly well, but after the brain is irradiated, it can definitely prevent tumors from returning "
  
  I am in the Merck pd1 trial. I was told by my doctor the PD1 does NOT cross the brain barrier. I am a little confused so please help me understand.
  
  After the brain is irradiated, how could PD1 "definitely prevent tumors from returning " ??? If PD1 does NOTcross the brain barrier, how does it work after the brain is irradiated,??? How does PD1 get to the brain?
  
  Thank for your help.
  
  Suzanne
- - July 13, 2013 at 9:27 pm
  - Quote
  SteveH230
  Participant
  Hi Denise,
  
  That's great news! My wife is finishing whole brain radiation on Monday and then we wait 4 weeks for a stable MRI to get into the phase II Merck anti-PD1 trial… hopefully. She finished IPI on 3/25 and the 4/22 MRI showed 2 tiny brain mets, so they did SRS to them. Then the next MRI in June showed the existing 2 spots were stable, but a new 4mm brain met had appeared, so they recommended doing whole brain radiation. It hasn't been too bad other than fatigue and nausea.
  
  After extensive research, I've found that the only anti-PD1 trials (phase II Merck & phase III BMS) currently recruiting for "prior-IPI" patients require that the patient has "failed" IPI after receiving at least two doses. We were hoping to try the phase I Merck to avoid the chemo possibility, but that one is no longer accruing for MEL, only the lung cancer cohorts. Unless you have found otherwise, I would think you'd need to keep going forward with the IPI for now.
  
  Our prayers and thoughts are with you for continued good news-
  
  Steve
- - July 13, 2013 at 9:27 pm
  - Quote
  SteveH230
  Participant
  Hi Denise,
  
  That's great news! My wife is finishing whole brain radiation on Monday and then we wait 4 weeks for a stable MRI to get into the phase II Merck anti-PD1 trial… hopefully. She finished IPI on 3/25 and the 4/22 MRI showed 2 tiny brain mets, so they did SRS to them. Then the next MRI in June showed the existing 2 spots were stable, but a new 4mm brain met had appeared, so they recommended doing whole brain radiation. It hasn't been too bad other than fatigue and nausea.
  
  After extensive research, I've found that the only anti-PD1 trials (phase II Merck & phase III BMS) currently recruiting for "prior-IPI" patients require that the patient has "failed" IPI after receiving at least two doses. We were hoping to try the phase I Merck to avoid the chemo possibility, but that one is no longer accruing for MEL, only the lung cancer cohorts. Unless you have found otherwise, I would think you'd need to keep going forward with the IPI for now.
  
  Our prayers and thoughts are with you for continued good news-
  
  Steve
- - July 13, 2013 at 9:27 pm
  - Quote
  SteveH230
  Participant
  Hi Denise,
  
  That's great news! My wife is finishing whole brain radiation on Monday and then we wait 4 weeks for a stable MRI to get into the phase II Merck anti-PD1 trial… hopefully. She finished IPI on 3/25 and the 4/22 MRI showed 2 tiny brain mets, so they did SRS to them. Then the next MRI in June showed the existing 2 spots were stable, but a new 4mm brain met had appeared, so they recommended doing whole brain radiation. It hasn't been too bad other than fatigue and nausea.
  
  After extensive research, I've found that the only anti-PD1 trials (phase II Merck & phase III BMS) currently recruiting for "prior-IPI" patients require that the patient has "failed" IPI after receiving at least two doses. We were hoping to try the phase I Merck to avoid the chemo possibility, but that one is no longer accruing for MEL, only the lung cancer cohorts. Unless you have found otherwise, I would think you'd need to keep going forward with the IPI for now.
  
  Our prayers and thoughts are with you for continued good news-
  
  Steve
- - July 13, 2013 at 11:36 pm
  - Quote
  BrianP
  Participant
  That's just awesome Denise. I'll pray that your fantastic results keep coming. Love reading updates like this. Gives hope to everybody.
  
  Brian
- - July 13, 2013 at 11:36 pm
  - Quote
  BrianP
  Participant
  That's just awesome Denise. I'll pray that your fantastic results keep coming. Love reading updates like this. Gives hope to everybody.
  
  Brian
- - July 13, 2013 at 11:36 pm
  - Quote
  BrianP
  Participant
  That's just awesome Denise. I'll pray that your fantastic results keep coming. Love reading updates like this. Gives hope to everybody.
  
  Brian
- - July 14, 2013 at 2:24 am
  - Quote
  NYKaren
  Participant
  Hello Denise. I’m so happy for you! The first time I did Ipi, although it was only partial response, I most definitely responded soon after the first infusion. Doc said rare but possible. Now, especially on top of your radiation, I would have no doubt!
  Who knows, maybe it’s the half-dose of Zel combined w Ipi??
  I also think that between BMS and Merck AND other companies moving ahead in the PD1 race, it will be easier, not harder, to get into trials between now and when it’s approved, if you need it.
  Karen
  - July 13, 2013 at 3:56 pm
    
    Quote
    DeniseK
    Participant
    
    Hi Amy,
    
    From what I was told it doesn't matter how you get your brain stable. It matters from MRI to MRI. For instance they are not going to say stop taking Zelboraf for 8 weeks and then take an MRI to see if your stable. The treatments in between MRI's don't matter. So from last MRI (May 25th) I showed 7 mets ranging from 1.1cm to 1mm, now I show 6mm to no evidence and only 6. So my brain is stable and the treatments are working. Gamma knife will help with those results maybe reducing my brain mets completely, showing clear MRI?? (HOPEFULLY) Then I'm eligible for any trial. I know there's a 4 week washout period so I am at a dilema. Do I continue with IPI? It appears it is working. Or do I go for the trial? Don't know if it will work.
    
    Your so very right about timing, it's really tricky to be eligible when they are recruiting and then qualify.
    
    I will confirm that information with my specialist, I go see him on the 18th. But I'm pretty sure that's the way it works.
    
    Thanks Amy,
    
    Denise
  - July 13, 2013 at 3:56 pm
    
    Quote
    DeniseK
    Participant
    
    Hi Amy,
    
    From what I was told it doesn't matter how you get your brain stable. It matters from MRI to MRI. For instance they are not going to say stop taking Zelboraf for 8 weeks and then take an MRI to see if your stable. The treatments in between MRI's don't matter. So from last MRI (May 25th) I showed 7 mets ranging from 1.1cm to 1mm, now I show 6mm to no evidence and only 6. So my brain is stable and the treatments are working. Gamma knife will help with those results maybe reducing my brain mets completely, showing clear MRI?? (HOPEFULLY) Then I'm eligible for any trial. I know there's a 4 week washout period so I am at a dilema. Do I continue with IPI? It appears it is working. Or do I go for the trial? Don't know if it will work.
    
    Your so very right about timing, it's really tricky to be eligible when they are recruiting and then qualify.
    
    I will confirm that information with my specialist, I go see him on the 18th. But I'm pretty sure that's the way it works.
    
    Thanks Amy,
    
    Denise
- - July 14, 2013 at 6:34 pm
  - Quote
  Tina D
  Participant
  OK……THIS IS AWESOME NEWS!!!!!!! YES!!!!
  
  Tina
- - July 14, 2013 at 6:34 pm
  - Quote
  Tina D
  Participant
  OK……THIS IS AWESOME NEWS!!!!!!! YES!!!!
  
  Tina
- - July 14, 2013 at 6:34 pm
  - Quote
  Tina D
  Participant
  OK……THIS IS AWESOME NEWS!!!!!!! YES!!!!
  
  Tina
- - July 15, 2013 at 1:43 am
  - Quote
  5374brian
  Participant
  Denise
  
  My wife did not get a positive response like we hoped from IPI. We looked at the Merck and BMS trials as our next options. They both have different qualifications and wait periods from different treatments. Make sure you discuss each with your doctor because during your wait things can change that might not allow you to qualify. Discuss the possiblities of both so you can make an informed decision. Then just remember the decision you make will be the right decision. That is one thing we have learned on our journey is we made a point that each decision will be the right decison and wont look back. We learned to treat today what we can because tomarrow can be another hurdle. We have had a major roller coaster ride since Dec. Just realize there will not be a wrong decision just all right decisions. Good luck and dont look back.
- - July 15, 2013 at 1:43 am
  - Quote
  5374brian
  Participant
  Denise
  
  My wife did not get a positive response like we hoped from IPI. We looked at the Merck and BMS trials as our next options. They both have different qualifications and wait periods from different treatments. Make sure you discuss each with your doctor because during your wait things can change that might not allow you to qualify. Discuss the possiblities of both so you can make an informed decision. Then just remember the decision you make will be the right decision. That is one thing we have learned on our journey is we made a point that each decision will be the right decison and wont look back. We learned to treat today what we can because tomarrow can be another hurdle. We have had a major roller coaster ride since Dec. Just realize there will not be a wrong decision just all right decisions. Good luck and dont look back.
- - July 15, 2013 at 1:43 am
  - Quote
  5374brian
  Participant
  Denise
  
  My wife did not get a positive response like we hoped from IPI. We looked at the Merck and BMS trials as our next options. They both have different qualifications and wait periods from different treatments. Make sure you discuss each with your doctor because during your wait things can change that might not allow you to qualify. Discuss the possiblities of both so you can make an informed decision. Then just remember the decision you make will be the right decision. That is one thing we have learned on our journey is we made a point that each decision will be the right decison and wont look back. We learned to treat today what we can because tomarrow can be another hurdle. We have had a major roller coaster ride since Dec. Just realize there will not be a wrong decision just all right decisions. Good luck and dont look back.
- - July 15, 2013 at 8:26 am
  - Quote
  Owl
  Participant
  Dear Denise,
  
  wonderful news! I am so happy for you and I hope things will continue like this.
  
  I agree with Brian, there ist no right or wrong, and you will never know what could have happened. In respect of Melanomo words like "could" or "if" are useless. I trust that you will go your way for very very long and enjoy life.
  
  All the best, Jenny
- - July 15, 2013 at 8:26 am
  - Quote
  Owl
  Participant
  Dear Denise,
  
  wonderful news! I am so happy for you and I hope things will continue like this.
  
  I agree with Brian, there ist no right or wrong, and you will never know what could have happened. In respect of Melanomo words like "could" or "if" are useless. I trust that you will go your way for very very long and enjoy life.
  
  All the best, Jenny
- - July 15, 2013 at 8:26 am
  - Quote
  Owl
  Participant
  Dear Denise,
  
  wonderful news! I am so happy for you and I hope things will continue like this.
  
  I agree with Brian, there ist no right or wrong, and you will never know what could have happened. In respect of Melanomo words like "could" or "if" are useless. I trust that you will go your way for very very long and enjoy life.
  
  All the best, Jenny
- - July 13, 2013 at 3:34 pm
  - Quote
  DeniseK
  Participant
  Hi Pat,
  
  I know it's confusing….I am not sure what to do but If I'm an Ipi responder it won't be long until Anti PD 1 is FDA approved. My specialist in San Fran Dr. David Minor said due to fast track it could be less than a year, so Anti PD 1 could be an option in the future I suppose. I could feel the Ipi working the day after the infusion because of my arm met but noone thought it was possible. I am very healthy besides the overwhelming mets throughout my body and brain. All my blood work comes back normal and doctors are amazed at how my body handles the tumor load. My melanoma didn't pass through my body via the lymph system it passed through my blood. My lymph nodes have never been affected. Maybe that has something to do with a strong immune system already then adding Ipi makes me super T Cell Woman!! LOL
  
  I don't know what the cause is but I'm going to continue on this road. I haven't had a PET scan yet and probably won't get one for a couple months so I guess I can go from there.
  
  Thank you so much for your reply, Your an amazing person that even though your brother didn't beat this your still helping those that need it.
  
  All my love Denise
- - July 13, 2013 at 3:34 pm
  - Quote
  DeniseK
  Participant
  Hi Pat,
  
  I know it's confusing….I am not sure what to do but If I'm an Ipi responder it won't be long until Anti PD 1 is FDA approved. My specialist in San Fran Dr. David Minor said due to fast track it could be less than a year, so Anti PD 1 could be an option in the future I suppose. I could feel the Ipi working the day after the infusion because of my arm met but noone thought it was possible. I am very healthy besides the overwhelming mets throughout my body and brain. All my blood work comes back normal and doctors are amazed at how my body handles the tumor load. My melanoma didn't pass through my body via the lymph system it passed through my blood. My lymph nodes have never been affected. Maybe that has something to do with a strong immune system already then adding Ipi makes me super T Cell Woman!! LOL
  
  I don't know what the cause is but I'm going to continue on this road. I haven't had a PET scan yet and probably won't get one for a couple months so I guess I can go from there.
  
  Thank you so much for your reply, Your an amazing person that even though your brother didn't beat this your still helping those that need it.
  
  All my love Denise
- - July 13, 2013 at 6:15 pm
  - Quote
  killmel
  Participant
  Hi Bubbles,
  
  Thank you somuch for sharing Dr.weber's theory about PD1 brain.
  
  Dr. Weber said, "it probably doesn't work particularly well, but after the brain is irradiated, it can definitely prevent tumors from returning "
  
  I am in the Merck pd1 trial. I was told by my doctor the PD1 does NOT cross the brain barrier. I am a little confused so please help me understand.
  
  After the brain is irradiated, how could PD1 "definitely prevent tumors from returning " ??? If PD1 does NOTcross the brain barrier, how does it work after the brain is irradiated,??? How does PD1 get to the brain?
  
  Thank for your help.
  
  Suzanne
- - July 13, 2013 at 6:15 pm
  - Quote
  killmel
  Participant
  Hi Bubbles,
  
  Thank you somuch for sharing Dr.weber's theory about PD1 brain.
  
  Dr. Weber said, "it probably doesn't work particularly well, but after the brain is irradiated, it can definitely prevent tumors from returning "
  
  I am in the Merck pd1 trial. I was told by my doctor the PD1 does NOT cross the brain barrier. I am a little confused so please help me understand.
  
  After the brain is irradiated, how could PD1 "definitely prevent tumors from returning " ??? If PD1 does NOTcross the brain barrier, how does it work after the brain is irradiated,??? How does PD1 get to the brain?
  
  Thank for your help.
  
  Suzanne
- - July 14, 2013 at 2:24 am
  - Quote
  NYKaren
  Participant
  Hello Denise. I’m so happy for you! The first time I did Ipi, although it was only partial response, I most definitely responded soon after the first infusion. Doc said rare but possible. Now, especially on top of your radiation, I would have no doubt!
  Who knows, maybe it’s the half-dose of Zel combined w Ipi??
  I also think that between BMS and Merck AND other companies moving ahead in the PD1 race, it will be easier, not harder, to get into trials between now and when it’s approved, if you need it.
  Karen
- - July 14, 2013 at 2:24 am
  - Quote
  NYKaren
  Participant
  Hello Denise. I’m so happy for you! The first time I did Ipi, although it was only partial response, I most definitely responded soon after the first infusion. Doc said rare but possible. Now, especially on top of your radiation, I would have no doubt!
  Who knows, maybe it’s the half-dose of Zel combined w Ipi??
  I also think that between BMS and Merck AND other companies moving ahead in the PD1 race, it will be easier, not harder, to get into trials between now and when it’s approved, if you need it.
  Karen