Ipi – Nivo Setback – Melanoma Research Foundation

This topic has 33 replies, 7 voices, and was last updated 10 years, 3 months ago by BrianP.

Post

- January 23, 2014 at 8:00 pm
- Quote
BrianP
Participant
I was so hoping to be able to post great news after my scans on the 22nd because I know how much my spirits are lifted when I hear the great reports. Unfortunately I received some disappointing news. I don't like posting this kind of news but as someone said on Tina D's recent update it's important to share the good and the bad experiences so we can all learn from the good and bad.

As some of you know I did the 6 infusions of Nivo and scans after that showed slight to moderate reduction and no new mets. Moved on to the IPI and received 3 of 4 infusions. 4th infusion was canceled due to headaches from pituitary inflamation. Scans on the 22nd showed stable to slight reduction in my current disease but numerous small mets have popped up in my lung. Wasn't sure if I was going to be able to continue on the trial due to the new disease but I found out last night that I will be continuing on trial and getting my next Nivo infusion on Monday. I'm still optimistic about my chances with Nivo. It was working before and I think it can work again and who knows the extra boost of ipi might make it even more effective. Just another bump in the road I hope. Next scan report I plan on lifting spirits!

Brian

Viewing 14 reply threads

Replies

- - January 23, 2014 at 8:22 pm
  - Quote
  Mat
  Participant
  Brian, thanks for posting. Sorry to hear about this setback. As you know, ipi doesn't start showing results for awhile and my recollection is that you just recently got your third dose. Also certainly seems encouraging that the investigators think you should stay on trial.
- - January 23, 2014 at 8:22 pm
  - Quote
  Mat
  Participant
  Brian, thanks for posting. Sorry to hear about this setback. As you know, ipi doesn't start showing results for awhile and my recollection is that you just recently got your third dose. Also certainly seems encouraging that the investigators think you should stay on trial.
- - January 23, 2014 at 8:22 pm
  - Quote
  Mat
  Participant
  Brian, thanks for posting. Sorry to hear about this setback. As you know, ipi doesn't start showing results for awhile and my recollection is that you just recently got your third dose. Also certainly seems encouraging that the investigators think you should stay on trial.
- - January 23, 2014 at 10:21 pm
  - Quote
  Jahendry12
  Participant
  Hang in there Brian. Stay optimistic and keep the faith. I'll keep you in my prayers.
  
  Julie
  - January 24, 2014 at 12:55 am
    
    Quote
    Maureen038
    Participant
    
    Brian,
    
    I'm sorry you didn't get the news you wanted, but I agree with Julie that you need to hang in there. I still think that nivolumbab can work again. I'm so glad that you get to stay in the trial. I will keep you in my prayers Brian and I hope that your next scans will be much better!
    
    Maureen
  - January 24, 2014 at 12:55 am
    
    Quote
    Maureen038
    Participant
    
    Brian,
    
    I'm sorry you didn't get the news you wanted, but I agree with Julie that you need to hang in there. I still think that nivolumbab can work again. I'm so glad that you get to stay in the trial. I will keep you in my prayers Brian and I hope that your next scans will be much better!
    
    Maureen
  - January 24, 2014 at 12:55 am
    
    Quote
    Maureen038
    Participant
    
    Brian,
    
    I'm sorry you didn't get the news you wanted, but I agree with Julie that you need to hang in there. I still think that nivolumbab can work again. I'm so glad that you get to stay in the trial. I will keep you in my prayers Brian and I hope that your next scans will be much better!
    
    Maureen
- - January 23, 2014 at 10:21 pm
  - Quote
  Jahendry12
  Participant
  Hang in there Brian. Stay optimistic and keep the faith. I'll keep you in my prayers.
  
  Julie
- - January 23, 2014 at 10:21 pm
  - Quote
  Jahendry12
  Participant
  Hang in there Brian. Stay optimistic and keep the faith. I'll keep you in my prayers.
  
  Julie
- - January 24, 2014 at 1:40 am
  - Quote
  Tina D
  Participant
  Hi Brian,
  
  Hate to hear, and I know it is disouraging, but I have to agree with what was said in regards to a couple of things. One: ipi response takes time to show, generally. And… if they are keeping you in the trial, that means they have optimism that you will have good response to it. Had to be a relief to get that phone call!
  
  How often are your scans in this trial?
  
  I'd say there is a good chance that you will show more response on the next set of scans
  
  Tina
- - January 24, 2014 at 1:40 am
  - Quote
  Tina D
  Participant
  Hi Brian,
  
  Hate to hear, and I know it is disouraging, but I have to agree with what was said in regards to a couple of things. One: ipi response takes time to show, generally. And… if they are keeping you in the trial, that means they have optimism that you will have good response to it. Had to be a relief to get that phone call!
  
  How often are your scans in this trial?
  
  I'd say there is a good chance that you will show more response on the next set of scans
  
  Tina
  - January 24, 2014 at 3:08 am
    
    Quote
    BrianP
    Participant
    
    Tina,
    
    Scans are scheduled every 12 weeks per the protocol but from conversations with my doctor I'm sure we won't be waiting that long for the next one. I'm thinking maybe 4 – 6 weeks until the next one.
    
    Brian
  - January 24, 2014 at 3:08 am
    
    Quote
    BrianP
    Participant
    
    Tina,
    
    Scans are scheduled every 12 weeks per the protocol but from conversations with my doctor I'm sure we won't be waiting that long for the next one. I'm thinking maybe 4 – 6 weeks until the next one.
    
    Brian
  - January 24, 2014 at 2:12 pm
    
    Quote
    Tina D
    Participant
    
    Keep us posted on when they are scheduled… I always like reminders to be praying. Prayers for good results for you. What a rollercoaster this journey always is & with so many periods of waiting.
    
    Tina
  - January 24, 2014 at 2:12 pm
    
    Quote
    Tina D
    Participant
    
    Keep us posted on when they are scheduled… I always like reminders to be praying. Prayers for good results for you. What a rollercoaster this journey always is & with so many periods of waiting.
    
    Tina
  - January 24, 2014 at 2:12 pm
    
    Quote
    Tina D
    Participant
    
    Keep us posted on when they are scheduled… I always like reminders to be praying. Prayers for good results for you. What a rollercoaster this journey always is & with so many periods of waiting.
    
    Tina
  - January 24, 2014 at 3:08 am
    
    Quote
    BrianP
    Participant
    
    Tina,
    
    Scans are scheduled every 12 weeks per the protocol but from conversations with my doctor I'm sure we won't be waiting that long for the next one. I'm thinking maybe 4 – 6 weeks until the next one.
    
    Brian
- - January 24, 2014 at 1:40 am
  - Quote
  Tina D
  Participant
  Hi Brian,
  
  Hate to hear, and I know it is disouraging, but I have to agree with what was said in regards to a couple of things. One: ipi response takes time to show, generally. And… if they are keeping you in the trial, that means they have optimism that you will have good response to it. Had to be a relief to get that phone call!
  
  How often are your scans in this trial?
  
  I'd say there is a good chance that you will show more response on the next set of scans
  
  Tina
- - January 24, 2014 at 3:09 pm
  - Quote
  kpcollins31
  Participant
  Sorry to hear this, Brian. The good news is you had some success with Nivo – hopefully, that can continue.
  
  Kevin
- - January 24, 2014 at 3:09 pm
  - Quote
  kpcollins31
  Participant
  Sorry to hear this, Brian. The good news is you had some success with Nivo – hopefully, that can continue.
  
  Kevin
  - January 24, 2014 at 6:33 pm
    
    Quote
    BrianP
    Participant
    
    Thanks Kevin. I sent you an email through the MPIP contact feature. Let me know if you didn't get it.
  - January 24, 2014 at 6:33 pm
    
    Quote
    BrianP
    Participant
    
    Thanks Kevin. I sent you an email through the MPIP contact feature. Let me know if you didn't get it.
  - January 25, 2014 at 2:19 am
    
    Quote
    kpcollins31
    Participant
    
    Nothing came through – checked my spam filter too. You can just send it directly to me… [email protected].
  - January 25, 2014 at 2:19 am
    
    Quote
    kpcollins31
    Participant
    
    Nothing came through – checked my spam filter too. You can just send it directly to me… [email protected].
  - January 25, 2014 at 2:19 am
    
    Quote
    kpcollins31
    Participant
    
    Nothing came through – checked my spam filter too. You can just send it directly to me… [email protected].
  - January 24, 2014 at 6:33 pm
    
    Quote
    BrianP
    Participant
    
    Thanks Kevin. I sent you an email through the MPIP contact feature. Let me know if you didn't get it.
- - January 24, 2014 at 3:09 pm
  - Quote
  kpcollins31
  Participant
  Sorry to hear this, Brian. The good news is you had some success with Nivo – hopefully, that can continue.
  
  Kevin
- - January 25, 2014 at 9:00 pm
  - Quote
  UrsulaZ
  Participant
  Brian — Thank you so much for the update. I've got you in my heart.
  
  That is a disappointing scan! But please don't give up. Our protocols were reversed, rememember? (i got the ipi first, and am only now getting the nivo). I wonder sometimes if my results were attributable to the ipi — and I was several weeks out from ipi before I had my first scan).
  
  I hope your kids are doing OK.
  
  When is your next imaging?
  
  Ursula
- - January 25, 2014 at 9:00 pm
  - Quote
  UrsulaZ
  Participant
  Brian — Thank you so much for the update. I've got you in my heart.
  
  That is a disappointing scan! But please don't give up. Our protocols were reversed, rememember? (i got the ipi first, and am only now getting the nivo). I wonder sometimes if my results were attributable to the ipi — and I was several weeks out from ipi before I had my first scan).
  
  I hope your kids are doing OK.
  
  When is your next imaging?
  
  Ursula
  - January 26, 2014 at 2:22 am
    
    Quote
    BrianP
    Participant
    
    Hey Ursula,
    
    I've been thinking about you lately and wondering how you were doing. I read your December blog and loved hearing that your scans continue to show good results and your GI problems are better (I also loved the picture!).
    
    For some reason I thought your were in the concurrent Ipi-Nivo trial. So you started with Ipi and now you will be Nivo until the end of the trial?
    
    My scans were obviously a blow to the gut but I really am optimistic that the nivo will work for me again. Having said that I have begun brainstorming other treatment options incase my next scans are not good. The next few weeks I hope to set up a couple consults with some melanoma specialist to discuss some of these options.
    
    My protocol calls for scans every 12 weeks but I suspect we will be scanning again in 4–6 weeks, 8 at the absolute latest. I will be discussing that with my oncologist on Monday.
    
    Kids are doing great. Boy is 3 going on 4, girl is 5 going on 16 🙂 . I'm enjoying everyday I have with them.
    
    Stay warm up there in Calgary. Take care.
    
    Brian
  - January 26, 2014 at 2:22 am
    
    Quote
    BrianP
    Participant
    
    Hey Ursula,
    
    I've been thinking about you lately and wondering how you were doing. I read your December blog and loved hearing that your scans continue to show good results and your GI problems are better (I also loved the picture!).
    
    For some reason I thought your were in the concurrent Ipi-Nivo trial. So you started with Ipi and now you will be Nivo until the end of the trial?
    
    My scans were obviously a blow to the gut but I really am optimistic that the nivo will work for me again. Having said that I have begun brainstorming other treatment options incase my next scans are not good. The next few weeks I hope to set up a couple consults with some melanoma specialist to discuss some of these options.
    
    My protocol calls for scans every 12 weeks but I suspect we will be scanning again in 4–6 weeks, 8 at the absolute latest. I will be discussing that with my oncologist on Monday.
    
    Kids are doing great. Boy is 3 going on 4, girl is 5 going on 16 🙂 . I'm enjoying everyday I have with them.
    
    Stay warm up there in Calgary. Take care.
    
    Brian
  - January 26, 2014 at 2:22 am
    
    Quote
    BrianP
    Participant
    
    Hey Ursula,
    
    I've been thinking about you lately and wondering how you were doing. I read your December blog and loved hearing that your scans continue to show good results and your GI problems are better (I also loved the picture!).
    
    For some reason I thought your were in the concurrent Ipi-Nivo trial. So you started with Ipi and now you will be Nivo until the end of the trial?
    
    My scans were obviously a blow to the gut but I really am optimistic that the nivo will work for me again. Having said that I have begun brainstorming other treatment options incase my next scans are not good. The next few weeks I hope to set up a couple consults with some melanoma specialist to discuss some of these options.
    
    My protocol calls for scans every 12 weeks but I suspect we will be scanning again in 4–6 weeks, 8 at the absolute latest. I will be discussing that with my oncologist on Monday.
    
    Kids are doing great. Boy is 3 going on 4, girl is 5 going on 16 🙂 . I'm enjoying everyday I have with them.
    
    Stay warm up there in Calgary. Take care.
    
    Brian
- - January 25, 2014 at 9:00 pm
  - Quote
  UrsulaZ
  Participant
  Brian — Thank you so much for the update. I've got you in my heart.
  
  That is a disappointing scan! But please don't give up. Our protocols were reversed, rememember? (i got the ipi first, and am only now getting the nivo). I wonder sometimes if my results were attributable to the ipi — and I was several weeks out from ipi before I had my first scan).
  
  I hope your kids are doing OK.
  
  When is your next imaging?
  
  Ursula