› Forums › General Melanoma Community › Ipi-Nivo and 1,000 Days
- This topic has 42 replies, 8 voices, and was last updated 8 years, 1 month ago by
Maria C.
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- August 11, 2016 at 3:56 pm
Well, it's been more than a thousand days (3 years) since my stage IV diagnosis with a heavy tumor burden. My diagnosis came somewhat out of the blue (I didn't recognize the few symptoms I had) after being stage I ten years earlier. Trust me, at diagnosis, no medical professional said to me–"don't worry, you have at least 3 great years left." I've had (and may still have) multiple liver tumors and I've had 3 brain tumors. If you read this forum and other sources, you know that those can be signs of a poor prognosis.
Who knows what the future holds? I take it one day at a time (or try to). On this day, I'm happy to say that I have another set of stable scans under my belt since starting ipi-nivo in January. I feel very fortunate to be where I'm at. I don't assume for a minute that I have this thing beat. Rather, I assume the opposite–my resilient melanoma cells will continue their Darwinian battle for survival. I only hope that by the grace of our maker and highly competent medical professionals (together with some randomness and luck), I'll be able to continue my personal fight for survival and have the opportunity to continue to raise my kids, be with my wife and family, work and otherwise live life and pursue well-being.
Josh, Brian and Eva (and others, including Paul and Jamie), I've read your recent posts. I feel your anxiety and frustration. As you know, while not everyone has success stories, there are many folks that do (including those who have had success following multiple challenges). I hope that you're able to move past your present challenges as quickly (and with the least amount of difficulty) as possible and that your stories are success stories.
Lastly, I've seen a few posts asking about whether ipi-nivo can work if you've otherwise failed ipi and/or PD-1. While there is no clinical trial data on this, the answer is "yes". (I failed both individually.) I don't know if will work long-term, but I can tell you that it can work for at least 7 months. I hope to be able to report back that it will continue to work for another 1,000 days–one day at a time.
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- August 11, 2016 at 4:22 pm
Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.
I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:
Not all things that count can be counted…
DVD
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- August 11, 2016 at 4:22 pm
Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.
I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:
Not all things that count can be counted…
DVD
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- August 11, 2016 at 4:22 pm
Interesting perspective, Mat – it got me counting. We seem to be on a similar trajectory, my Stage 1 diagnosis was in 2006 and my advanced Stage 4 diagnosis was late 2013. I received my first combo (nivo/ipi) Jan. 7, 2014 – 970 days ago, responded quickly and completely, and remain NED.
I don't usually count the days, but there isn't a day that goes by that I don't think, at some point, what things would have been like if I hadn't gotten into that clinical trial. Brings to mind that old saying:
Not all things that count can be counted…
DVD
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- August 11, 2016 at 6:48 pm
Amen, Mat. So very well put. None of us here have guarantees for anything. No guarantee that the treatment we try will be successful. No guarantee that a positive response will result in a cure. But it is clear that if we focus on that incredibly sucky part of our lives – melanoma will steal that much more from us!!! I don't have all the answers and many days feel as though I have none at all. However, the wonderful folks like you on this forum give me strength and renew my spirit daily. Even through our dismay, and hurt, and fears…I know all of you are there for me and for each other.
Rev Carol Taylor, The amazing QUEEN of melanoma, Stage 3b from 2008 until September of 2015 when she became Stage IV which she still battles today, has long advocated for all of us on her blog: http://letsgivethanks.blogspot.com/ (Attitude of Gratitude) and through the Melanoma Prayer Center she developed. Click on any of her posts….and you will feel much better!!! Recently, she posted something on another site that went something like this:
Happy Thursday!!! Yep! Happy Thursday. A day we are blessed to have, to share, to live in the midst of those we hold dear. It is a day we shall never see again. Enjoy!
Told you she is the Queen! Blessings and hope to you all. And thanks to you and for you, Mat. – celeste
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- August 11, 2016 at 6:48 pm
Amen, Mat. So very well put. None of us here have guarantees for anything. No guarantee that the treatment we try will be successful. No guarantee that a positive response will result in a cure. But it is clear that if we focus on that incredibly sucky part of our lives – melanoma will steal that much more from us!!! I don't have all the answers and many days feel as though I have none at all. However, the wonderful folks like you on this forum give me strength and renew my spirit daily. Even through our dismay, and hurt, and fears…I know all of you are there for me and for each other.
Rev Carol Taylor, The amazing QUEEN of melanoma, Stage 3b from 2008 until September of 2015 when she became Stage IV which she still battles today, has long advocated for all of us on her blog: http://letsgivethanks.blogspot.com/ (Attitude of Gratitude) and through the Melanoma Prayer Center she developed. Click on any of her posts….and you will feel much better!!! Recently, she posted something on another site that went something like this:
Happy Thursday!!! Yep! Happy Thursday. A day we are blessed to have, to share, to live in the midst of those we hold dear. It is a day we shall never see again. Enjoy!
Told you she is the Queen! Blessings and hope to you all. And thanks to you and for you, Mat. – celeste
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- August 11, 2016 at 6:48 pm
Amen, Mat. So very well put. None of us here have guarantees for anything. No guarantee that the treatment we try will be successful. No guarantee that a positive response will result in a cure. But it is clear that if we focus on that incredibly sucky part of our lives – melanoma will steal that much more from us!!! I don't have all the answers and many days feel as though I have none at all. However, the wonderful folks like you on this forum give me strength and renew my spirit daily. Even through our dismay, and hurt, and fears…I know all of you are there for me and for each other.
Rev Carol Taylor, The amazing QUEEN of melanoma, Stage 3b from 2008 until September of 2015 when she became Stage IV which she still battles today, has long advocated for all of us on her blog: http://letsgivethanks.blogspot.com/ (Attitude of Gratitude) and through the Melanoma Prayer Center she developed. Click on any of her posts….and you will feel much better!!! Recently, she posted something on another site that went something like this:
Happy Thursday!!! Yep! Happy Thursday. A day we are blessed to have, to share, to live in the midst of those we hold dear. It is a day we shall never see again. Enjoy!
Told you she is the Queen! Blessings and hope to you all. And thanks to you and for you, Mat. – celeste
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- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
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- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
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- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
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- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
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- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
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- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
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- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
-
- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
-
- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
-
- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
-
- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
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- August 12, 2016 at 4:03 pm
Mat-
Great post…what a way to capture your journey and inspire so many of us. I've followed your story the whole way and it gives hope. You understand the frustration and all that comes with what we all deal with. I've read this a few times as it helped to get me reset and focus on what is important. I know I''ll have my moments but the sharing of our experiences and of what could be helps push onward!!!
I pray that you continue to win your fight; that your fight inspires many more and we stick together as a group of survivors!
Josh
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- August 12, 2016 at 6:37 pm
Awesome, Mat! Thank you so much for sharing your good news – it’s always so uplifting to hear others who are doing well after a long battle. Here’s to another 1000 days!! -
- August 12, 2016 at 6:37 pm
Awesome, Mat! Thank you so much for sharing your good news – it’s always so uplifting to hear others who are doing well after a long battle. Here’s to another 1000 days!! -
- August 12, 2016 at 6:37 pm
Awesome, Mat! Thank you so much for sharing your good news – it’s always so uplifting to hear others who are doing well after a long battle. Here’s to another 1000 days!! -
- August 14, 2016 at 7:31 pm
Thanks so much for such an inspirational post, Mat. I just had my second ipi/nivo treatment after apparently getting nothing from ipi and PD-1 and am hoping for some kind of positive response. I'll even take stability at this point. One day at a time, right?
Gwen
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- August 15, 2016 at 10:13 pm
Thanks, Josh. You hang in there. I think of you often. Glad to hear they're jumping right in to irradiate those new mets and that you're still on course for your next treatment.
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- August 15, 2016 at 10:13 pm
Thanks, Josh. You hang in there. I think of you often. Glad to hear they're jumping right in to irradiate those new mets and that you're still on course for your next treatment.
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- August 15, 2016 at 10:13 pm
Thanks, Josh. You hang in there. I think of you often. Glad to hear they're jumping right in to irradiate those new mets and that you're still on course for your next treatment.
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- August 14, 2016 at 7:31 pm
Thanks so much for such an inspirational post, Mat. I just had my second ipi/nivo treatment after apparently getting nothing from ipi and PD-1 and am hoping for some kind of positive response. I'll even take stability at this point. One day at a time, right?
Gwen
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- August 14, 2016 at 7:31 pm
Thanks so much for such an inspirational post, Mat. I just had my second ipi/nivo treatment after apparently getting nothing from ipi and PD-1 and am hoping for some kind of positive response. I'll even take stability at this point. One day at a time, right?
Gwen
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