› Forums › General Melanoma Community › I’m sorry to break the good results trend for the Merck EAP pd1 :(
- This topic has 69 replies, 18 voices, and was last updated 9 years, 6 months ago by
RJoeyB.
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- November 5, 2014 at 3:24 am
I was hoping everything would be shrinking and the pd1/radiation combo would give a good story of how they worked great together for me. True to form today Dr. Linette my local doc gave me yet another bad report. The only good one I've ever got was in August at Mayo. But I must agree with what he is seeing, what I'm feeling and his treatment recommendations.
They weren't able to compare it to the Mayo scan in August but with their April scan.
What really suprised me is the T12 and L2 they radiated says "There is persistent intense uptake with the T12, L2 and L4 vertebral bodies." I assume that means the radiation didn't work? Radiation was completed 6 weeks ago. If that's so then I wonder about my head because all the report said was it was new because they compared to the April scan where it didn't exist yet. I was thinking about seeing if they could radiate my knee and maybe my pelvis but now I dunno. About 10 days ago my knee started hurting like crazy making it very difficult to walk. The scan shows a tumor in my knew and the growing one in my pelvis which also hurts a lot.
So overall stuff has grown although some stuff has shrank. The huge one in my shoulder still has the necrotic center but the tumor has grown and changed shape to 11.5 x 7.1 cm from 8.7 x 7.7 cm in August. Other stuff grew too.
So I dunno. I'm very depressed. He did talk about ERK or ERG trial. Whatever it's called. It's like BRAF just further down the gene chain and is phase 1. The BRAF stuff never did anything good for me (ie: never shrank nothing) so I doubt if that would work for me either. Although the taf/mek combo did keep a lot of tumors from growing just never shrank stuff. Neither did zel.
He also mentioned NIH immunotherapy (ie: TIL ACT stuff) which was already my plan B so I called the number they gave me and left a message. I dunno if I'll get in. They said it is very difficult to be accepted. With my leg acting up I just dunno. Maybe this latest dose of PD1 will make it better.
So that's my news. Since some things are still shrinking that means the PD1 is doing some good so they are keeping me on it. So I got my 9th dose today.
I'm sorry. I've always tried to be uplifting with a never quit attitude. Now I'm just very depressed and having a hard time taking all this in. I'm trying to focus on the good Rosenberg stuff. Like it's basically a 50/50 chance. 1 in 10 are cured long term. 4 in 10 have long term durable response. At least that's what I seem to recall I read. I know we've all been through so much. I just dunno if I can dig even deeper for one final treatment. Maybe I'll feel better tomorrow. It's been a rough couple days with scans yesterday and this news and stuff today. May Jesus grant me the strength and courage and whatever else I need to get into and through Dr. Rosenberg's treatment.
Artie
- Replies
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- November 5, 2014 at 3:34 am
Oh, Artie!!!
I'm so sorry. You have been such a trooper and I think of you every day!!! Plan B is Plan B and sometimes we have to go for that one. Not trying to hold out false hope, but sometimes with immunotherapy (ipi and anti-PD1) there is "pseudoprogression" before there is shrinkage. You can see what some of the big dogs are talking about here..if you feel like it… http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html
Do you think there is any chance of that? Hope you get a great call-back from your message. I'm going to be thinking about you and what might be a "Plan B.5!!!" I'll meditate on it and get back to you.
Hang in there. You have been so brave, for so long, through so much!!
Much love, c
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- November 5, 2014 at 4:17 pm
Hi Artie!
I know this is soooo frustrating and soooo hard to deal with again and again. My heart goes out to you. When you mentioned that you just did your 9th dose, I decided to add up my treatments with Pembro, and it wasn't until treatment 10 or 11 that my aggressive node finally resonded. It was so very scary during that time. But then just like that, everything fell into line and the treatment was finally working on everything, not just this piece or that piece. So I know it is tough news and I know how scary it is….but it might just need a bit more time to work.
All my best to you and I hope that this dose helps that pain go down very soon. Laurie
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- November 5, 2014 at 4:17 pm
Hi Artie!
I know this is soooo frustrating and soooo hard to deal with again and again. My heart goes out to you. When you mentioned that you just did your 9th dose, I decided to add up my treatments with Pembro, and it wasn't until treatment 10 or 11 that my aggressive node finally resonded. It was so very scary during that time. But then just like that, everything fell into line and the treatment was finally working on everything, not just this piece or that piece. So I know it is tough news and I know how scary it is….but it might just need a bit more time to work.
All my best to you and I hope that this dose helps that pain go down very soon. Laurie
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- November 5, 2014 at 4:17 pm
Hi Artie!
I know this is soooo frustrating and soooo hard to deal with again and again. My heart goes out to you. When you mentioned that you just did your 9th dose, I decided to add up my treatments with Pembro, and it wasn't until treatment 10 or 11 that my aggressive node finally resonded. It was so very scary during that time. But then just like that, everything fell into line and the treatment was finally working on everything, not just this piece or that piece. So I know it is tough news and I know how scary it is….but it might just need a bit more time to work.
All my best to you and I hope that this dose helps that pain go down very soon. Laurie
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- November 5, 2014 at 3:34 am
Oh, Artie!!!
I'm so sorry. You have been such a trooper and I think of you every day!!! Plan B is Plan B and sometimes we have to go for that one. Not trying to hold out false hope, but sometimes with immunotherapy (ipi and anti-PD1) there is "pseudoprogression" before there is shrinkage. You can see what some of the big dogs are talking about here..if you feel like it… http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html
Do you think there is any chance of that? Hope you get a great call-back from your message. I'm going to be thinking about you and what might be a "Plan B.5!!!" I'll meditate on it and get back to you.
Hang in there. You have been so brave, for so long, through so much!!
Much love, c
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- November 5, 2014 at 3:34 am
Oh, Artie!!!
I'm so sorry. You have been such a trooper and I think of you every day!!! Plan B is Plan B and sometimes we have to go for that one. Not trying to hold out false hope, but sometimes with immunotherapy (ipi and anti-PD1) there is "pseudoprogression" before there is shrinkage. You can see what some of the big dogs are talking about here..if you feel like it… http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/review-of-immunotherapy-and-durable.html
Do you think there is any chance of that? Hope you get a great call-back from your message. I'm going to be thinking about you and what might be a "Plan B.5!!!" I'll meditate on it and get back to you.
Hang in there. You have been so brave, for so long, through so much!!
Much love, c
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- November 5, 2014 at 4:34 am
Artie, I have followed your story. Giving you a virtual hug. We have all appreciated your positive outlook but everyone, including you, is allowed to feel blue in face of something so frustrating. I hope you can give yourself a break. Let us be your positive thoughts for a while. I will be praying and sending out these thoughts right now.
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- November 5, 2014 at 4:34 am
Artie, I have followed your story. Giving you a virtual hug. We have all appreciated your positive outlook but everyone, including you, is allowed to feel blue in face of something so frustrating. I hope you can give yourself a break. Let us be your positive thoughts for a while. I will be praying and sending out these thoughts right now.
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- November 5, 2014 at 4:34 am
Artie, I have followed your story. Giving you a virtual hug. We have all appreciated your positive outlook but everyone, including you, is allowed to feel blue in face of something so frustrating. I hope you can give yourself a break. Let us be your positive thoughts for a while. I will be praying and sending out these thoughts right now.
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- November 5, 2014 at 4:43 am
Artie,
Been praying for you, especially knowing you had your scan yesterday and were seeing your doctor today — know tonight that the prayers will continue. No need to apologize either; tough news for you today that many of us have heard at one point and understand.
A couple of thoughts… first, echoing Celeste about the delayed response to immunotherapies, including ipi and the anti-PD-1's, so it's good to hear that you were able to get your next dose. Second, radiation can result in a similar pattern on scans, especially PET. I've had it go both ways during the first scan following treatment, but my radiation oncologists have always warned that they prefer to wait 8-12 weeks following the last session before doing a scan. Radiation is a slow process following treatment where two things are (hopefully) happening in parallel: tumor destruction and healthy tissue repair. Both will light on PET as metabolic uptake and they've even told me that sometimes those uptake numbers even go up before going down as a result. Like I said, both have happened to me. And on the CT portion of the scan, radiation typically results in scar tissue that often shows up on scans long after (a year or longer?) completing treatment. But it certainly makes it difficult, not knowing for sure and starting to formulate plan B. Have they decided when your next scans will be?
As far as NIH, I'm glad to hear you already have the ball rolling. If you haven't already, I'd suggest enlisting the help of your doctor(s) in the referral process ASAP if you haven't already. NIH will definitely want as much as they can get as far as records, but also just having the weight of your doctor behind the request helps get things moving.
Blessings, Joe
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- November 5, 2014 at 4:43 am
Artie,
Been praying for you, especially knowing you had your scan yesterday and were seeing your doctor today — know tonight that the prayers will continue. No need to apologize either; tough news for you today that many of us have heard at one point and understand.
A couple of thoughts… first, echoing Celeste about the delayed response to immunotherapies, including ipi and the anti-PD-1's, so it's good to hear that you were able to get your next dose. Second, radiation can result in a similar pattern on scans, especially PET. I've had it go both ways during the first scan following treatment, but my radiation oncologists have always warned that they prefer to wait 8-12 weeks following the last session before doing a scan. Radiation is a slow process following treatment where two things are (hopefully) happening in parallel: tumor destruction and healthy tissue repair. Both will light on PET as metabolic uptake and they've even told me that sometimes those uptake numbers even go up before going down as a result. Like I said, both have happened to me. And on the CT portion of the scan, radiation typically results in scar tissue that often shows up on scans long after (a year or longer?) completing treatment. But it certainly makes it difficult, not knowing for sure and starting to formulate plan B. Have they decided when your next scans will be?
As far as NIH, I'm glad to hear you already have the ball rolling. If you haven't already, I'd suggest enlisting the help of your doctor(s) in the referral process ASAP if you haven't already. NIH will definitely want as much as they can get as far as records, but also just having the weight of your doctor behind the request helps get things moving.
Blessings, Joe
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- November 5, 2014 at 4:43 am
Artie,
Been praying for you, especially knowing you had your scan yesterday and were seeing your doctor today — know tonight that the prayers will continue. No need to apologize either; tough news for you today that many of us have heard at one point and understand.
A couple of thoughts… first, echoing Celeste about the delayed response to immunotherapies, including ipi and the anti-PD-1's, so it's good to hear that you were able to get your next dose. Second, radiation can result in a similar pattern on scans, especially PET. I've had it go both ways during the first scan following treatment, but my radiation oncologists have always warned that they prefer to wait 8-12 weeks following the last session before doing a scan. Radiation is a slow process following treatment where two things are (hopefully) happening in parallel: tumor destruction and healthy tissue repair. Both will light on PET as metabolic uptake and they've even told me that sometimes those uptake numbers even go up before going down as a result. Like I said, both have happened to me. And on the CT portion of the scan, radiation typically results in scar tissue that often shows up on scans long after (a year or longer?) completing treatment. But it certainly makes it difficult, not knowing for sure and starting to formulate plan B. Have they decided when your next scans will be?
As far as NIH, I'm glad to hear you already have the ball rolling. If you haven't already, I'd suggest enlisting the help of your doctor(s) in the referral process ASAP if you haven't already. NIH will definitely want as much as they can get as far as records, but also just having the weight of your doctor behind the request helps get things moving.
Blessings, Joe
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- November 5, 2014 at 6:46 am
That sucks in a very big way, Artie, and it's completely understandable that you'd be feeling discouraged and disappointed. Don't try to dig deep just yet; the need to keep fighting will come back once you've had a little time to process this. I'm not a particularly religious person and I've yet to face a battle such as yours, but I do firmly believe that God gives us amazing strength when we most need it. Plus, you have so many people here who will be praying that either the Keytruda kicks in full-force or whatever Plan B might turn out to be will be the one you've been waiting for.
A big hug,
Elaine
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- November 5, 2014 at 6:46 am
That sucks in a very big way, Artie, and it's completely understandable that you'd be feeling discouraged and disappointed. Don't try to dig deep just yet; the need to keep fighting will come back once you've had a little time to process this. I'm not a particularly religious person and I've yet to face a battle such as yours, but I do firmly believe that God gives us amazing strength when we most need it. Plus, you have so many people here who will be praying that either the Keytruda kicks in full-force or whatever Plan B might turn out to be will be the one you've been waiting for.
A big hug,
Elaine
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- November 5, 2014 at 6:46 am
That sucks in a very big way, Artie, and it's completely understandable that you'd be feeling discouraged and disappointed. Don't try to dig deep just yet; the need to keep fighting will come back once you've had a little time to process this. I'm not a particularly religious person and I've yet to face a battle such as yours, but I do firmly believe that God gives us amazing strength when we most need it. Plus, you have so many people here who will be praying that either the Keytruda kicks in full-force or whatever Plan B might turn out to be will be the one you've been waiting for.
A big hug,
Elaine
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- November 5, 2014 at 10:37 am
Hi Artie,
Im so sorry about your bad news, but im sure in the next days you will see with better perspective. I have been follow your journey and i know you have a very positive attitude. Pv10, tvec, TIL and other new treatments are still ahead, and im sure that you will find what you deserve. Dont forget that you inspire to people like me, in the begining of stage IV path. Now you have right to be deppressed, but get strength asap and battle as you only know. Big bugs and the best luck for you. Dont forget that you are not alone. Many people are fighting with you.
Jualonso
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- November 5, 2014 at 10:37 am
Hi Artie,
Im so sorry about your bad news, but im sure in the next days you will see with better perspective. I have been follow your journey and i know you have a very positive attitude. Pv10, tvec, TIL and other new treatments are still ahead, and im sure that you will find what you deserve. Dont forget that you inspire to people like me, in the begining of stage IV path. Now you have right to be deppressed, but get strength asap and battle as you only know. Big bugs and the best luck for you. Dont forget that you are not alone. Many people are fighting with you.
Jualonso
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- November 5, 2014 at 10:37 am
Hi Artie,
Im so sorry about your bad news, but im sure in the next days you will see with better perspective. I have been follow your journey and i know you have a very positive attitude. Pv10, tvec, TIL and other new treatments are still ahead, and im sure that you will find what you deserve. Dont forget that you inspire to people like me, in the begining of stage IV path. Now you have right to be deppressed, but get strength asap and battle as you only know. Big bugs and the best luck for you. Dont forget that you are not alone. Many people are fighting with you.
Jualonso
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- November 5, 2014 at 1:31 pm
Dear Artie,
I was hoping so much that your results will be good and Keytruda is kicking in. You have gone such a tough road and have a great attitude, I admire you for that. Don't be sorry for feeling down after this news. This is a lot of pressure you are carrying with you, a lot of people here know.
I want to let you know that your strength and your spirit moves my heart. You will keep figthing, I know that.
All the best, Jenny
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- November 5, 2014 at 1:31 pm
Dear Artie,
I was hoping so much that your results will be good and Keytruda is kicking in. You have gone such a tough road and have a great attitude, I admire you for that. Don't be sorry for feeling down after this news. This is a lot of pressure you are carrying with you, a lot of people here know.
I want to let you know that your strength and your spirit moves my heart. You will keep figthing, I know that.
All the best, Jenny
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- November 5, 2014 at 1:31 pm
Dear Artie,
I was hoping so much that your results will be good and Keytruda is kicking in. You have gone such a tough road and have a great attitude, I admire you for that. Don't be sorry for feeling down after this news. This is a lot of pressure you are carrying with you, a lot of people here know.
I want to let you know that your strength and your spirit moves my heart. You will keep figthing, I know that.
All the best, Jenny
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- November 5, 2014 at 2:33 pm
Shoot Artie. I echo everyone else's sentiment. You've been a hell of a fighter and an inspiration to a lot of us on this board. I sure wish you'd gotten better news. I think your plan B sounds like a great plan and I'd be doing the same thing. I never was seen at NIH but I did talk to them when I progressed to stage III and again when I progressed to stage IV. They aren't always the best at getting back with you so don't be bashful about calling multiple times. The squeaky wheel gets the oil. The couple times I communicated with them I spoke with a June Kryk at 301-451-1929.
One thing I want to add to the conversation that Joe brought up about delayed responses, and I hope I don't sound like a Debbie Downer. We all know that it is possible, especially with Ipi, to have a delayed response but this case study that was recently posted on MIF really got me thinking about your case.
http://meetinglibrary.asco.org/content/132885-144
It's a pretty small study (27 patients) but they tracked every met in all 27 patients (442 total mets) to see if they could draw any correlations. They did find some correlations between the response rates vs. the size and response rates vs. the location of the met (lungs were most responsive). But one line that stood out to me was this one: "Of 80 new or growing mets at first scan, only 4 (5%) subsequently had OR." From this albeit very small study it seems to show if the met is growing or new at first or subsequent scan it is very less likely to respond to treatment. I'm sure there's some on this board who have personal examples which contradict this study and I hesitated to share this info with you right now but I think it's important info to consider as you plan your next move.
I'll be keeping you in my prayers Artie. Don't feel bad about feeling depressed. Anyone in your situation would feel the same way. Take some time and take care of the mind and spirit and then when you're ready start taking on the body again.
Brian
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- November 5, 2014 at 2:33 pm
Shoot Artie. I echo everyone else's sentiment. You've been a hell of a fighter and an inspiration to a lot of us on this board. I sure wish you'd gotten better news. I think your plan B sounds like a great plan and I'd be doing the same thing. I never was seen at NIH but I did talk to them when I progressed to stage III and again when I progressed to stage IV. They aren't always the best at getting back with you so don't be bashful about calling multiple times. The squeaky wheel gets the oil. The couple times I communicated with them I spoke with a June Kryk at 301-451-1929.
One thing I want to add to the conversation that Joe brought up about delayed responses, and I hope I don't sound like a Debbie Downer. We all know that it is possible, especially with Ipi, to have a delayed response but this case study that was recently posted on MIF really got me thinking about your case.
http://meetinglibrary.asco.org/content/132885-144
It's a pretty small study (27 patients) but they tracked every met in all 27 patients (442 total mets) to see if they could draw any correlations. They did find some correlations between the response rates vs. the size and response rates vs. the location of the met (lungs were most responsive). But one line that stood out to me was this one: "Of 80 new or growing mets at first scan, only 4 (5%) subsequently had OR." From this albeit very small study it seems to show if the met is growing or new at first or subsequent scan it is very less likely to respond to treatment. I'm sure there's some on this board who have personal examples which contradict this study and I hesitated to share this info with you right now but I think it's important info to consider as you plan your next move.
I'll be keeping you in my prayers Artie. Don't feel bad about feeling depressed. Anyone in your situation would feel the same way. Take some time and take care of the mind and spirit and then when you're ready start taking on the body again.
Brian
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- November 5, 2014 at 4:19 pm
Yes, Brian. I posted several rather telling studies related to efficacy of MK3475 (Pembro/Keytruda) including the one you note in June. Here they are for those of you that are interested:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html
Just as we saw when ipi was approved…as more folks take the anti-PD1 drugs…the more we will learn about their side effects and their efficacy…for good and ill. The questions of effect, how to measure it, how durable it will be, determining on the front end who can reap positive benefits, how to handle side effects, and what combo's can make the anti-PD1 drugs even more effective for more people NEED to be answered.
So...Artie...Been thinking and thinking. First of all….see what your doctor and the NIH folks have to say. They know ever so much more than I do!! I think the combo of Nivolumab and lirilumab (anti-KIR) is very interesting, but I'm pretty sure having already had an anti-PD1 product will be an exclusion.
But…here's the first thing that came to my mind (after whatever you..first and foremost…and NIH folks, etc think!!!!) that might be helpful….LAG-3 trials.
This trial offers LAG-3 with or without anti-PD1. Cohorts are specifically for: "subjects progressing while on- or after- receiving anti-PD1 or anti-PDL1" drugs!!! It is recruiting and located in Chicago, Baltimore, Boston, NY, and Portland. I'm sure your docs could get you a great deal more info if you wanted them to.
Here's a post with information about LAG-3 and how it could make anti-PD1 more effective that I put up in June… http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/how-to-make-anti-pd1-work-better-with.html
Don't know if any of that helps or interests you. Hang in there. In the words of my sister….poet laureate of all things melanoma: Melanoma sucks great big green hairy wizard balls!!! BIG TIME!!!
Much love and hugs, Celeste
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- November 5, 2014 at 4:19 pm
Yes, Brian. I posted several rather telling studies related to efficacy of MK3475 (Pembro/Keytruda) including the one you note in June. Here they are for those of you that are interested:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html
Just as we saw when ipi was approved…as more folks take the anti-PD1 drugs…the more we will learn about their side effects and their efficacy…for good and ill. The questions of effect, how to measure it, how durable it will be, determining on the front end who can reap positive benefits, how to handle side effects, and what combo's can make the anti-PD1 drugs even more effective for more people NEED to be answered.
So...Artie...Been thinking and thinking. First of all….see what your doctor and the NIH folks have to say. They know ever so much more than I do!! I think the combo of Nivolumab and lirilumab (anti-KIR) is very interesting, but I'm pretty sure having already had an anti-PD1 product will be an exclusion.
But…here's the first thing that came to my mind (after whatever you..first and foremost…and NIH folks, etc think!!!!) that might be helpful….LAG-3 trials.
This trial offers LAG-3 with or without anti-PD1. Cohorts are specifically for: "subjects progressing while on- or after- receiving anti-PD1 or anti-PDL1" drugs!!! It is recruiting and located in Chicago, Baltimore, Boston, NY, and Portland. I'm sure your docs could get you a great deal more info if you wanted them to.
Here's a post with information about LAG-3 and how it could make anti-PD1 more effective that I put up in June… http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/how-to-make-anti-pd1-work-better-with.html
Don't know if any of that helps or interests you. Hang in there. In the words of my sister….poet laureate of all things melanoma: Melanoma sucks great big green hairy wizard balls!!! BIG TIME!!!
Much love and hugs, Celeste
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- November 5, 2014 at 4:19 pm
Yes, Brian. I posted several rather telling studies related to efficacy of MK3475 (Pembro/Keytruda) including the one you note in June. Here they are for those of you that are interested:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html
Just as we saw when ipi was approved…as more folks take the anti-PD1 drugs…the more we will learn about their side effects and their efficacy…for good and ill. The questions of effect, how to measure it, how durable it will be, determining on the front end who can reap positive benefits, how to handle side effects, and what combo's can make the anti-PD1 drugs even more effective for more people NEED to be answered.
So...Artie...Been thinking and thinking. First of all….see what your doctor and the NIH folks have to say. They know ever so much more than I do!! I think the combo of Nivolumab and lirilumab (anti-KIR) is very interesting, but I'm pretty sure having already had an anti-PD1 product will be an exclusion.
But…here's the first thing that came to my mind (after whatever you..first and foremost…and NIH folks, etc think!!!!) that might be helpful….LAG-3 trials.
This trial offers LAG-3 with or without anti-PD1. Cohorts are specifically for: "subjects progressing while on- or after- receiving anti-PD1 or anti-PDL1" drugs!!! It is recruiting and located in Chicago, Baltimore, Boston, NY, and Portland. I'm sure your docs could get you a great deal more info if you wanted them to.
Here's a post with information about LAG-3 and how it could make anti-PD1 more effective that I put up in June… http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/how-to-make-anti-pd1-work-better-with.html
Don't know if any of that helps or interests you. Hang in there. In the words of my sister….poet laureate of all things melanoma: Melanoma sucks great big green hairy wizard balls!!! BIG TIME!!!
Much love and hugs, Celeste
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- November 5, 2014 at 2:33 pm
Shoot Artie. I echo everyone else's sentiment. You've been a hell of a fighter and an inspiration to a lot of us on this board. I sure wish you'd gotten better news. I think your plan B sounds like a great plan and I'd be doing the same thing. I never was seen at NIH but I did talk to them when I progressed to stage III and again when I progressed to stage IV. They aren't always the best at getting back with you so don't be bashful about calling multiple times. The squeaky wheel gets the oil. The couple times I communicated with them I spoke with a June Kryk at 301-451-1929.
One thing I want to add to the conversation that Joe brought up about delayed responses, and I hope I don't sound like a Debbie Downer. We all know that it is possible, especially with Ipi, to have a delayed response but this case study that was recently posted on MIF really got me thinking about your case.
http://meetinglibrary.asco.org/content/132885-144
It's a pretty small study (27 patients) but they tracked every met in all 27 patients (442 total mets) to see if they could draw any correlations. They did find some correlations between the response rates vs. the size and response rates vs. the location of the met (lungs were most responsive). But one line that stood out to me was this one: "Of 80 new or growing mets at first scan, only 4 (5%) subsequently had OR." From this albeit very small study it seems to show if the met is growing or new at first or subsequent scan it is very less likely to respond to treatment. I'm sure there's some on this board who have personal examples which contradict this study and I hesitated to share this info with you right now but I think it's important info to consider as you plan your next move.
I'll be keeping you in my prayers Artie. Don't feel bad about feeling depressed. Anyone in your situation would feel the same way. Take some time and take care of the mind and spirit and then when you're ready start taking on the body again.
Brian
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- November 5, 2014 at 2:59 pm
Artie, I am sorry you didn't get the results you'd hoped for. Know that you are in my prayers for a most successful "Plan B."
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- November 5, 2014 at 4:51 pm
It is OK to feel depressed and what a normal response to discouraging news!! You can feel as depressed as you feel like and continue working towards your treatment. It is good to have a plan B and I hope you are accepted is that is the best option for you.
What a tough journey!
My best wishes
M
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- November 5, 2014 at 4:51 pm
It is OK to feel depressed and what a normal response to discouraging news!! You can feel as depressed as you feel like and continue working towards your treatment. It is good to have a plan B and I hope you are accepted is that is the best option for you.
What a tough journey!
My best wishes
M
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- November 5, 2014 at 4:51 pm
It is OK to feel depressed and what a normal response to discouraging news!! You can feel as depressed as you feel like and continue working towards your treatment. It is good to have a plan B and I hope you are accepted is that is the best option for you.
What a tough journey!
My best wishes
M
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- November 5, 2014 at 6:54 pm
Hi Artie, I just wanted to say never say sorry for sharing how you are feeling. I Put on the brave face, for people in my life every day. My wife wonders why I go and visit this forum so often? It is because I feel safe knowing that others here understand what stage 4 melanoma feels like. So brother anytime you need to reach out, know that your Melanoma family will be there for you! Here is a big hug from Canada! Ed
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- November 5, 2014 at 6:54 pm
Hi Artie, I just wanted to say never say sorry for sharing how you are feeling. I Put on the brave face, for people in my life every day. My wife wonders why I go and visit this forum so often? It is because I feel safe knowing that others here understand what stage 4 melanoma feels like. So brother anytime you need to reach out, know that your Melanoma family will be there for you! Here is a big hug from Canada! Ed
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- November 5, 2014 at 6:54 pm
Hi Artie, I just wanted to say never say sorry for sharing how you are feeling. I Put on the brave face, for people in my life every day. My wife wonders why I go and visit this forum so often? It is because I feel safe knowing that others here understand what stage 4 melanoma feels like. So brother anytime you need to reach out, know that your Melanoma family will be there for you! Here is a big hug from Canada! Ed
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- November 5, 2014 at 8:17 pm
Artie: I, too, have been following your story and send a big hug today. Give yourself a gentle break after this news and know that so many here are in your corner. Thinking of you!
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- November 5, 2014 at 11:52 pm
Hi Artie… If your oncologist contacted NIH, that would be helpful. Dr. Lipson emailed them for me. I didn't qualify for the TIL but was able to participate in the MAGE TCR trial. It didn't work, but it may have combined well with Keytruda.
We're all one big shoulder to lean on. Depression, anxiety, disappointment….I struggle all the time. I'll keep you in my prayers.
Sending you a hug….Terrie
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- November 5, 2014 at 11:52 pm
Hi Artie… If your oncologist contacted NIH, that would be helpful. Dr. Lipson emailed them for me. I didn't qualify for the TIL but was able to participate in the MAGE TCR trial. It didn't work, but it may have combined well with Keytruda.
We're all one big shoulder to lean on. Depression, anxiety, disappointment….I struggle all the time. I'll keep you in my prayers.
Sending you a hug….Terrie
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- November 5, 2014 at 11:52 pm
Hi Artie… If your oncologist contacted NIH, that would be helpful. Dr. Lipson emailed them for me. I didn't qualify for the TIL but was able to participate in the MAGE TCR trial. It didn't work, but it may have combined well with Keytruda.
We're all one big shoulder to lean on. Depression, anxiety, disappointment….I struggle all the time. I'll keep you in my prayers.
Sending you a hug….Terrie
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- November 6, 2014 at 1:19 am
For Artie….perhaps the most beautiful song I have ever heard…https://www.youtube.com/watch?v=wcAJ73pu2_M
Love, c
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- November 6, 2014 at 1:19 am
For Artie….perhaps the most beautiful song I have ever heard…https://www.youtube.com/watch?v=wcAJ73pu2_M
Love, c
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- November 6, 2014 at 1:19 am
For Artie….perhaps the most beautiful song I have ever heard…https://www.youtube.com/watch?v=wcAJ73pu2_M
Love, c
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- November 6, 2014 at 2:23 am
Artie,
i am am thinking about you and hoping for a good plan B. I like idea of contacting NIH.
Angela
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- November 6, 2014 at 2:23 am
Artie,
i am am thinking about you and hoping for a good plan B. I like idea of contacting NIH.
Angela
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- November 6, 2014 at 2:23 am
Artie,
i am am thinking about you and hoping for a good plan B. I like idea of contacting NIH.
Angela
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- November 6, 2014 at 4:03 am
Artie – I'm always excited when I see that you've posted something. "It's a new post from Artie". You have given me such inspiration. It is because of your posts that I became aware of two things that have really helped me (here's me attempting to paraphrase you):
– Every treatment doesn't work for every person so keep going until you find that one treatment that works for YOU.
– Always have a plan B lined up and ready to go if/when your current treatment is no longer working
I have taken both of the above pieces of wisdom to heart and have mapped out a sequence of treatments for myself (always subject to change based on new research and/or progress of my disease).
I am so sorry that you haven't yet found your one treatment. Although, perhaps you will be like Laurie and it will kick in on the 10th or 11th treatment?
In the meantime, if you're open to something more alternative, see if you can find a spa or wellness center near you that has a Photon Genius. These machines are supposed to work wonders with cancer-related pain. It's basically a super-high-tech sauna. They are highly recommended by CancerTutor especially for melanoma sufferers. I just tried one yesterday for the first time and felt quite peppy afterwards (too soon to say if it did anything else). I would just like to see you at least free from the pain while you work your Plan B.
Best of luck to you, Artie,
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- November 6, 2014 at 4:03 am
Artie – I'm always excited when I see that you've posted something. "It's a new post from Artie". You have given me such inspiration. It is because of your posts that I became aware of two things that have really helped me (here's me attempting to paraphrase you):
– Every treatment doesn't work for every person so keep going until you find that one treatment that works for YOU.
– Always have a plan B lined up and ready to go if/when your current treatment is no longer working
I have taken both of the above pieces of wisdom to heart and have mapped out a sequence of treatments for myself (always subject to change based on new research and/or progress of my disease).
I am so sorry that you haven't yet found your one treatment. Although, perhaps you will be like Laurie and it will kick in on the 10th or 11th treatment?
In the meantime, if you're open to something more alternative, see if you can find a spa or wellness center near you that has a Photon Genius. These machines are supposed to work wonders with cancer-related pain. It's basically a super-high-tech sauna. They are highly recommended by CancerTutor especially for melanoma sufferers. I just tried one yesterday for the first time and felt quite peppy afterwards (too soon to say if it did anything else). I would just like to see you at least free from the pain while you work your Plan B.
Best of luck to you, Artie,
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- November 6, 2014 at 4:03 am
Artie – I'm always excited when I see that you've posted something. "It's a new post from Artie". You have given me such inspiration. It is because of your posts that I became aware of two things that have really helped me (here's me attempting to paraphrase you):
– Every treatment doesn't work for every person so keep going until you find that one treatment that works for YOU.
– Always have a plan B lined up and ready to go if/when your current treatment is no longer working
I have taken both of the above pieces of wisdom to heart and have mapped out a sequence of treatments for myself (always subject to change based on new research and/or progress of my disease).
I am so sorry that you haven't yet found your one treatment. Although, perhaps you will be like Laurie and it will kick in on the 10th or 11th treatment?
In the meantime, if you're open to something more alternative, see if you can find a spa or wellness center near you that has a Photon Genius. These machines are supposed to work wonders with cancer-related pain. It's basically a super-high-tech sauna. They are highly recommended by CancerTutor especially for melanoma sufferers. I just tried one yesterday for the first time and felt quite peppy afterwards (too soon to say if it did anything else). I would just like to see you at least free from the pain while you work your Plan B.
Best of luck to you, Artie,
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- November 6, 2014 at 12:37 pm
Artie,
you are so courageous and have been through so much. i can understand you may be feeling depressed now. I am sure you will bounce back, take your time, you deserve a break.
know that i am thinking of you and keeping you in my prayers. May plan B be your silver bullet!
susannah
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- November 6, 2014 at 12:37 pm
Artie,
you are so courageous and have been through so much. i can understand you may be feeling depressed now. I am sure you will bounce back, take your time, you deserve a break.
know that i am thinking of you and keeping you in my prayers. May plan B be your silver bullet!
susannah
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- November 6, 2014 at 12:37 pm
Artie,
you are so courageous and have been through so much. i can understand you may be feeling depressed now. I am sure you will bounce back, take your time, you deserve a break.
know that i am thinking of you and keeping you in my prayers. May plan B be your silver bullet!
susannah
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- November 6, 2014 at 9:54 pm
Wow. Thank you everyone. I sent the form they emailed me yesterday to NIH/NCI last night and they already called me today. They will be getting all the stuff they need from my doc. Well his nurse actually. He also has another one of his patients doing the same thing and the NIH nurse recognized my doc's name because of that. I was suprised she wasn't more concerned about my left knee problem. I thought that would be a show stopper right away but she just jotted it and some other stuff down in her notes. I imagine it will come up again later. Hopefully by then I'll be better again. I can't walk too good anymore and my doc thinks it is because of the tumor in my knee. So instead of trying to walk a mile all at once I walk a minute or so then rest it until the pain goes away then walk another minute until I get a mile in except I haven't built up to that far yet. Not ideal but I gotta do what I gotta do.
I remember trying to get into anti-lag in chicago last spring but over the phone the guy was like his list of people was way more than the slots they had. Maybe by the time I'm done with til they will expand it so I can get into it plus pd1 rather than just pd1. Assuming of course after til I still need any treatment. lol Also they have other stuff besides til so they apparently study a sample of my tumor to decide which trial would be best for me. Dunno if more pd1 will get these stubborn tumors in line but I doubt it. My ldh keeps going up too. In just 3 weeks went from 500 something to 600 something. My doc thinks most of that is because of the huge tumor in my shoulder. He's hoping the NIH folks will remove most of that tumor but I dunno if they will or not. I already mentioned that when they called.
Good to hear the radiation may be working after all. That really had me worried. With NIH maybe coming up who knows about schedules but right now my radiation doc plans to do a head mri on dec 15. That's about exactly 12 weeks after last treatment. He didn't think we needed a lower spine mri. I think for keytruda patients here they do the pet/ct every 9 weeks but I may be wrong.
Sorry I'm just responding in one post rather than to everyone indivually. I really appreciate all your support. Ever since I got the Keytruda Tuesday I've been having fevers and mild shivers. Nothing new for me except this time instead of the fever never getting above 101 the fever got up to 102.9 before the tylenol finally started knocking it back down. I was finally at normal temp for a couple hours and now it's back up to 99.5. Guess I better try to rest some more.
Artie
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- November 6, 2014 at 9:54 pm
Wow. Thank you everyone. I sent the form they emailed me yesterday to NIH/NCI last night and they already called me today. They will be getting all the stuff they need from my doc. Well his nurse actually. He also has another one of his patients doing the same thing and the NIH nurse recognized my doc's name because of that. I was suprised she wasn't more concerned about my left knee problem. I thought that would be a show stopper right away but she just jotted it and some other stuff down in her notes. I imagine it will come up again later. Hopefully by then I'll be better again. I can't walk too good anymore and my doc thinks it is because of the tumor in my knee. So instead of trying to walk a mile all at once I walk a minute or so then rest it until the pain goes away then walk another minute until I get a mile in except I haven't built up to that far yet. Not ideal but I gotta do what I gotta do.
I remember trying to get into anti-lag in chicago last spring but over the phone the guy was like his list of people was way more than the slots they had. Maybe by the time I'm done with til they will expand it so I can get into it plus pd1 rather than just pd1. Assuming of course after til I still need any treatment. lol Also they have other stuff besides til so they apparently study a sample of my tumor to decide which trial would be best for me. Dunno if more pd1 will get these stubborn tumors in line but I doubt it. My ldh keeps going up too. In just 3 weeks went from 500 something to 600 something. My doc thinks most of that is because of the huge tumor in my shoulder. He's hoping the NIH folks will remove most of that tumor but I dunno if they will or not. I already mentioned that when they called.
Good to hear the radiation may be working after all. That really had me worried. With NIH maybe coming up who knows about schedules but right now my radiation doc plans to do a head mri on dec 15. That's about exactly 12 weeks after last treatment. He didn't think we needed a lower spine mri. I think for keytruda patients here they do the pet/ct every 9 weeks but I may be wrong.
Sorry I'm just responding in one post rather than to everyone indivually. I really appreciate all your support. Ever since I got the Keytruda Tuesday I've been having fevers and mild shivers. Nothing new for me except this time instead of the fever never getting above 101 the fever got up to 102.9 before the tylenol finally started knocking it back down. I was finally at normal temp for a couple hours and now it's back up to 99.5. Guess I better try to rest some more.
Artie
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- November 6, 2014 at 9:54 pm
Wow. Thank you everyone. I sent the form they emailed me yesterday to NIH/NCI last night and they already called me today. They will be getting all the stuff they need from my doc. Well his nurse actually. He also has another one of his patients doing the same thing and the NIH nurse recognized my doc's name because of that. I was suprised she wasn't more concerned about my left knee problem. I thought that would be a show stopper right away but she just jotted it and some other stuff down in her notes. I imagine it will come up again later. Hopefully by then I'll be better again. I can't walk too good anymore and my doc thinks it is because of the tumor in my knee. So instead of trying to walk a mile all at once I walk a minute or so then rest it until the pain goes away then walk another minute until I get a mile in except I haven't built up to that far yet. Not ideal but I gotta do what I gotta do.
I remember trying to get into anti-lag in chicago last spring but over the phone the guy was like his list of people was way more than the slots they had. Maybe by the time I'm done with til they will expand it so I can get into it plus pd1 rather than just pd1. Assuming of course after til I still need any treatment. lol Also they have other stuff besides til so they apparently study a sample of my tumor to decide which trial would be best for me. Dunno if more pd1 will get these stubborn tumors in line but I doubt it. My ldh keeps going up too. In just 3 weeks went from 500 something to 600 something. My doc thinks most of that is because of the huge tumor in my shoulder. He's hoping the NIH folks will remove most of that tumor but I dunno if they will or not. I already mentioned that when they called.
Good to hear the radiation may be working after all. That really had me worried. With NIH maybe coming up who knows about schedules but right now my radiation doc plans to do a head mri on dec 15. That's about exactly 12 weeks after last treatment. He didn't think we needed a lower spine mri. I think for keytruda patients here they do the pet/ct every 9 weeks but I may be wrong.
Sorry I'm just responding in one post rather than to everyone indivually. I really appreciate all your support. Ever since I got the Keytruda Tuesday I've been having fevers and mild shivers. Nothing new for me except this time instead of the fever never getting above 101 the fever got up to 102.9 before the tylenol finally started knocking it back down. I was finally at normal temp for a couple hours and now it's back up to 99.5. Guess I better try to rest some more.
Artie
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- November 7, 2014 at 4:21 pm
Good to hear that information is flowing both ways with NIH and that your doctor (and/or staff) is actively engaged in assisting. As things move along, please don't hesitate to reach out to me if you have any questions about the process. They like their tagline, "NIH, there's no other hospital like it," and I found that to be true — not necessarily good or bad, it's just different. Part of it is certainly because it's only clinical trials and research, no standard-of-care treatment, part of it is because it's government run (and run well, I think, given the government's reputation at running anything), but again, it's different than anywhere else I've been. It's been three years since the last time I stepped foot on the campus in Bethesda, but 'm familiar with how things work, at least within the immunotherapy area.
In the meantime, you remain in my prayers,
Joe
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- November 7, 2014 at 4:21 pm
Good to hear that information is flowing both ways with NIH and that your doctor (and/or staff) is actively engaged in assisting. As things move along, please don't hesitate to reach out to me if you have any questions about the process. They like their tagline, "NIH, there's no other hospital like it," and I found that to be true — not necessarily good or bad, it's just different. Part of it is certainly because it's only clinical trials and research, no standard-of-care treatment, part of it is because it's government run (and run well, I think, given the government's reputation at running anything), but again, it's different than anywhere else I've been. It's been three years since the last time I stepped foot on the campus in Bethesda, but 'm familiar with how things work, at least within the immunotherapy area.
In the meantime, you remain in my prayers,
Joe
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- November 7, 2014 at 4:21 pm
Good to hear that information is flowing both ways with NIH and that your doctor (and/or staff) is actively engaged in assisting. As things move along, please don't hesitate to reach out to me if you have any questions about the process. They like their tagline, "NIH, there's no other hospital like it," and I found that to be true — not necessarily good or bad, it's just different. Part of it is certainly because it's only clinical trials and research, no standard-of-care treatment, part of it is because it's government run (and run well, I think, given the government's reputation at running anything), but again, it's different than anywhere else I've been. It's been three years since the last time I stepped foot on the campus in Bethesda, but 'm familiar with how things work, at least within the immunotherapy area.
In the meantime, you remain in my prayers,
Joe
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