› Forums › General Melanoma Community › Graduated to Stage IV
- This topic has 21 replies, 6 voices, and was last updated 8 years ago by
blessd4x.
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- April 24, 2016 at 3:20 pm
A couple months ago they found a tumor on my lower right lobe of my lung. Of course all my family and friends were saying it's probably nothing but I knew better. I've never had a tumor on my lung in my entire life, now being off Interferon for almost 5 months they find one. I had surgery to remove the tumor on 4/6/2016 and it wasn't pleasant to say the least. The were considering doing the needle guided biopsy then decided with my history just to be safe and cut it out. The surgeon came in the next day and said we don't have to wait for the pathology report he said it was melanoma which moved me to stage IV. I was actually ok hearing that because I already had two months to prepare since they first found the tumor. They said I did not qualify for a clinical trial right now because I had already been through Interferon, had so many surgeries and now there is no evidence of disease since they just cut it out. She said if it ever came back again I will qualify for one. My oncologist did want to start me on Keytruda though for at least one possibly two years. Her thought was that hopefully it could kill any microscopic melanoma that the scans won't pick up. The day I went in for my first Keytruda treatment (4/20) she said she would be giving my Opdivo instead. I was actually kind of happy to hear that after the little bit that I have read about both meds. I was wondering what your thoughts might be on that? Deciding to switch to Opdivo instead of the Keytruda that she originally planned on. I will say I'm a combat vet and I go to the VA so I was curious if price might have played a role? Would love to hear your thoughts. Thanks…
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- April 24, 2016 at 3:40 pm
Hi Gregg,
Sorry for what you are going through. I know of no price point difference between Opdivo and Keytruda. Both are anti-PD1 products and have basically the same efficacy and side effect profile.
I have been dealing with melanoma since 2003. Advanced to Stage IV (with brain and lung mets) in 2010…had brain treated with SRS and surg to lung. That left me NED…like you. I joined an Opdivo trial (then called MDX1106…then Nivolumab)..the NED arm….it was at that time vs an active diesease arm…in Dec of 2010…took it for 2 1/2 years (at only 1mg/kg….that was part of the trial…looking at different doses) with my last dose being in June 2013 and remain NED today.
Here is a report from the trial I was in when preliminary reports were published in 2014: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html
Here is another recent report on Nivo…in heavily pretreated patients…but without having been treated with ipi…so…much like you (though I'm not sure any were NED at the start of their trial): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/nivolumab-shows-impressive-os-in.html
Hope some of the data heartens you. I wish you my best. Celeste
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- April 24, 2016 at 3:40 pm
Hi Gregg,
Sorry for what you are going through. I know of no price point difference between Opdivo and Keytruda. Both are anti-PD1 products and have basically the same efficacy and side effect profile.
I have been dealing with melanoma since 2003. Advanced to Stage IV (with brain and lung mets) in 2010…had brain treated with SRS and surg to lung. That left me NED…like you. I joined an Opdivo trial (then called MDX1106…then Nivolumab)..the NED arm….it was at that time vs an active diesease arm…in Dec of 2010…took it for 2 1/2 years (at only 1mg/kg….that was part of the trial…looking at different doses) with my last dose being in June 2013 and remain NED today.
Here is a report from the trial I was in when preliminary reports were published in 2014: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html
Here is another recent report on Nivo…in heavily pretreated patients…but without having been treated with ipi…so…much like you (though I'm not sure any were NED at the start of their trial): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/nivolumab-shows-impressive-os-in.html
Hope some of the data heartens you. I wish you my best. Celeste
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- April 24, 2016 at 3:40 pm
Hi Gregg,
Sorry for what you are going through. I know of no price point difference between Opdivo and Keytruda. Both are anti-PD1 products and have basically the same efficacy and side effect profile.
I have been dealing with melanoma since 2003. Advanced to Stage IV (with brain and lung mets) in 2010…had brain treated with SRS and surg to lung. That left me NED…like you. I joined an Opdivo trial (then called MDX1106…then Nivolumab)..the NED arm….it was at that time vs an active diesease arm…in Dec of 2010…took it for 2 1/2 years (at only 1mg/kg….that was part of the trial…looking at different doses) with my last dose being in June 2013 and remain NED today.
Here is a report from the trial I was in when preliminary reports were published in 2014: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html
Here is another recent report on Nivo…in heavily pretreated patients…but without having been treated with ipi…so…much like you (though I'm not sure any were NED at the start of their trial): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/nivolumab-shows-impressive-os-in.html
Hope some of the data heartens you. I wish you my best. Celeste
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- April 24, 2016 at 3:50 pm
Thank you for all the information. I really appreciate it and I love hearing good news. I want to tell you that I was stationed at MacDill AFB for 9 years and I actually have a home in St. Pete. I moved back to Missouri to be close to my family during chemo. I am planning on moving back to St. Pete at the end of May. I would have been back a couple months ago had it not been for this thoracic surgery. I will be getting my treatment at Bay Pines VA in St. Pete but they already told me that if I end up starting a clinical trial that I'll be going to Moffit also.
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- April 24, 2016 at 3:50 pm
Thank you for all the information. I really appreciate it and I love hearing good news. I want to tell you that I was stationed at MacDill AFB for 9 years and I actually have a home in St. Pete. I moved back to Missouri to be close to my family during chemo. I am planning on moving back to St. Pete at the end of May. I would have been back a couple months ago had it not been for this thoracic surgery. I will be getting my treatment at Bay Pines VA in St. Pete but they already told me that if I end up starting a clinical trial that I'll be going to Moffit also.
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- April 24, 2016 at 3:50 pm
Thank you for all the information. I really appreciate it and I love hearing good news. I want to tell you that I was stationed at MacDill AFB for 9 years and I actually have a home in St. Pete. I moved back to Missouri to be close to my family during chemo. I am planning on moving back to St. Pete at the end of May. I would have been back a couple months ago had it not been for this thoracic surgery. I will be getting my treatment at Bay Pines VA in St. Pete but they already told me that if I end up starting a clinical trial that I'll be going to Moffit also.
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- April 25, 2016 at 5:58 pm
Greg,
At a stage IV there is really no need to get on a trial since Yervoy, Opdivo and Keytruda are all approved for treatment at stage IV. I guess the cost could be a concern with regard to your insurance. Are you on Tricare?
I am stage IIIB and currently in a trial of Yervoy or Opdivo. I am pretty sure I am getting the 25 treatments of Opdivo based on when I have side effects (24 hours after infusions of Opdivo).
I would start the Opdivo ASAP and it really is easy for me to handle and I am sure it will be for you too.
The only questions I think you should ask your DR is why do then not place you on the Combo treatment of Yervoy and Opdivo? This combo has the best results for stage IV if you are strong enough to get it.
Stay Strong,
Tom
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- April 25, 2016 at 5:58 pm
Greg,
At a stage IV there is really no need to get on a trial since Yervoy, Opdivo and Keytruda are all approved for treatment at stage IV. I guess the cost could be a concern with regard to your insurance. Are you on Tricare?
I am stage IIIB and currently in a trial of Yervoy or Opdivo. I am pretty sure I am getting the 25 treatments of Opdivo based on when I have side effects (24 hours after infusions of Opdivo).
I would start the Opdivo ASAP and it really is easy for me to handle and I am sure it will be for you too.
The only questions I think you should ask your DR is why do then not place you on the Combo treatment of Yervoy and Opdivo? This combo has the best results for stage IV if you are strong enough to get it.
Stay Strong,
Tom
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- April 25, 2016 at 5:58 pm
Greg,
At a stage IV there is really no need to get on a trial since Yervoy, Opdivo and Keytruda are all approved for treatment at stage IV. I guess the cost could be a concern with regard to your insurance. Are you on Tricare?
I am stage IIIB and currently in a trial of Yervoy or Opdivo. I am pretty sure I am getting the 25 treatments of Opdivo based on when I have side effects (24 hours after infusions of Opdivo).
I would start the Opdivo ASAP and it really is easy for me to handle and I am sure it will be for you too.
The only questions I think you should ask your DR is why do then not place you on the Combo treatment of Yervoy and Opdivo? This combo has the best results for stage IV if you are strong enough to get it.
Stay Strong,
Tom
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- April 25, 2016 at 6:35 pm
Hi Greg – sorry to hear about your situation, but there is a silver lining:
There are at least a few docs who think Stage IV is almost (almost!) preferable to Stage III because of the new drugs available. You're also in a category (lung mets and at present, NED) which puts you in a great position to get many benefits from the Anti-PD1/L1 drugs.
I think Opdivo and Keytruda cost the same or very close, but it's a fair point. I think that their response rates are very very close, so the differences are negligable. I'd also point out that some folks have tried both and gotten something out of it.
If I had to guess, it was just availability. My doc and I discussed Opdivo (this was when the combo was still in the midst of the study) and we went with Keytruda simply because my hospital had it on hand. I surmise that might be more of a reason you're on opdivo than anything else. Of course, it's hard to say.
Good luck – it sounds like you're in a good place and in good spirits
-Justin
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- April 25, 2016 at 6:35 pm
Hi Greg – sorry to hear about your situation, but there is a silver lining:
There are at least a few docs who think Stage IV is almost (almost!) preferable to Stage III because of the new drugs available. You're also in a category (lung mets and at present, NED) which puts you in a great position to get many benefits from the Anti-PD1/L1 drugs.
I think Opdivo and Keytruda cost the same or very close, but it's a fair point. I think that their response rates are very very close, so the differences are negligable. I'd also point out that some folks have tried both and gotten something out of it.
If I had to guess, it was just availability. My doc and I discussed Opdivo (this was when the combo was still in the midst of the study) and we went with Keytruda simply because my hospital had it on hand. I surmise that might be more of a reason you're on opdivo than anything else. Of course, it's hard to say.
Good luck – it sounds like you're in a good place and in good spirits
-Justin
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- April 25, 2016 at 6:35 pm
Hi Greg – sorry to hear about your situation, but there is a silver lining:
There are at least a few docs who think Stage IV is almost (almost!) preferable to Stage III because of the new drugs available. You're also in a category (lung mets and at present, NED) which puts you in a great position to get many benefits from the Anti-PD1/L1 drugs.
I think Opdivo and Keytruda cost the same or very close, but it's a fair point. I think that their response rates are very very close, so the differences are negligable. I'd also point out that some folks have tried both and gotten something out of it.
If I had to guess, it was just availability. My doc and I discussed Opdivo (this was when the combo was still in the midst of the study) and we went with Keytruda simply because my hospital had it on hand. I surmise that might be more of a reason you're on opdivo than anything else. Of course, it's hard to say.
Good luck – it sounds like you're in a good place and in good spirits
-Justin
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- April 25, 2016 at 7:25 pm
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- April 25, 2016 at 7:25 pm
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- April 25, 2016 at 7:30 pm
https://www.youtube.com/watch?v=aSXv02OdoO4 GreggL, when ever I have tried to post links in the past they never worked. I posted the above link as anon as a trial run and it worked so here is another one to maybe help you get an idea about talking Pd-1 (Nivo). The two videos are from Onclive and there are 6 in total by the same panel. Best of luck!!! Ed
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- April 25, 2016 at 7:30 pm
https://www.youtube.com/watch?v=aSXv02OdoO4 GreggL, when ever I have tried to post links in the past they never worked. I posted the above link as anon as a trial run and it worked so here is another one to maybe help you get an idea about talking Pd-1 (Nivo). The two videos are from Onclive and there are 6 in total by the same panel. Best of luck!!! Ed
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- April 25, 2016 at 7:30 pm
https://www.youtube.com/watch?v=aSXv02OdoO4 GreggL, when ever I have tried to post links in the past they never worked. I posted the above link as anon as a trial run and it worked so here is another one to maybe help you get an idea about talking Pd-1 (Nivo). The two videos are from Onclive and there are 6 in total by the same panel. Best of luck!!! Ed
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- April 25, 2016 at 7:25 pm
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