› Forums › General Melanoma Community › 3c adjuvant nivo/ipi…need some help first post.
- This topic has 51 replies, 5 voices, and was last updated 10 years, 8 months ago by
273c.
- Post
-
- July 1, 2015 at 10:46 pm
First of all i want to thank everyone for responding and thank the users who regularly post here. My name is Jamie I’m 36 year old male with 3 young kids. I have been reading this site for 2 months. Here goes, Diagnosed late April…lymphendectomy on left groin mid may, pathology came back with lymph node involvement in 5/13 nodes. Two weeks after surgery i had a in transit legion show up right by area where mole was. Had in transit spot resected. June 17th had ct scan that showed enlarged iliac node…positive biopsy so back to surgery i went. Surgeon removed 5 deep iliac nodes 3 were positive. Still 3c as it is still regional nodes. I am aware of all the numbers and stats for my situation as i feel I’ve done as much research as i could have since I’ve been diagnosed. I have ruled out interferon as we know the the odds of it working. I’ve narrowed things down to a vaccine trial at uw madison that i admittedly dont know much about other than its a cdx 1401 a cdx301 and the ny-eso-1. Or a trial of ipi/nivo in adjuvant setting. What i am asking for thoughts on is advice on the ipi/nivo as adjuvant. what statistically might be better? There are some results on ipi in adjuvant setting but not much on nivo. The kick in the ass is my local doctor has applied to my insurance company for ipi as adjuvant and they have verbally agreed to pay for it as 3c even though it is not fda approved. He presented trial data of the 951 patient trial of ipi as adjuvant. So my dilemma is if the 50/50 shot of nivo might be worth it. If i join the trial i have a 50% chance of getting ipi in the trial and would have to drive 3.5 hrs to get it when my local doc is 15 min away. I also am not 100% sure of implications for future use of nivo/ipi if i progress to stage4 but feel i need to take the biggest swing i can at this before it becomes metastatic to other parts of my body…if its not to late. Also just want to thank the knowledgeable posters here again and hope you realize how much you are helping people even though not everyone that has been recently diagnosed starts a post. The last 3 months i cant even explain the fear that has envolped me. The thought of leaving my kids has been almost to much for my mind to bear. The uncertainty of the future hurts but i know i will do everything in my power so that doesn’t happen. It is such a powerless feeling to go from a fit hard working blue coller guy that never had a thought of dieing young. To staring death in the eye. Any questions for me i will answer quickly.Thanks again Jamie
- Replies
-
-
- July 1, 2015 at 11:53 pm
Jamie,
You are doing great. The ipi/nivo combo has the best stats going! Period. Most side effects too, but….
There is actually a ton of info on nivo…esp for NED folks. Trust me. I am a stage IV rattie from a nivo trial that started in 2010. Stage IV mind you. Mets in lung, brain, tonsil. Albeit removed with SRS and surgery. Started nivo in 2010. Did it for 2 1/2 years. Still NED. Anti-PD1 alone has a 30-40% response rate in patients with measurable disease. Hard to say for us NED folks. However, we have learned that the lower the disease burden, the better the response. But…here's the results of my trial: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html Keep in mind…you are better off than we were. You are not Stage IV!! On the up side for us…we were a Phase I trial. Granted, we didn't know if we were going to turn purple and grow three heads…but we all got the medicine. In Phase II and III trials…they compare the results to lesser drugs or placebo.
Here is some info on the ipi vs nivo as adjuvant: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
As far as the ipi/nivo combo for NED and measurable disease peeps, this data out of ASCO 2014 really breaks it down: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/nivoipi-combo-nivo-vs-pembro-pd-l1.html
Hope this helps. No one can make the decisions you have to make but you. However, if I were you…your age, with your kids…I would go for the ipi/nivo combo. Just say'n. I wish you well. celeste
PS You're still fit. You're still you. And…we are all staring death in the eye. Nobody gets out of this alive. But…I'd hang on for as long as I could. That's my plan! c
-
- July 1, 2015 at 11:53 pm
Jamie,
You are doing great. The ipi/nivo combo has the best stats going! Period. Most side effects too, but….
There is actually a ton of info on nivo…esp for NED folks. Trust me. I am a stage IV rattie from a nivo trial that started in 2010. Stage IV mind you. Mets in lung, brain, tonsil. Albeit removed with SRS and surgery. Started nivo in 2010. Did it for 2 1/2 years. Still NED. Anti-PD1 alone has a 30-40% response rate in patients with measurable disease. Hard to say for us NED folks. However, we have learned that the lower the disease burden, the better the response. But…here's the results of my trial: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html Keep in mind…you are better off than we were. You are not Stage IV!! On the up side for us…we were a Phase I trial. Granted, we didn't know if we were going to turn purple and grow three heads…but we all got the medicine. In Phase II and III trials…they compare the results to lesser drugs or placebo.
Here is some info on the ipi vs nivo as adjuvant: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
As far as the ipi/nivo combo for NED and measurable disease peeps, this data out of ASCO 2014 really breaks it down: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/nivoipi-combo-nivo-vs-pembro-pd-l1.html
Hope this helps. No one can make the decisions you have to make but you. However, if I were you…your age, with your kids…I would go for the ipi/nivo combo. Just say'n. I wish you well. celeste
PS You're still fit. You're still you. And…we are all staring death in the eye. Nobody gets out of this alive. But…I'd hang on for as long as I could. That's my plan! c
-
- July 2, 2015 at 12:32 am
Sorry if i double post here. Thank you for the response Celeste as i have a bunch of respect for your knowledge. So the trial I’m looking to get on is either nivo or ipi not a combination. So my problem i need to figure put is if the coin flip chance of getting nivo is worth it. I will have a 50% chance of getting ipi and having to drive 3.5 hours to get it when my local doctor 15 min away can also get it. Im not aware of any nivo/ipi combo trials for 3c resected but of anyone knows of one p
out there I would definitely look into it. -
- July 2, 2015 at 12:32 am
Sorry if i double post here. Thank you for the response Celeste as i have a bunch of respect for your knowledge. So the trial I’m looking to get on is either nivo or ipi not a combination. So my problem i need to figure put is if the coin flip chance of getting nivo is worth it. I will have a 50% chance of getting ipi and having to drive 3.5 hours to get it when my local doctor 15 min away can also get it. Im not aware of any nivo/ipi combo trials for 3c resected but of anyone knows of one p
out there I would definitely look into it. -
- July 2, 2015 at 1:40 am
A Phase I Trial of a Vaccine Combining Multiple Class I Peptides and Montanide ISA 51VG With Escalating Doses of Anti-PD-1 Antibody Nivolumab or Ipilimumab With Nivolumab For Patients With Resected Stages IIIC/ IV Melanoma
Only peptide and montanide vaccines are no longer required. Still recruiting.
ClinicalTrials.gov Identifier: NCT01176474c -
- July 2, 2015 at 1:40 am
A Phase I Trial of a Vaccine Combining Multiple Class I Peptides and Montanide ISA 51VG With Escalating Doses of Anti-PD-1 Antibody Nivolumab or Ipilimumab With Nivolumab For Patients With Resected Stages IIIC/ IV Melanoma
Only peptide and montanide vaccines are no longer required. Still recruiting.
ClinicalTrials.gov Identifier: NCT01176474c -
- July 2, 2015 at 1:40 am
A Phase I Trial of a Vaccine Combining Multiple Class I Peptides and Montanide ISA 51VG With Escalating Doses of Anti-PD-1 Antibody Nivolumab or Ipilimumab With Nivolumab For Patients With Resected Stages IIIC/ IV Melanoma
Only peptide and montanide vaccines are no longer required. Still recruiting.
ClinicalTrials.gov Identifier: NCT01176474c -
- July 2, 2015 at 2:05 am
I actually did call moffit and leave a message about that trial but never got a return phone call. Thinking back I basically dismissed that trial because it started in 2010 and thought it probably had not been taken down from clinical.gov. Is this the trial you were involved in? Logistics would definitely be hard (from WI) but i think i could find a way to make anything work if it showed that much promise. I will check with moffit…Thanks again.Jamie
-
- July 2, 2015 at 2:05 am
I actually did call moffit and leave a message about that trial but never got a return phone call. Thinking back I basically dismissed that trial because it started in 2010 and thought it probably had not been taken down from clinical.gov. Is this the trial you were involved in? Logistics would definitely be hard (from WI) but i think i could find a way to make anything work if it showed that much promise. I will check with moffit…Thanks again.Jamie
-
- July 2, 2015 at 2:05 am
I actually did call moffit and leave a message about that trial but never got a return phone call. Thinking back I basically dismissed that trial because it started in 2010 and thought it probably had not been taken down from clinical.gov. Is this the trial you were involved in? Logistics would definitely be hard (from WI) but i think i could find a way to make anything work if it showed that much promise. I will check with moffit…Thanks again.Jamie
-
- July 2, 2015 at 2:05 am
And…if what you are saying is that you have a chance of taking ipi only…vs a 50/50 chance of getting ipi or nivo….well…ipi has a 15% repsonse rate in melanoma patients with measurable disease and nivo has a 30-40% response rate. It's all a crap shoot. Do what you think is best for you. c
-
- July 2, 2015 at 2:05 am
And…if what you are saying is that you have a chance of taking ipi only…vs a 50/50 chance of getting ipi or nivo….well…ipi has a 15% repsonse rate in melanoma patients with measurable disease and nivo has a 30-40% response rate. It's all a crap shoot. Do what you think is best for you. c
-
- July 2, 2015 at 2:05 am
And…if what you are saying is that you have a chance of taking ipi only…vs a 50/50 chance of getting ipi or nivo….well…ipi has a 15% repsonse rate in melanoma patients with measurable disease and nivo has a 30-40% response rate. It's all a crap shoot. Do what you think is best for you. c
-
- July 2, 2015 at 2:11 am
Yes, that is the trial I am in. However, it was only nivo and vaccine (the vaccines did nothing…they are not given any more) for one arm of NED patients and one arm of patients with disease when I entered their first cohort in 2010. It is still going strong and has a zillion more arms now. I live in TN and did it. I know a current patient living in Texas in the ipi/nivo NED combo arm now. Call again if you are interested. Dr. Weber will always take your calls. Or…try to reach his nurse Jennifer. They are awesome. It is a rather horrible committment. But, I think it is the only reason I am still here. Keeping in mind….I had only Nivo. The ipi/nivo combo did not exist when I needed it. I wish you my best. c
-
- July 2, 2015 at 2:11 am
Yes, that is the trial I am in. However, it was only nivo and vaccine (the vaccines did nothing…they are not given any more) for one arm of NED patients and one arm of patients with disease when I entered their first cohort in 2010. It is still going strong and has a zillion more arms now. I live in TN and did it. I know a current patient living in Texas in the ipi/nivo NED combo arm now. Call again if you are interested. Dr. Weber will always take your calls. Or…try to reach his nurse Jennifer. They are awesome. It is a rather horrible committment. But, I think it is the only reason I am still here. Keeping in mind….I had only Nivo. The ipi/nivo combo did not exist when I needed it. I wish you my best. c
-
- July 2, 2015 at 2:11 am
Yes, that is the trial I am in. However, it was only nivo and vaccine (the vaccines did nothing…they are not given any more) for one arm of NED patients and one arm of patients with disease when I entered their first cohort in 2010. It is still going strong and has a zillion more arms now. I live in TN and did it. I know a current patient living in Texas in the ipi/nivo NED combo arm now. Call again if you are interested. Dr. Weber will always take your calls. Or…try to reach his nurse Jennifer. They are awesome. It is a rather horrible committment. But, I think it is the only reason I am still here. Keeping in mind….I had only Nivo. The ipi/nivo combo did not exist when I needed it. I wish you my best. c
-
- July 2, 2015 at 2:47 am
Hi Jaimie,
I too am from WI (Appleton) and am stage 3C. I was diagnosed in 2009-long story. Interferon failed me, Leukine injections failed me, and a trial in Madison with Dr. Albertini in 2012 failed me. I have had 7 surgeries in 6 years. I did contact Dr. Weber directly through email and consulted with him in person last July. He responds very quickly to emails. He does not agree with the "cherry picking" approach that has been used to address my recurrences. He even spoke with Dr. Albertini suggesting I try Yervoy and if I fail it then on to ANti-PD1. Dr. A, although I love him, is very conservative when I want to be aggressive while I am healthy. He wants to wait on the "big guns" until they are tweaked more. He worries about colitis and possible death with yervoy. SInce all my recurrences have been contained in my right leg and have been small he thinks surgery is the best option for me and possibly Isolated Limb Perfusion which I adamantly refuse to do. Logistally traveling to Florida was not possible for me for treatment and was out of my insurance network, but I was hoping Dr. Weber could nudge Dr. Albertini in the more aggressive direction. Best of luck to you. Definitely a roller coaster ride I'd be more than willing to catapult myself off!
-
- July 2, 2015 at 2:53 am
Hi Mary,
Not my business, really, But why are you so against limb perfusion? I haven't been faced with needing that, but here are some articles I've reviewed: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/in-transit-melanomaa-little-info.htm
Yes, it is all a circus we'd rather be released from. But…what'cha gonna do? I wish you my best. Celeste
-
- July 2, 2015 at 5:09 pm
Celeste,
Just wondering if i am correct on my thoughts on the 951 patient trial of yervoy as adjuvant? So out of the 475 in ipi arm 234 were relapse free and 476 on placebo 294 were relapse free. So how do these stats say ipi significantly helped rfs? Is it because at 2.74 years there were 45% of the 234 in the ipi arm and 34% in placebo arm still alive? So statistically it doesn’t seem to help with the number of relapses it just helped in survival time of people that had a response to ipi correct? Also looks like the placebo was a iv solution so that may make these numbers look even better for ipi then if it were compared to lets say interferon. Also i did put another call to moffitt today. I called contact info that was on clinical.gov same # i called couple of weeks ago and got answering machine again. I could not find Dr Webers email anywhere and was wondering if you could get it to me? If not i completely understand. -
- July 3, 2015 at 2:03 am
First, sadly, interferon would have been no better than placebo in results and had the control arm been given interferon, they would have been no better off and quite ill.
I think these two quotes say it all: "Between July 10, 2008 and Aug 1, 2011 951 patients were enrolled. 475 = ipi. 476 = placebo. At a median f/u of 2.74 years there were 528 recurrence-free survival events: 234 = ipi vs 294 = placebo. Median recurrence-free survival was 26.1 months for ipi vs 17.1 months for placebo. 3 year recurrence-free survival was 46.5% for ipi vs 34.8% for placebo." "Adjuvant ipi significantly improved recurrence-free survival for patients with completely resected high-risk stage III melanoma."
I would much rather be part of the 46.5% who lived disease free for three years than in the 34.8% of folks who did so. And, yes….only in melanoma….especially before the FDA approval of the anti-PD1 drugs in 2014, (ipi was approved in 2011), and the first of the BRAFi was approved in 2013…are these numbers impressive.
However, if I were choosing….I would not prefer to take ipi as adjuvant treatment. I would prefer anti-PD1. It is clear that the anti-PD1 drugs have a much lower side effect profile and as you can see from the numbers in the NED arm of my study…we ratties are doing pretty well…ie…better than these numbers for ipi. BUT!!!!! You (and I) are still in melanoma land. At best…in patients with disease…the anti-PD1 drugs garner a 30-40% response rate. That still leaves 70-60% of folks with not much. When you look at the ipi/nivo combo treatment….numbers are much better…though side effects are increased over anti-PD1 alone.
It is all a bit of a crap shoot and each of us have to make the best choice we can for ourselves within the confines of the treatments we can attain. When I entered my trial in 2010 it was the ONLY treatment other than interferon even available to me. Luckily it panned out pretty well…but it was leap that I decided to make at that time. You are educating yourself. You are asking questions. Here is the contact info for a very hard working man, with advice rooted in comon sense and incredible knowledge of melanoma: Jeffrey.Weber@Moffitt.org …available on his papers.
I wish you well. c
-
- July 3, 2015 at 2:03 am
First, sadly, interferon would have been no better than placebo in results and had the control arm been given interferon, they would have been no better off and quite ill.
I think these two quotes say it all: "Between July 10, 2008 and Aug 1, 2011 951 patients were enrolled. 475 = ipi. 476 = placebo. At a median f/u of 2.74 years there were 528 recurrence-free survival events: 234 = ipi vs 294 = placebo. Median recurrence-free survival was 26.1 months for ipi vs 17.1 months for placebo. 3 year recurrence-free survival was 46.5% for ipi vs 34.8% for placebo." "Adjuvant ipi significantly improved recurrence-free survival for patients with completely resected high-risk stage III melanoma."
I would much rather be part of the 46.5% who lived disease free for three years than in the 34.8% of folks who did so. And, yes….only in melanoma….especially before the FDA approval of the anti-PD1 drugs in 2014, (ipi was approved in 2011), and the first of the BRAFi was approved in 2013…are these numbers impressive.
However, if I were choosing….I would not prefer to take ipi as adjuvant treatment. I would prefer anti-PD1. It is clear that the anti-PD1 drugs have a much lower side effect profile and as you can see from the numbers in the NED arm of my study…we ratties are doing pretty well…ie…better than these numbers for ipi. BUT!!!!! You (and I) are still in melanoma land. At best…in patients with disease…the anti-PD1 drugs garner a 30-40% response rate. That still leaves 70-60% of folks with not much. When you look at the ipi/nivo combo treatment….numbers are much better…though side effects are increased over anti-PD1 alone.
It is all a bit of a crap shoot and each of us have to make the best choice we can for ourselves within the confines of the treatments we can attain. When I entered my trial in 2010 it was the ONLY treatment other than interferon even available to me. Luckily it panned out pretty well…but it was leap that I decided to make at that time. You are educating yourself. You are asking questions. Here is the contact info for a very hard working man, with advice rooted in comon sense and incredible knowledge of melanoma: Jeffrey.Weber@Moffitt.org …available on his papers.
I wish you well. c
-
- July 3, 2015 at 2:03 am
First, sadly, interferon would have been no better than placebo in results and had the control arm been given interferon, they would have been no better off and quite ill.
I think these two quotes say it all: "Between July 10, 2008 and Aug 1, 2011 951 patients were enrolled. 475 = ipi. 476 = placebo. At a median f/u of 2.74 years there were 528 recurrence-free survival events: 234 = ipi vs 294 = placebo. Median recurrence-free survival was 26.1 months for ipi vs 17.1 months for placebo. 3 year recurrence-free survival was 46.5% for ipi vs 34.8% for placebo." "Adjuvant ipi significantly improved recurrence-free survival for patients with completely resected high-risk stage III melanoma."
I would much rather be part of the 46.5% who lived disease free for three years than in the 34.8% of folks who did so. And, yes….only in melanoma….especially before the FDA approval of the anti-PD1 drugs in 2014, (ipi was approved in 2011), and the first of the BRAFi was approved in 2013…are these numbers impressive.
However, if I were choosing….I would not prefer to take ipi as adjuvant treatment. I would prefer anti-PD1. It is clear that the anti-PD1 drugs have a much lower side effect profile and as you can see from the numbers in the NED arm of my study…we ratties are doing pretty well…ie…better than these numbers for ipi. BUT!!!!! You (and I) are still in melanoma land. At best…in patients with disease…the anti-PD1 drugs garner a 30-40% response rate. That still leaves 70-60% of folks with not much. When you look at the ipi/nivo combo treatment….numbers are much better…though side effects are increased over anti-PD1 alone.
It is all a bit of a crap shoot and each of us have to make the best choice we can for ourselves within the confines of the treatments we can attain. When I entered my trial in 2010 it was the ONLY treatment other than interferon even available to me. Luckily it panned out pretty well…but it was leap that I decided to make at that time. You are educating yourself. You are asking questions. Here is the contact info for a very hard working man, with advice rooted in comon sense and incredible knowledge of melanoma: Jeffrey.Weber@Moffitt.org …available on his papers.
I wish you well. c
-
- July 2, 2015 at 5:09 pm
Celeste,
Just wondering if i am correct on my thoughts on the 951 patient trial of yervoy as adjuvant? So out of the 475 in ipi arm 234 were relapse free and 476 on placebo 294 were relapse free. So how do these stats say ipi significantly helped rfs? Is it because at 2.74 years there were 45% of the 234 in the ipi arm and 34% in placebo arm still alive? So statistically it doesn’t seem to help with the number of relapses it just helped in survival time of people that had a response to ipi correct? Also looks like the placebo was a iv solution so that may make these numbers look even better for ipi then if it were compared to lets say interferon. Also i did put another call to moffitt today. I called contact info that was on clinical.gov same # i called couple of weeks ago and got answering machine again. I could not find Dr Webers email anywhere and was wondering if you could get it to me? If not i completely understand. -
- July 2, 2015 at 5:09 pm
Celeste,
Just wondering if i am correct on my thoughts on the 951 patient trial of yervoy as adjuvant? So out of the 475 in ipi arm 234 were relapse free and 476 on placebo 294 were relapse free. So how do these stats say ipi significantly helped rfs? Is it because at 2.74 years there were 45% of the 234 in the ipi arm and 34% in placebo arm still alive? So statistically it doesn’t seem to help with the number of relapses it just helped in survival time of people that had a response to ipi correct? Also looks like the placebo was a iv solution so that may make these numbers look even better for ipi then if it were compared to lets say interferon. Also i did put another call to moffitt today. I called contact info that was on clinical.gov same # i called couple of weeks ago and got answering machine again. I could not find Dr Webers email anywhere and was wondering if you could get it to me? If not i completely understand. -
- July 3, 2015 at 10:52 pm
Hi Celeste,
My main issue with ILP is that for the few people I have known from FB support groups who have gone that route either had recurrence within 9 months or eventually died. I just feel melaphan (sp?), the chemo used is as outdated as Interfereon. I continue to push for Yervoy but to no avail. I am guessing once I hit stage 4 I'll get my preferred method of treatment. I don't qualify for any current trials due to my prior treatments. Dr. Weber was not a fan of ILP either unless my tumor burden were to increase significantly. Right now the lesions I have had removed were all less than a cm. Just hate the watching and waiting!
-
- July 3, 2015 at 10:52 pm
Hi Celeste,
My main issue with ILP is that for the few people I have known from FB support groups who have gone that route either had recurrence within 9 months or eventually died. I just feel melaphan (sp?), the chemo used is as outdated as Interfereon. I continue to push for Yervoy but to no avail. I am guessing once I hit stage 4 I'll get my preferred method of treatment. I don't qualify for any current trials due to my prior treatments. Dr. Weber was not a fan of ILP either unless my tumor burden were to increase significantly. Right now the lesions I have had removed were all less than a cm. Just hate the watching and waiting!
-
- July 3, 2015 at 10:52 pm
Hi Celeste,
My main issue with ILP is that for the few people I have known from FB support groups who have gone that route either had recurrence within 9 months or eventually died. I just feel melaphan (sp?), the chemo used is as outdated as Interfereon. I continue to push for Yervoy but to no avail. I am guessing once I hit stage 4 I'll get my preferred method of treatment. I don't qualify for any current trials due to my prior treatments. Dr. Weber was not a fan of ILP either unless my tumor burden were to increase significantly. Right now the lesions I have had removed were all less than a cm. Just hate the watching and waiting!
-
- July 2, 2015 at 2:53 am
Hi Mary,
Not my business, really, But why are you so against limb perfusion? I haven't been faced with needing that, but here are some articles I've reviewed: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/in-transit-melanomaa-little-info.htm
Yes, it is all a circus we'd rather be released from. But…what'cha gonna do? I wish you my best. Celeste
-
- July 2, 2015 at 2:53 am
Hi Mary,
Not my business, really, But why are you so against limb perfusion? I haven't been faced with needing that, but here are some articles I've reviewed: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/in-transit-melanomaa-little-info.htm
Yes, it is all a circus we'd rather be released from. But…what'cha gonna do? I wish you my best. Celeste
-
- July 2, 2015 at 3:15 am
Mary,
Small world I’m from neenah. I am definitely going to look into moffit. I also was in madison last week and talked with Dr. McFarland. He basically told me he agreed with my oncoligist at st.E in appleton and said clinical trial is the way to go with interferon the only fda option. I have also heard the limb perfusion word come up for me but my first reaccurance was able to be resected and was too high on my groin for it to work. I have done some reading on it though and seemed to have a high response rate. -
- July 2, 2015 at 3:15 am
Mary,
Small world I’m from neenah. I am definitely going to look into moffit. I also was in madison last week and talked with Dr. McFarland. He basically told me he agreed with my oncoligist at st.E in appleton and said clinical trial is the way to go with interferon the only fda option. I have also heard the limb perfusion word come up for me but my first reaccurance was able to be resected and was too high on my groin for it to work. I have done some reading on it though and seemed to have a high response rate. -
- July 2, 2015 at 3:15 am
Mary,
Small world I’m from neenah. I am definitely going to look into moffit. I also was in madison last week and talked with Dr. McFarland. He basically told me he agreed with my oncoligist at st.E in appleton and said clinical trial is the way to go with interferon the only fda option. I have also heard the limb perfusion word come up for me but my first reaccurance was able to be resected and was too high on my groin for it to work. I have done some reading on it though and seemed to have a high response rate. -
- July 2, 2015 at 2:47 am
Hi Jaimie,
I too am from WI (Appleton) and am stage 3C. I was diagnosed in 2009-long story. Interferon failed me, Leukine injections failed me, and a trial in Madison with Dr. Albertini in 2012 failed me. I have had 7 surgeries in 6 years. I did contact Dr. Weber directly through email and consulted with him in person last July. He responds very quickly to emails. He does not agree with the "cherry picking" approach that has been used to address my recurrences. He even spoke with Dr. Albertini suggesting I try Yervoy and if I fail it then on to ANti-PD1. Dr. A, although I love him, is very conservative when I want to be aggressive while I am healthy. He wants to wait on the "big guns" until they are tweaked more. He worries about colitis and possible death with yervoy. SInce all my recurrences have been contained in my right leg and have been small he thinks surgery is the best option for me and possibly Isolated Limb Perfusion which I adamantly refuse to do. Logistally traveling to Florida was not possible for me for treatment and was out of my insurance network, but I was hoping Dr. Weber could nudge Dr. Albertini in the more aggressive direction. Best of luck to you. Definitely a roller coaster ride I'd be more than willing to catapult myself off!
-
- July 2, 2015 at 2:47 am
Hi Jaimie,
I too am from WI (Appleton) and am stage 3C. I was diagnosed in 2009-long story. Interferon failed me, Leukine injections failed me, and a trial in Madison with Dr. Albertini in 2012 failed me. I have had 7 surgeries in 6 years. I did contact Dr. Weber directly through email and consulted with him in person last July. He responds very quickly to emails. He does not agree with the "cherry picking" approach that has been used to address my recurrences. He even spoke with Dr. Albertini suggesting I try Yervoy and if I fail it then on to ANti-PD1. Dr. A, although I love him, is very conservative when I want to be aggressive while I am healthy. He wants to wait on the "big guns" until they are tweaked more. He worries about colitis and possible death with yervoy. SInce all my recurrences have been contained in my right leg and have been small he thinks surgery is the best option for me and possibly Isolated Limb Perfusion which I adamantly refuse to do. Logistally traveling to Florida was not possible for me for treatment and was out of my insurance network, but I was hoping Dr. Weber could nudge Dr. Albertini in the more aggressive direction. Best of luck to you. Definitely a roller coaster ride I'd be more than willing to catapult myself off!
-
- July 2, 2015 at 12:32 am
Sorry if i double post here. Thank you for the response Celeste as i have a bunch of respect for your knowledge. So the trial I’m looking to get on is either nivo or ipi not a combination. So my problem i need to figure put is if the coin flip chance of getting nivo is worth it. I will have a 50% chance of getting ipi and having to drive 3.5 hours to get it when my local doctor 15 min away can also get it. Im not aware of any nivo/ipi combo trials for 3c resected but of anyone knows of one p
out there I would definitely look into it.
-
- July 1, 2015 at 11:53 pm
Jamie,
You are doing great. The ipi/nivo combo has the best stats going! Period. Most side effects too, but….
There is actually a ton of info on nivo…esp for NED folks. Trust me. I am a stage IV rattie from a nivo trial that started in 2010. Stage IV mind you. Mets in lung, brain, tonsil. Albeit removed with SRS and surgery. Started nivo in 2010. Did it for 2 1/2 years. Still NED. Anti-PD1 alone has a 30-40% response rate in patients with measurable disease. Hard to say for us NED folks. However, we have learned that the lower the disease burden, the better the response. But…here's the results of my trial: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html Keep in mind…you are better off than we were. You are not Stage IV!! On the up side for us…we were a Phase I trial. Granted, we didn't know if we were going to turn purple and grow three heads…but we all got the medicine. In Phase II and III trials…they compare the results to lesser drugs or placebo.
Here is some info on the ipi vs nivo as adjuvant: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html
As far as the ipi/nivo combo for NED and measurable disease peeps, this data out of ASCO 2014 really breaks it down: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/nivoipi-combo-nivo-vs-pembro-pd-l1.html
Hope this helps. No one can make the decisions you have to make but you. However, if I were you…your age, with your kids…I would go for the ipi/nivo combo. Just say'n. I wish you well. celeste
PS You're still fit. You're still you. And…we are all staring death in the eye. Nobody gets out of this alive. But…I'd hang on for as long as I could. That's my plan! c
-
- July 3, 2015 at 3:07 am
Hi Jamie,
I ended up going (diagnosis-wise) straight from stage 1 to 4. I think it went through some lymph nodes in my chest that did show up on the PET scan at the same time.
My feeling about oncologists and treatment plans is that I want a good oddsmaker, since there's no way to tell which treatment(s) will succeed, so what order do you want to do them in, and there can be more to it than picking the best currently available treatment in a clinical trial. Although that may very well be the most odds-on approach — but trying to figuring it out in advance is to me definitely odds-making.
In 2011 I was somewhere in between resected/NED and not given there were brain mets. My doc / oddsmaker got me on IL2 after the surgery and radiation and I ended up with whatever disease was still there being held at bay and not having a detectable recurrence for 2 1/2 years.
One argument for going the IPI-first route rather than IPI-Nivo is to save the Nivo bullet for later — with the possibility that there might be a PD1 combination even more efficacious than the Nivo/IPI combo, that prior Nivo use might exclude you from trying in a clinical trial. If you need it that is. Also if you run into IPI complications, again the lack of Nivo use may leave Nivo open as a future bullet, either in a clinical trial combined with something other than IPI, or alone. If you end up needing it.
Or would prior IPI uses as a single agent disqualify you from doing the IPI/Nivo combo, if you end up needing it while it is still a clinical trial and not an approved combo.
Those different paths, particularly how prior treatments may affect future participation in a given clinical trial, are why it feels like odds-making to me.
In my case when it recurred recently in lymph nodes, I could have re-inducted with IPI, which would "save" the PD1 bullet at least in the context of a clinical trial. But instead I'm using that bullet — in a Nivo combo trial with a different agent (not IPI). Because I know how the stuff can metastasize. So for me I didn't think too much about it and went for the first PD1 combo trial I could get myself into.
I don't mean to send your head around and around, these are just the main considerations I can think of regarding the choice between IPI and IPI/nivo combo. I hope your adjuvant status stays that way through your treatment choices. Sounds like there are some real ones for adjuvant patients finally.
-
- July 3, 2015 at 4:14 am
Kyle,
Thanks for the response…all excellent thoughts. I am definitely trying to consider what you said and more. My gut feeling up to this point is that even if I am using some of my bullets… I need to take a big swing at this now. I just feel if it moves into the other parts of my body it will be harder to stop. I know people are beating this as stage 4 more and more but why not give everything I can while disease is low. Will it pay off for me?…only God knows! I am just trying to do the best educated guess I can. again thanks for chiming in! Every response gets me took look at things at a slightly different angle. In my job I have said I would be a fool to not listen to other people’s ideas about how to accomplish things more efficiently. I am taking the same approach here…The more minds and experience I get to make suggestions the better I think I can make my decision. -
- July 3, 2015 at 4:14 am
Kyle,
Thanks for the response…all excellent thoughts. I am definitely trying to consider what you said and more. My gut feeling up to this point is that even if I am using some of my bullets… I need to take a big swing at this now. I just feel if it moves into the other parts of my body it will be harder to stop. I know people are beating this as stage 4 more and more but why not give everything I can while disease is low. Will it pay off for me?…only God knows! I am just trying to do the best educated guess I can. again thanks for chiming in! Every response gets me took look at things at a slightly different angle. In my job I have said I would be a fool to not listen to other people’s ideas about how to accomplish things more efficiently. I am taking the same approach here…The more minds and experience I get to make suggestions the better I think I can make my decision. -
- July 3, 2015 at 4:14 am
Kyle,
Thanks for the response…all excellent thoughts. I am definitely trying to consider what you said and more. My gut feeling up to this point is that even if I am using some of my bullets… I need to take a big swing at this now. I just feel if it moves into the other parts of my body it will be harder to stop. I know people are beating this as stage 4 more and more but why not give everything I can while disease is low. Will it pay off for me?…only God knows! I am just trying to do the best educated guess I can. again thanks for chiming in! Every response gets me took look at things at a slightly different angle. In my job I have said I would be a fool to not listen to other people’s ideas about how to accomplish things more efficiently. I am taking the same approach here…The more minds and experience I get to make suggestions the better I think I can make my decision.
-
- July 3, 2015 at 3:07 am
Hi Jamie,
I ended up going (diagnosis-wise) straight from stage 1 to 4. I think it went through some lymph nodes in my chest that did show up on the PET scan at the same time.
My feeling about oncologists and treatment plans is that I want a good oddsmaker, since there's no way to tell which treatment(s) will succeed, so what order do you want to do them in, and there can be more to it than picking the best currently available treatment in a clinical trial. Although that may very well be the most odds-on approach — but trying to figuring it out in advance is to me definitely odds-making.
In 2011 I was somewhere in between resected/NED and not given there were brain mets. My doc / oddsmaker got me on IL2 after the surgery and radiation and I ended up with whatever disease was still there being held at bay and not having a detectable recurrence for 2 1/2 years.
One argument for going the IPI-first route rather than IPI-Nivo is to save the Nivo bullet for later — with the possibility that there might be a PD1 combination even more efficacious than the Nivo/IPI combo, that prior Nivo use might exclude you from trying in a clinical trial. If you need it that is. Also if you run into IPI complications, again the lack of Nivo use may leave Nivo open as a future bullet, either in a clinical trial combined with something other than IPI, or alone. If you end up needing it.
Or would prior IPI uses as a single agent disqualify you from doing the IPI/Nivo combo, if you end up needing it while it is still a clinical trial and not an approved combo.
Those different paths, particularly how prior treatments may affect future participation in a given clinical trial, are why it feels like odds-making to me.
In my case when it recurred recently in lymph nodes, I could have re-inducted with IPI, which would "save" the PD1 bullet at least in the context of a clinical trial. But instead I'm using that bullet — in a Nivo combo trial with a different agent (not IPI). Because I know how the stuff can metastasize. So for me I didn't think too much about it and went for the first PD1 combo trial I could get myself into.
I don't mean to send your head around and around, these are just the main considerations I can think of regarding the choice between IPI and IPI/nivo combo. I hope your adjuvant status stays that way through your treatment choices. Sounds like there are some real ones for adjuvant patients finally.
-
- July 3, 2015 at 3:07 am
Hi Jamie,
I ended up going (diagnosis-wise) straight from stage 1 to 4. I think it went through some lymph nodes in my chest that did show up on the PET scan at the same time.
My feeling about oncologists and treatment plans is that I want a good oddsmaker, since there's no way to tell which treatment(s) will succeed, so what order do you want to do them in, and there can be more to it than picking the best currently available treatment in a clinical trial. Although that may very well be the most odds-on approach — but trying to figuring it out in advance is to me definitely odds-making.
In 2011 I was somewhere in between resected/NED and not given there were brain mets. My doc / oddsmaker got me on IL2 after the surgery and radiation and I ended up with whatever disease was still there being held at bay and not having a detectable recurrence for 2 1/2 years.
One argument for going the IPI-first route rather than IPI-Nivo is to save the Nivo bullet for later — with the possibility that there might be a PD1 combination even more efficacious than the Nivo/IPI combo, that prior Nivo use might exclude you from trying in a clinical trial. If you need it that is. Also if you run into IPI complications, again the lack of Nivo use may leave Nivo open as a future bullet, either in a clinical trial combined with something other than IPI, or alone. If you end up needing it.
Or would prior IPI uses as a single agent disqualify you from doing the IPI/Nivo combo, if you end up needing it while it is still a clinical trial and not an approved combo.
Those different paths, particularly how prior treatments may affect future participation in a given clinical trial, are why it feels like odds-making to me.
In my case when it recurred recently in lymph nodes, I could have re-inducted with IPI, which would "save" the PD1 bullet at least in the context of a clinical trial. But instead I'm using that bullet — in a Nivo combo trial with a different agent (not IPI). Because I know how the stuff can metastasize. So for me I didn't think too much about it and went for the first PD1 combo trial I could get myself into.
I don't mean to send your head around and around, these are just the main considerations I can think of regarding the choice between IPI and IPI/nivo combo. I hope your adjuvant status stays that way through your treatment choices. Sounds like there are some real ones for adjuvant patients finally.
-
- July 8, 2015 at 12:18 am
First I will repeat your accolades for all the great people that post on this board! This message board has been extremely helpful and comforting to me!!
My husband is in a similar situation, officially stage IV NED. We are probably going to go with the IPI/Nivo combo. The two things that I'll add are, we are driving a bit to get to a center that has experience giving these drugs. We asked about a closer facility to which the doc said, "doable but not advisable." I'm not sure of the process but if there is a, "must be kept cold," "must be mixed for a full minute" or whatever you want the location doing it by the book. In the trial I am assuming there is no placebo group. It would stink to drive the 3.5 hours and sit through whatever only to find out it was just saline.
With that said, a huge thank you to all the ratties out there that have made IPI/Nivo an option!!!!
Kathy
-
- July 8, 2015 at 12:18 am
First I will repeat your accolades for all the great people that post on this board! This message board has been extremely helpful and comforting to me!!
My husband is in a similar situation, officially stage IV NED. We are probably going to go with the IPI/Nivo combo. The two things that I'll add are, we are driving a bit to get to a center that has experience giving these drugs. We asked about a closer facility to which the doc said, "doable but not advisable." I'm not sure of the process but if there is a, "must be kept cold," "must be mixed for a full minute" or whatever you want the location doing it by the book. In the trial I am assuming there is no placebo group. It would stink to drive the 3.5 hours and sit through whatever only to find out it was just saline.
With that said, a huge thank you to all the ratties out there that have made IPI/Nivo an option!!!!
Kathy
-
- July 8, 2015 at 12:18 am
First I will repeat your accolades for all the great people that post on this board! This message board has been extremely helpful and comforting to me!!
My husband is in a similar situation, officially stage IV NED. We are probably going to go with the IPI/Nivo combo. The two things that I'll add are, we are driving a bit to get to a center that has experience giving these drugs. We asked about a closer facility to which the doc said, "doable but not advisable." I'm not sure of the process but if there is a, "must be kept cold," "must be mixed for a full minute" or whatever you want the location doing it by the book. In the trial I am assuming there is no placebo group. It would stink to drive the 3.5 hours and sit through whatever only to find out it was just saline.
With that said, a huge thank you to all the ratties out there that have made IPI/Nivo an option!!!!
Kathy
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.