› Forums › General Melanoma Community › Clinical Trial nivolumab vs YERVOY (ipilimumab) (ROLL CALL)
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Speedster.
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- March 20, 2015 at 2:24 pm
We met with the melanoma specialist yesterday. My husband has ctage lllc resected with surgery almost 4 weeks ago. Our dr is doing the clinical trial of nivolumab vs yervoy, 2 arm study. Not sure which drug my husband will get. He said this trial just started to see how it works for stage lllc. Originally, our oncologist offered radiation and interferon and then refered to the melanoma specialist at Baylow Sammons texas oncology dallas. After speaking with the melanoma onc yesterday, he felt interferon would not be best option and radiation would not either plu he could not perticipate in the trial if he took radiation. The clinical trial drugs are approed by FDA for stage 4 melanoma and he said they are working on other forms of cancer as well. Dr feels he will meet all criteria to enter trial and he signed all contract papers yesterday. I hope this was a good choice, we are young with 2 children. My husband works in the sun and uses sun screen but now, after being at his job for 6 years he feels he needs a job chnage in the midst of all this, im afraid for him to get a new job knowing he will start treatment soon and what boss would put up with that from a new employee. His work is working with him now very well and all they want is him to be healed, and we hope maybe they will try to get him on other equipment in a cab to keep him out of the sun, they have worked well with keeping him out of as much sun as possible. I feel we have a lot on our plate as all you you do on this forum. Lastnight my husband started crying that he did't want to die. I know you all fear that, I have hope though from reading this forum seeing all you stage 4 and 2, 5 and plus years NED. I really need to keep talking him into getting on this forum because it has given me hope. Any advice is much needed. Have you been on these drugs? What stage where you then, how long have you been NED?
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- March 20, 2015 at 2:34 pm
Aundrea,
I started a nivo trial in 2010, in the NED arm. My last dose of nivo was in June of 2013. I remain NED. Having recently talked with Dr. Weber about this trial, my own experiences, as well as thouse of my 33 fellow ratties, I think it is a wonderful opportunity. Hopefully, sooner rather than later, as more of us complete such trials we will finally have something better than interferon as an adjuvant treatment. My story is on my blog as is a recent post with some positive information regarding durable reaponses to ipi as well. I wish you and your husband my best. Celeste
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- March 20, 2015 at 2:34 pm
Aundrea,
I started a nivo trial in 2010, in the NED arm. My last dose of nivo was in June of 2013. I remain NED. Having recently talked with Dr. Weber about this trial, my own experiences, as well as thouse of my 33 fellow ratties, I think it is a wonderful opportunity. Hopefully, sooner rather than later, as more of us complete such trials we will finally have something better than interferon as an adjuvant treatment. My story is on my blog as is a recent post with some positive information regarding durable reaponses to ipi as well. I wish you and your husband my best. Celeste
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- March 20, 2015 at 2:34 pm
Aundrea,
I started a nivo trial in 2010, in the NED arm. My last dose of nivo was in June of 2013. I remain NED. Having recently talked with Dr. Weber about this trial, my own experiences, as well as thouse of my 33 fellow ratties, I think it is a wonderful opportunity. Hopefully, sooner rather than later, as more of us complete such trials we will finally have something better than interferon as an adjuvant treatment. My story is on my blog as is a recent post with some positive information regarding durable reaponses to ipi as well. I wish you and your husband my best. Celeste
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- March 20, 2015 at 2:57 pm
This sounds like a very good trial option. I just posted about my husband (IIIC) who is in the Ipilimumab (Yervoy) vs Interferon adjuvant trial. He is in the 3mg Ipi arm of the trial. He did have significant side effects but has managed to work most of the time throughout (He was hospitalized for an adrenal crisis though). He has a job that is flexible and was able to work from home at times. He remains NED 2 years after diagnosis. Last dose of Ipi was August of 2013. Celeste referenced her trial and on her blog there is a lot of excellent information. There was another adjuvant trial of Ipi (10mg) vs placebo which demonstrated significant improvement in relapse free survival in the ipi arm (it hasn't met its endpoint yet for overall survival). That trial was reported on at ASCO last June. Good luck!
Kate
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- March 20, 2015 at 2:57 pm
This sounds like a very good trial option. I just posted about my husband (IIIC) who is in the Ipilimumab (Yervoy) vs Interferon adjuvant trial. He is in the 3mg Ipi arm of the trial. He did have significant side effects but has managed to work most of the time throughout (He was hospitalized for an adrenal crisis though). He has a job that is flexible and was able to work from home at times. He remains NED 2 years after diagnosis. Last dose of Ipi was August of 2013. Celeste referenced her trial and on her blog there is a lot of excellent information. There was another adjuvant trial of Ipi (10mg) vs placebo which demonstrated significant improvement in relapse free survival in the ipi arm (it hasn't met its endpoint yet for overall survival). That trial was reported on at ASCO last June. Good luck!
Kate
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- March 20, 2015 at 2:57 pm
This sounds like a very good trial option. I just posted about my husband (IIIC) who is in the Ipilimumab (Yervoy) vs Interferon adjuvant trial. He is in the 3mg Ipi arm of the trial. He did have significant side effects but has managed to work most of the time throughout (He was hospitalized for an adrenal crisis though). He has a job that is flexible and was able to work from home at times. He remains NED 2 years after diagnosis. Last dose of Ipi was August of 2013. Celeste referenced her trial and on her blog there is a lot of excellent information. There was another adjuvant trial of Ipi (10mg) vs placebo which demonstrated significant improvement in relapse free survival in the ipi arm (it hasn't met its endpoint yet for overall survival). That trial was reported on at ASCO last June. Good luck!
Kate
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- March 20, 2015 at 3:49 pm
That sounds like a wonderful trial for a stage 3 person. Both meds are really good. I did yervoy with minor side affects but I was not a responder. I'm currently on the other pd1 with almost no side affects which are also minor. With it many tumors have shrank.
For the sun he might try special clothing. Coolibar is expensive but has the highest sun rating protection and he would remain cool in them for his work. Also denim material has a high sun rating but can get rather hot and long ago I ended up with sun burned legs under my jeans. Also very important to wear a hat. Not just a ball cap but like a safari hat with the material down the neck or bucket hat which they also have at coolibar and other places. I also wear a sun wrap that goes around my face and front of my neck from coolibar. I used to even wear a sun visor that covered my face but I've been off the braf meds long enough I don't need that much. Off course sun block for what isn't covered. I get the kids spf 100 works when wet stuff.
So yes on these meds and proper sun protection he has a good shot of making it for a long time. Oh. Nutrition is also important. Very hard for most people to eat as healthy and natural as possible. Fortunately we can cheat with things like green machine juice by naked once a day and things like that to give his body the nutrition it needs.
Artie
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- March 20, 2015 at 3:49 pm
That sounds like a wonderful trial for a stage 3 person. Both meds are really good. I did yervoy with minor side affects but I was not a responder. I'm currently on the other pd1 with almost no side affects which are also minor. With it many tumors have shrank.
For the sun he might try special clothing. Coolibar is expensive but has the highest sun rating protection and he would remain cool in them for his work. Also denim material has a high sun rating but can get rather hot and long ago I ended up with sun burned legs under my jeans. Also very important to wear a hat. Not just a ball cap but like a safari hat with the material down the neck or bucket hat which they also have at coolibar and other places. I also wear a sun wrap that goes around my face and front of my neck from coolibar. I used to even wear a sun visor that covered my face but I've been off the braf meds long enough I don't need that much. Off course sun block for what isn't covered. I get the kids spf 100 works when wet stuff.
So yes on these meds and proper sun protection he has a good shot of making it for a long time. Oh. Nutrition is also important. Very hard for most people to eat as healthy and natural as possible. Fortunately we can cheat with things like green machine juice by naked once a day and things like that to give his body the nutrition it needs.
Artie
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- March 20, 2015 at 3:49 pm
That sounds like a wonderful trial for a stage 3 person. Both meds are really good. I did yervoy with minor side affects but I was not a responder. I'm currently on the other pd1 with almost no side affects which are also minor. With it many tumors have shrank.
For the sun he might try special clothing. Coolibar is expensive but has the highest sun rating protection and he would remain cool in them for his work. Also denim material has a high sun rating but can get rather hot and long ago I ended up with sun burned legs under my jeans. Also very important to wear a hat. Not just a ball cap but like a safari hat with the material down the neck or bucket hat which they also have at coolibar and other places. I also wear a sun wrap that goes around my face and front of my neck from coolibar. I used to even wear a sun visor that covered my face but I've been off the braf meds long enough I don't need that much. Off course sun block for what isn't covered. I get the kids spf 100 works when wet stuff.
So yes on these meds and proper sun protection he has a good shot of making it for a long time. Oh. Nutrition is also important. Very hard for most people to eat as healthy and natural as possible. Fortunately we can cheat with things like green machine juice by naked once a day and things like that to give his body the nutrition it needs.
Artie
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- March 20, 2015 at 4:45 pm
Hi andrea
i remember sobbing all night one night after my diagnosis I really feel for you and your husband. I think the trial is a great opportunity as it is hard to get access to these drugs otherwise. Can he go off the trial if something better becomes available or if it's not working?
i wish you the best of luck and by the way I have never felt better and I am stage 4 on keytruda
anne-Louise
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- March 20, 2015 at 4:45 pm
Hi andrea
i remember sobbing all night one night after my diagnosis I really feel for you and your husband. I think the trial is a great opportunity as it is hard to get access to these drugs otherwise. Can he go off the trial if something better becomes available or if it's not working?
i wish you the best of luck and by the way I have never felt better and I am stage 4 on keytruda
anne-Louise
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- March 20, 2015 at 4:45 pm
Hi andrea
i remember sobbing all night one night after my diagnosis I really feel for you and your husband. I think the trial is a great opportunity as it is hard to get access to these drugs otherwise. Can he go off the trial if something better becomes available or if it's not working?
i wish you the best of luck and by the way I have never felt better and I am stage 4 on keytruda
anne-Louise
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- March 20, 2015 at 7:15 pm
Hi Aundrea, this is really great news to get access to either of these two drugs. The stage 3 members have had very limited access to the new Immunotherapy drugs. I have been lucky enough to be in a drug trial of these two drugs myself for the last 14 months. I am stage 4 with lung and brain mets( brain treated by cyberknife Oct 2013). Drug trials help to push the understanding of which treatments work best, and future Melanoma patients will benefit greatly. The other thing to think about is that many in the past have tried to get access to the new Pd-1 drugs such as Nivo and have been denied. So this is really good news and I wish your husband the best in his journey. One last thing about being (NED), many people have great results with the new immunotherapy drugs with many of us being what is called partial responders where we see shrinkage of tumors and stable disease with no progression. NED would be great but being stable and not progressing has given me more time than I thought was possible 2 years ago. Last point I would like to make is about getting your husband to join, which might be difficult since most things I read at the beginning of this journey turned me off the Internet. It might take him some time to process all the changes. If you tell him that people have been writing to him with advice it might catch his attention. All the best!!! Ed
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- March 20, 2015 at 7:15 pm
Hi Aundrea, this is really great news to get access to either of these two drugs. The stage 3 members have had very limited access to the new Immunotherapy drugs. I have been lucky enough to be in a drug trial of these two drugs myself for the last 14 months. I am stage 4 with lung and brain mets( brain treated by cyberknife Oct 2013). Drug trials help to push the understanding of which treatments work best, and future Melanoma patients will benefit greatly. The other thing to think about is that many in the past have tried to get access to the new Pd-1 drugs such as Nivo and have been denied. So this is really good news and I wish your husband the best in his journey. One last thing about being (NED), many people have great results with the new immunotherapy drugs with many of us being what is called partial responders where we see shrinkage of tumors and stable disease with no progression. NED would be great but being stable and not progressing has given me more time than I thought was possible 2 years ago. Last point I would like to make is about getting your husband to join, which might be difficult since most things I read at the beginning of this journey turned me off the Internet. It might take him some time to process all the changes. If you tell him that people have been writing to him with advice it might catch his attention. All the best!!! Ed
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- March 20, 2015 at 7:15 pm
Hi Aundrea, this is really great news to get access to either of these two drugs. The stage 3 members have had very limited access to the new Immunotherapy drugs. I have been lucky enough to be in a drug trial of these two drugs myself for the last 14 months. I am stage 4 with lung and brain mets( brain treated by cyberknife Oct 2013). Drug trials help to push the understanding of which treatments work best, and future Melanoma patients will benefit greatly. The other thing to think about is that many in the past have tried to get access to the new Pd-1 drugs such as Nivo and have been denied. So this is really good news and I wish your husband the best in his journey. One last thing about being (NED), many people have great results with the new immunotherapy drugs with many of us being what is called partial responders where we see shrinkage of tumors and stable disease with no progression. NED would be great but being stable and not progressing has given me more time than I thought was possible 2 years ago. Last point I would like to make is about getting your husband to join, which might be difficult since most things I read at the beginning of this journey turned me off the Internet. It might take him some time to process all the changes. If you tell him that people have been writing to him with advice it might catch his attention. All the best!!! Ed
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- March 20, 2015 at 7:39 pm
Thanks everyone for the comments. We hope he meets all the criteria and is approved for the study. I am going to show my husband the comments here and hope he will get involved. I see lots of information and hope from this forum. While we were in the dr yesterday, I almost felt as if this was our only option. I still wish he could of got the radiation to target the neck and had the trial as well but it don't work that way. I hope his body will accept the drug with no complications and I hope that this being a blind study he gets the best of the 2 drugs. I have more reserch to do when I get off work to look and the studies and statistics of both drugs.
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- March 21, 2015 at 3:41 am
A diagnosis of melanoma is no longer an automatic death sentence. Access to immunotherapy drugs at Stage III is a real opportunity to take advantge of the recent advances in melanoma treatment. Two years ago I was Stage III, had surgery, then radiation and there was no other viable option. Six months later I was stage IV and got into a trial with ipi and either nivo or a placebo. I probably got the nivo, because within three months I was NED and have remained so.
You and your husband are in for a challenging journey and I wish you both well in meeting the challenges that are coming your way.
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- March 21, 2015 at 3:41 am
A diagnosis of melanoma is no longer an automatic death sentence. Access to immunotherapy drugs at Stage III is a real opportunity to take advantge of the recent advances in melanoma treatment. Two years ago I was Stage III, had surgery, then radiation and there was no other viable option. Six months later I was stage IV and got into a trial with ipi and either nivo or a placebo. I probably got the nivo, because within three months I was NED and have remained so.
You and your husband are in for a challenging journey and I wish you both well in meeting the challenges that are coming your way.
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- March 21, 2015 at 3:41 am
A diagnosis of melanoma is no longer an automatic death sentence. Access to immunotherapy drugs at Stage III is a real opportunity to take advantge of the recent advances in melanoma treatment. Two years ago I was Stage III, had surgery, then radiation and there was no other viable option. Six months later I was stage IV and got into a trial with ipi and either nivo or a placebo. I probably got the nivo, because within three months I was NED and have remained so.
You and your husband are in for a challenging journey and I wish you both well in meeting the challenges that are coming your way.
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- March 22, 2015 at 10:13 pm
Great news. I am so glad you have options. My husband is NED after going from stage 3Cto 4. Long story, but read my post from about 10 days ago. Anyway- my husband cannot look at this forum. Sometimes there is sad and scary news and he really can't handle it. So I am on it a lot and I share the good news and research. It works out well for us. I want him to be positive as much as he can be. He responded much like your husband did – it was so hard to see his grief and for me to stay strong during that time. Let us know how it goes. Sending good vibes your way.
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- March 22, 2015 at 10:13 pm
Great news. I am so glad you have options. My husband is NED after going from stage 3Cto 4. Long story, but read my post from about 10 days ago. Anyway- my husband cannot look at this forum. Sometimes there is sad and scary news and he really can't handle it. So I am on it a lot and I share the good news and research. It works out well for us. I want him to be positive as much as he can be. He responded much like your husband did – it was so hard to see his grief and for me to stay strong during that time. Let us know how it goes. Sending good vibes your way.
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- March 22, 2015 at 10:13 pm
Great news. I am so glad you have options. My husband is NED after going from stage 3Cto 4. Long story, but read my post from about 10 days ago. Anyway- my husband cannot look at this forum. Sometimes there is sad and scary news and he really can't handle it. So I am on it a lot and I share the good news and research. It works out well for us. I want him to be positive as much as he can be. He responded much like your husband did – it was so hard to see his grief and for me to stay strong during that time. Let us know how it goes. Sending good vibes your way.
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- March 20, 2015 at 7:39 pm
Thanks everyone for the comments. We hope he meets all the criteria and is approved for the study. I am going to show my husband the comments here and hope he will get involved. I see lots of information and hope from this forum. While we were in the dr yesterday, I almost felt as if this was our only option. I still wish he could of got the radiation to target the neck and had the trial as well but it don't work that way. I hope his body will accept the drug with no complications and I hope that this being a blind study he gets the best of the 2 drugs. I have more reserch to do when I get off work to look and the studies and statistics of both drugs.
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- March 20, 2015 at 7:39 pm
Thanks everyone for the comments. We hope he meets all the criteria and is approved for the study. I am going to show my husband the comments here and hope he will get involved. I see lots of information and hope from this forum. While we were in the dr yesterday, I almost felt as if this was our only option. I still wish he could of got the radiation to target the neck and had the trial as well but it don't work that way. I hope his body will accept the drug with no complications and I hope that this being a blind study he gets the best of the 2 drugs. I have more reserch to do when I get off work to look and the studies and statistics of both drugs.
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- March 26, 2015 at 7:45 pm
Aundrea,
I've got Stage III resected melanoma that had traveled to the sentinel node and beyond to the node basin of my left arm pit. I've signed to consent to be in the same trail at Baylor Sammons as four oncologist I trust have all, without reservation, recommended that trail. They say if they could they'd give me both Ipi and Nicvo if they could, yet that's not possible at Stage III and is in trial for Stage IV now. Oddly, the only reservation I received was from two oncologist at MD Anderson as they lost a patient on ipi due to liver failure. I can understand that, yet all the others don't agree, not in the least. I look forward to seeing your husband soon.
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- March 26, 2015 at 7:45 pm
Aundrea,
I've got Stage III resected melanoma that had traveled to the sentinel node and beyond to the node basin of my left arm pit. I've signed to consent to be in the same trail at Baylor Sammons as four oncologist I trust have all, without reservation, recommended that trail. They say if they could they'd give me both Ipi and Nicvo if they could, yet that's not possible at Stage III and is in trial for Stage IV now. Oddly, the only reservation I received was from two oncologist at MD Anderson as they lost a patient on ipi due to liver failure. I can understand that, yet all the others don't agree, not in the least. I look forward to seeing your husband soon.
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- March 26, 2015 at 7:45 pm
Aundrea,
I've got Stage III resected melanoma that had traveled to the sentinel node and beyond to the node basin of my left arm pit. I've signed to consent to be in the same trail at Baylor Sammons as four oncologist I trust have all, without reservation, recommended that trail. They say if they could they'd give me both Ipi and Nicvo if they could, yet that's not possible at Stage III and is in trial for Stage IV now. Oddly, the only reservation I received was from two oncologist at MD Anderson as they lost a patient on ipi due to liver failure. I can understand that, yet all the others don't agree, not in the least. I look forward to seeing your husband soon.
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