› Forums › Mucosal Melanoma Community › Mucosal Melanoma and Yurvoy?
- This topic has 57 replies, 7 voices, and was last updated 8 years, 11 months ago by
Lori Ann.
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- May 26, 2016 at 3:57 am
I was diagnosed in December, 2014 with mucosal melanoma of the nasal cavity. I had it surgically removed and did 6 weeks of radiation therapy. In April, 2016, there was another tumor at the back of my nose. Again, I had it surgically removed. My oncologist gave me information on immunotherapy called Yurvoy. Has anyone done this for nasal mucosal melanoma and how did it go? I don't know whether radiation is an option and am meeting with my radiologist next week. My oncologist didn't push for the immunotherapy. I felt like he had to offer me something so that was it.
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- May 26, 2016 at 1:07 pm
Hi – Could you tell me how you were diagnosed with the original lesion in your nose? What did it look like?
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- May 27, 2016 at 1:24 pm
I was having trouble breathing. It felt like something was blocking my nostril. I went to an ENT and she saw a polyp and said that it was routine to remove it. So I had it removed and tested. I never really saw anything because it was kind of high up in my nose. What I did see just looked like sort of like flesh. The second one was in the back of my nose. I saw it through a camera that my doctor uses and it just looked like a fleshy bump. Good luck and feel free to contact me again!
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- May 27, 2016 at 1:24 pm
I was having trouble breathing. It felt like something was blocking my nostril. I went to an ENT and she saw a polyp and said that it was routine to remove it. So I had it removed and tested. I never really saw anything because it was kind of high up in my nose. What I did see just looked like sort of like flesh. The second one was in the back of my nose. I saw it through a camera that my doctor uses and it just looked like a fleshy bump. Good luck and feel free to contact me again!
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- May 27, 2016 at 1:24 pm
I was having trouble breathing. It felt like something was blocking my nostril. I went to an ENT and she saw a polyp and said that it was routine to remove it. So I had it removed and tested. I never really saw anything because it was kind of high up in my nose. What I did see just looked like sort of like flesh. The second one was in the back of my nose. I saw it through a camera that my doctor uses and it just looked like a fleshy bump. Good luck and feel free to contact me again!
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- May 26, 2016 at 1:14 pm
Hello Lori Ann – Please obtain a second opinion. Yervoy has not been shown to be very effective on mucosal melanoma but it is not the only immunotherapy option out there. A clinical trial might also be a way for you to get an effective treatment – again, you could find out from a second opinion. I am sure that your oncologist is a wonderful doctor, but you need a specialist who is current.
Best wishes.
Mary
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- May 26, 2016 at 1:14 pm
Hello Lori Ann – Please obtain a second opinion. Yervoy has not been shown to be very effective on mucosal melanoma but it is not the only immunotherapy option out there. A clinical trial might also be a way for you to get an effective treatment – again, you could find out from a second opinion. I am sure that your oncologist is a wonderful doctor, but you need a specialist who is current.
Best wishes.
Mary
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- May 26, 2016 at 1:14 pm
Hello Lori Ann – Please obtain a second opinion. Yervoy has not been shown to be very effective on mucosal melanoma but it is not the only immunotherapy option out there. A clinical trial might also be a way for you to get an effective treatment – again, you could find out from a second opinion. I am sure that your oncologist is a wonderful doctor, but you need a specialist who is current.
Best wishes.
Mary
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- May 27, 2016 at 1:27 pm
I go to Rush University in Chicago and both my ENT and oncologist have (and are) treating several MM patients. Do you feel their recommendation isn't current? They just called this morning and again recommended Yurvoy. They didnt' recommend radiation as I had it last year and this tumor is at the very back of my nose…much closer to my brain, etc.
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- May 27, 2016 at 1:27 pm
I go to Rush University in Chicago and both my ENT and oncologist have (and are) treating several MM patients. Do you feel their recommendation isn't current? They just called this morning and again recommended Yurvoy. They didnt' recommend radiation as I had it last year and this tumor is at the very back of my nose…much closer to my brain, etc.
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- May 27, 2016 at 1:27 pm
I go to Rush University in Chicago and both my ENT and oncologist have (and are) treating several MM patients. Do you feel their recommendation isn't current? They just called this morning and again recommended Yurvoy. They didnt' recommend radiation as I had it last year and this tumor is at the very back of my nose…much closer to my brain, etc.
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- May 27, 2016 at 3:33 pm
Hi Mary. Thank you for your input! My doctor has said it's not as effective as it is on skin cancer. Since MM is so rare, there is no data on it. Both the onclogist and ENT think I need to do something "system-wide" and this is what they're suggesting.
I was wondering how you came to this conclusion? if it's from personal experience or are you in the medical field or do you research alot? As you might know, this is such a difficult decision and I appreciate all the input.
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- May 28, 2016 at 9:22 am
Hello Lori Ann
When I was going through my treatment in 2013 my oncologist suggested yervoy as a potential option if it looked like the chemo was not working. One week later, this same oncologist was quoted as saying that yervoy was shown to have a 6.7% efficacy rate on mucosal melanoma. In my mathmatical mind, that told me that there was a 93.3% chance of it not working – very close to a snowball's chance in hell. Obviously, I have not gotten over this.
Since then the anti PD-1 immunotherapies have been FDA approved and the combination of Yervoy and the anti-PD-1 drugs are showing very encouraging results. Ask you doctor, and then get a second opinion and ask again.
You should not take medical advice from me. But as a mucosal melanoma patient I would want to know that every option was considered and I would want to know why the option being suggested to me was the best option for me.
Your doctor is right about there being no data on mucosal melanoma. The disease is rare but you are unique. You deserve the very best treatment for you. Don't stop being your best advocate.
All the best.
Mary
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- May 28, 2016 at 9:22 am
Hello Lori Ann
When I was going through my treatment in 2013 my oncologist suggested yervoy as a potential option if it looked like the chemo was not working. One week later, this same oncologist was quoted as saying that yervoy was shown to have a 6.7% efficacy rate on mucosal melanoma. In my mathmatical mind, that told me that there was a 93.3% chance of it not working – very close to a snowball's chance in hell. Obviously, I have not gotten over this.
Since then the anti PD-1 immunotherapies have been FDA approved and the combination of Yervoy and the anti-PD-1 drugs are showing very encouraging results. Ask you doctor, and then get a second opinion and ask again.
You should not take medical advice from me. But as a mucosal melanoma patient I would want to know that every option was considered and I would want to know why the option being suggested to me was the best option for me.
Your doctor is right about there being no data on mucosal melanoma. The disease is rare but you are unique. You deserve the very best treatment for you. Don't stop being your best advocate.
All the best.
Mary
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- June 1, 2016 at 1:56 pm
Hi Mary! My doctor gave me similar numbers. He said that in cutaneous melanoma it reduced the recurrence rate by 12% but with MM he couldn't say whether it'd be the same, more or less. Those aren't very good numbers considering right now they surgically removed it all so I'm cancer free. He offered this to me last year when I was first diagnosed but there was even less information then.
I'm more inclined to do something but there aren't many options. I have been searching but am not coming up with anything.
Thank you and all the best to you too!
LORI
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- June 1, 2016 at 1:56 pm
Hi Mary! My doctor gave me similar numbers. He said that in cutaneous melanoma it reduced the recurrence rate by 12% but with MM he couldn't say whether it'd be the same, more or less. Those aren't very good numbers considering right now they surgically removed it all so I'm cancer free. He offered this to me last year when I was first diagnosed but there was even less information then.
I'm more inclined to do something but there aren't many options. I have been searching but am not coming up with anything.
Thank you and all the best to you too!
LORI
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- June 1, 2016 at 5:24 pm
Lori,
I posted this for you the other day. It is straight out of ASCO this year and specifically addresses mucosal melanoma, specifically the response rate to anti-PD1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html
celeste
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- June 1, 2016 at 5:24 pm
Lori,
I posted this for you the other day. It is straight out of ASCO this year and specifically addresses mucosal melanoma, specifically the response rate to anti-PD1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html
celeste
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- June 1, 2016 at 5:24 pm
Lori,
I posted this for you the other day. It is straight out of ASCO this year and specifically addresses mucosal melanoma, specifically the response rate to anti-PD1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-anti-pd1-for-acral-and.html
celeste
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- June 2, 2016 at 3:09 am
Celeste, just wanted to thank you for posting this. It is not my thread but I always appreciate the up-to-date research you post.
Lori Ann, I do not know much about this, having mucosal melanoma that has not spread to lymph nodes (stage 1), but what Celeste and Mary post about Yervoy I wish I had known in time to encourage a friend with stage 3 mucosal melanoma who was started on Yervoy to pursue a different initial systemic treatment. I am far from any sort of expert in this area, but for what it's worth based on research and personal testimony, I personally, if in this position with mucosal melanoma, would push for something other than Yervoy alone.
Best wishes to you!
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- June 2, 2016 at 3:09 am
Celeste, just wanted to thank you for posting this. It is not my thread but I always appreciate the up-to-date research you post.
Lori Ann, I do not know much about this, having mucosal melanoma that has not spread to lymph nodes (stage 1), but what Celeste and Mary post about Yervoy I wish I had known in time to encourage a friend with stage 3 mucosal melanoma who was started on Yervoy to pursue a different initial systemic treatment. I am far from any sort of expert in this area, but for what it's worth based on research and personal testimony, I personally, if in this position with mucosal melanoma, would push for something other than Yervoy alone.
Best wishes to you!
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- June 2, 2016 at 3:09 am
Celeste, just wanted to thank you for posting this. It is not my thread but I always appreciate the up-to-date research you post.
Lori Ann, I do not know much about this, having mucosal melanoma that has not spread to lymph nodes (stage 1), but what Celeste and Mary post about Yervoy I wish I had known in time to encourage a friend with stage 3 mucosal melanoma who was started on Yervoy to pursue a different initial systemic treatment. I am far from any sort of expert in this area, but for what it's worth based on research and personal testimony, I personally, if in this position with mucosal melanoma, would push for something other than Yervoy alone.
Best wishes to you!
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- June 3, 2016 at 5:42 pm
Thanks CHD. I have asked my doctor what other immunotherapies are available and am waiting for a response. Are you saying Yervoy along with something is a better option or no Yervoy at all? Sorry. Does your opinion change if this is adjuvant treatment? Thanks for your input.
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- June 3, 2016 at 5:42 pm
Thanks CHD. I have asked my doctor what other immunotherapies are available and am waiting for a response. Are you saying Yervoy along with something is a better option or no Yervoy at all? Sorry. Does your opinion change if this is adjuvant treatment? Thanks for your input.
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- June 3, 2016 at 5:42 pm
Thanks CHD. I have asked my doctor what other immunotherapies are available and am waiting for a response. Are you saying Yervoy along with something is a better option or no Yervoy at all? Sorry. Does your opinion change if this is adjuvant treatment? Thanks for your input.
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- June 1, 2016 at 1:56 pm
Hi Mary! My doctor gave me similar numbers. He said that in cutaneous melanoma it reduced the recurrence rate by 12% but with MM he couldn't say whether it'd be the same, more or less. Those aren't very good numbers considering right now they surgically removed it all so I'm cancer free. He offered this to me last year when I was first diagnosed but there was even less information then.
I'm more inclined to do something but there aren't many options. I have been searching but am not coming up with anything.
Thank you and all the best to you too!
LORI
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- May 28, 2016 at 9:22 am
Hello Lori Ann
When I was going through my treatment in 2013 my oncologist suggested yervoy as a potential option if it looked like the chemo was not working. One week later, this same oncologist was quoted as saying that yervoy was shown to have a 6.7% efficacy rate on mucosal melanoma. In my mathmatical mind, that told me that there was a 93.3% chance of it not working – very close to a snowball's chance in hell. Obviously, I have not gotten over this.
Since then the anti PD-1 immunotherapies have been FDA approved and the combination of Yervoy and the anti-PD-1 drugs are showing very encouraging results. Ask you doctor, and then get a second opinion and ask again.
You should not take medical advice from me. But as a mucosal melanoma patient I would want to know that every option was considered and I would want to know why the option being suggested to me was the best option for me.
Your doctor is right about there being no data on mucosal melanoma. The disease is rare but you are unique. You deserve the very best treatment for you. Don't stop being your best advocate.
All the best.
Mary
-
- May 27, 2016 at 3:33 pm
Hi Mary. Thank you for your input! My doctor has said it's not as effective as it is on skin cancer. Since MM is so rare, there is no data on it. Both the onclogist and ENT think I need to do something "system-wide" and this is what they're suggesting.
I was wondering how you came to this conclusion? if it's from personal experience or are you in the medical field or do you research alot? As you might know, this is such a difficult decision and I appreciate all the input.
-
- May 27, 2016 at 3:33 pm
Hi Mary. Thank you for your input! My doctor has said it's not as effective as it is on skin cancer. Since MM is so rare, there is no data on it. Both the onclogist and ENT think I need to do something "system-wide" and this is what they're suggesting.
I was wondering how you came to this conclusion? if it's from personal experience or are you in the medical field or do you research alot? As you might know, this is such a difficult decision and I appreciate all the input.
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- May 26, 2016 at 1:18 pm
Hi Lori Ann, I have a couple of links for you that might help you prepare for your next visit with your Oncologist and radiologist. The videos are from top Melanoma Oncologist and they explain most of the current treatment options. https://www.youtube.com/watch?v=Qd9fCi001n0 The first video talks about Ipi (yervoy) at the 14min mark and the Dr. is Jason Luke. The second video features Dr. Michael :Postow from Memorial Sloan Kettering in New York, if you go to the 24min mark he starts talking about Immunotherapy treatments Yervoy and Pd-1 drugs like Nivo or Pembro. https://www.youtube.com/watch?v=eofW8d4J6sI . Mucosal melanoma are challenging and I am sure others on the forum with specific Mucosal Melanoma experiences will give you more specific advice. Best Wishes!!!! Ed
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- May 26, 2016 at 1:18 pm
Hi Lori Ann, I have a couple of links for you that might help you prepare for your next visit with your Oncologist and radiologist. The videos are from top Melanoma Oncologist and they explain most of the current treatment options. https://www.youtube.com/watch?v=Qd9fCi001n0 The first video talks about Ipi (yervoy) at the 14min mark and the Dr. is Jason Luke. The second video features Dr. Michael :Postow from Memorial Sloan Kettering in New York, if you go to the 24min mark he starts talking about Immunotherapy treatments Yervoy and Pd-1 drugs like Nivo or Pembro. https://www.youtube.com/watch?v=eofW8d4J6sI . Mucosal melanoma are challenging and I am sure others on the forum with specific Mucosal Melanoma experiences will give you more specific advice. Best Wishes!!!! Ed
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- May 26, 2016 at 1:18 pm
Hi Lori Ann, I have a couple of links for you that might help you prepare for your next visit with your Oncologist and radiologist. The videos are from top Melanoma Oncologist and they explain most of the current treatment options. https://www.youtube.com/watch?v=Qd9fCi001n0 The first video talks about Ipi (yervoy) at the 14min mark and the Dr. is Jason Luke. The second video features Dr. Michael :Postow from Memorial Sloan Kettering in New York, if you go to the 24min mark he starts talking about Immunotherapy treatments Yervoy and Pd-1 drugs like Nivo or Pembro. https://www.youtube.com/watch?v=eofW8d4J6sI . Mucosal melanoma are challenging and I am sure others on the forum with specific Mucosal Melanoma experiences will give you more specific advice. Best Wishes!!!! Ed
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- May 28, 2016 at 12:56 pm
Hi Lori-Ann,
So sorry for what you are dealing with! Mucosal melanoma is a tough thing to deal with for sure. Ed gave you some good info. Additionally, tumor typing (hopefully this has already been done….but still can be if not already) can be super important and helpful in choosing therapies. Mucosal melanoma tends to be more often KIT and NRAS positive than some others. Here is an article addressing NRAS positive folks… Should that be your type…it might be helpful to speak to your doc about…
Wishing you my best. Celeste
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- May 28, 2016 at 12:56 pm
Hi Lori-Ann,
So sorry for what you are dealing with! Mucosal melanoma is a tough thing to deal with for sure. Ed gave you some good info. Additionally, tumor typing (hopefully this has already been done….but still can be if not already) can be super important and helpful in choosing therapies. Mucosal melanoma tends to be more often KIT and NRAS positive than some others. Here is an article addressing NRAS positive folks… Should that be your type…it might be helpful to speak to your doc about…
Wishing you my best. Celeste
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- May 28, 2016 at 12:56 pm
Hi Lori-Ann,
So sorry for what you are dealing with! Mucosal melanoma is a tough thing to deal with for sure. Ed gave you some good info. Additionally, tumor typing (hopefully this has already been done….but still can be if not already) can be super important and helpful in choosing therapies. Mucosal melanoma tends to be more often KIT and NRAS positive than some others. Here is an article addressing NRAS positive folks… Should that be your type…it might be helpful to speak to your doc about…
Wishing you my best. Celeste
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- May 28, 2016 at 1:29 pm
And in my daily purusal of ASCO 2016…I just found this….
Hope it helps. celeste
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- May 28, 2016 at 1:29 pm
And in my daily purusal of ASCO 2016…I just found this….
Hope it helps. celeste
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- May 28, 2016 at 1:29 pm
And in my daily purusal of ASCO 2016…I just found this….
Hope it helps. celeste
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- June 3, 2016 at 2:33 pm
Sorry to hear of this diagnosis for you. My wife has anal MM (resected in Nov 2014, returned to lungs, liver, bone and brain in April 2016) and is taking ipi+nivo. We've seen well known experts at several leading institutions frequently mentioned on this list and have heard from each that the response rate they expect among MM is 'a little less' than the response rate they see among cutaneous metastatic cases, they still expect around 50% to respond.
I'm not a doc. If in your shoes I would think about:
1) seeing at least 3 well-known experts who are currently treating MM cases to get their input – Dr. Hodi at Dana Farber, Dr. Chapman at Sloan Kettering are a couple, but you'll find a number of others recommended on this site. Most willnot do phone consults, you have to go and see them.
2) figuring out why they are recommending Ipi alone, rather than the combo (Ipi+nivo). Is this adjuvant for you? Even still, not sure Ipi has better outcomes than a Pd1 alone, and side effects of the latter appear more tolerable. See Celeste's posts on the new adjuvant studies coming out. If not adjuvant, my understanding is that the combo is delivering the best results right now. Someone please correct me if I'm wrong here.
I hope this helps, good luck!
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- June 3, 2016 at 2:33 pm
Sorry to hear of this diagnosis for you. My wife has anal MM (resected in Nov 2014, returned to lungs, liver, bone and brain in April 2016) and is taking ipi+nivo. We've seen well known experts at several leading institutions frequently mentioned on this list and have heard from each that the response rate they expect among MM is 'a little less' than the response rate they see among cutaneous metastatic cases, they still expect around 50% to respond.
I'm not a doc. If in your shoes I would think about:
1) seeing at least 3 well-known experts who are currently treating MM cases to get their input – Dr. Hodi at Dana Farber, Dr. Chapman at Sloan Kettering are a couple, but you'll find a number of others recommended on this site. Most willnot do phone consults, you have to go and see them.
2) figuring out why they are recommending Ipi alone, rather than the combo (Ipi+nivo). Is this adjuvant for you? Even still, not sure Ipi has better outcomes than a Pd1 alone, and side effects of the latter appear more tolerable. See Celeste's posts on the new adjuvant studies coming out. If not adjuvant, my understanding is that the combo is delivering the best results right now. Someone please correct me if I'm wrong here.
I hope this helps, good luck!
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- June 3, 2016 at 2:33 pm
Sorry to hear of this diagnosis for you. My wife has anal MM (resected in Nov 2014, returned to lungs, liver, bone and brain in April 2016) and is taking ipi+nivo. We've seen well known experts at several leading institutions frequently mentioned on this list and have heard from each that the response rate they expect among MM is 'a little less' than the response rate they see among cutaneous metastatic cases, they still expect around 50% to respond.
I'm not a doc. If in your shoes I would think about:
1) seeing at least 3 well-known experts who are currently treating MM cases to get their input – Dr. Hodi at Dana Farber, Dr. Chapman at Sloan Kettering are a couple, but you'll find a number of others recommended on this site. Most willnot do phone consults, you have to go and see them.
2) figuring out why they are recommending Ipi alone, rather than the combo (Ipi+nivo). Is this adjuvant for you? Even still, not sure Ipi has better outcomes than a Pd1 alone, and side effects of the latter appear more tolerable. See Celeste's posts on the new adjuvant studies coming out. If not adjuvant, my understanding is that the combo is delivering the best results right now. Someone please correct me if I'm wrong here.
I hope this helps, good luck!
Tagged: mucosal melanoma
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