› Forums › Mucosal Melanoma Community › Survey for mucosal melanoma patients
- This topic has 21 replies, 4 voices, and was last updated 9 years, 1 month ago by
CHD.
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- March 3, 2015 at 9:34 pm
Dear MPIP Community:
The MRF is working to have a bigger and more impactful presence in the mucosal melanoma space and we want to hear from patients who have been impacted by this rare form of melanoma. Please help us by taking this 9 question survey. Your feedback will help guide our decisions on future advocacy and education efforts.
The survey can be found HERE. Thank you in advance for your help! Please feel free to share this survey with other people impacted by mucosal melanoma – we truly appreciate it!
Sincerely,
Shelby – MRF
- Replies
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- March 4, 2015 at 4:02 am
Thank you so much for inviting feedback from mucosal melanoma patients. At times it feels like a very lonely disease, with even our specialists telling us they simply do not have enough research to go on. And it seems the insurance companies just really don't have a clue. There is a real lack of awareness that there is a significant difference in cause, prognosis, and treatment between these two very different types of melanoma.
Appreciated!!
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- March 4, 2015 at 4:02 am
Thank you so much for inviting feedback from mucosal melanoma patients. At times it feels like a very lonely disease, with even our specialists telling us they simply do not have enough research to go on. And it seems the insurance companies just really don't have a clue. There is a real lack of awareness that there is a significant difference in cause, prognosis, and treatment between these two very different types of melanoma.
Appreciated!!
-
- March 4, 2015 at 4:52 pm
Dear CHD:
Thank you so much for the feedback. We are looking forward to the survey responses so we can make some improvements. You're right, it is a big struggle, especially with insurance companies. We appreciate your help! If you ever think of anything we can do, please don't hesitate to let me know at [email protected].
Sincerely,
Shelby – MRF
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- March 4, 2015 at 5:32 pm
As a mucosal melanoma patient, I can tell you that not only is is difficult to find information about mucosal melanoma but I have not even come across anyone who has it or has even heard of it. The comments back and forth between people with cutaneous melanoma include vernacular that is completely foreign to us.
Thank you for this.
Mary
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- March 6, 2015 at 2:34 am
It's so true. Few people have even heard of it. One amazing woman reached out to me on a different forum through a PM and I have been emailing her for over a year now, someone with the same type of mucosal melanoma I have. She just recently progressed to stage IV and it is such a different experience from that of the cutaneous melanoma patients who post regularly on the forums. So many brave fighters, but it has just been so nice to be able to talk with someone with a similar experience. Mary, I don't know how to PM here, but I would love to talk to others with mucosal melanoma, especially those with vulvovaginal melanoma. Mine is stage I-II and currently NED, but that seems to mean something very different than it would if I had cutaneous melanoma of a similar stage, and I would love to talk to kindred spirits.
It would be wonderful to have a mucosal melanoma subforum, but I'm not sure there are enough of us to even keep one going. Such a rare form of melanoma.
Cheri
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- March 6, 2015 at 2:34 am
It's so true. Few people have even heard of it. One amazing woman reached out to me on a different forum through a PM and I have been emailing her for over a year now, someone with the same type of mucosal melanoma I have. She just recently progressed to stage IV and it is such a different experience from that of the cutaneous melanoma patients who post regularly on the forums. So many brave fighters, but it has just been so nice to be able to talk with someone with a similar experience. Mary, I don't know how to PM here, but I would love to talk to others with mucosal melanoma, especially those with vulvovaginal melanoma. Mine is stage I-II and currently NED, but that seems to mean something very different than it would if I had cutaneous melanoma of a similar stage, and I would love to talk to kindred spirits.
It would be wonderful to have a mucosal melanoma subforum, but I'm not sure there are enough of us to even keep one going. Such a rare form of melanoma.
Cheri
-
- March 6, 2015 at 2:34 am
It's so true. Few people have even heard of it. One amazing woman reached out to me on a different forum through a PM and I have been emailing her for over a year now, someone with the same type of mucosal melanoma I have. She just recently progressed to stage IV and it is such a different experience from that of the cutaneous melanoma patients who post regularly on the forums. So many brave fighters, but it has just been so nice to be able to talk with someone with a similar experience. Mary, I don't know how to PM here, but I would love to talk to others with mucosal melanoma, especially those with vulvovaginal melanoma. Mine is stage I-II and currently NED, but that seems to mean something very different than it would if I had cutaneous melanoma of a similar stage, and I would love to talk to kindred spirits.
It would be wonderful to have a mucosal melanoma subforum, but I'm not sure there are enough of us to even keep one going. Such a rare form of melanoma.
Cheri
-
- March 4, 2015 at 5:32 pm
As a mucosal melanoma patient, I can tell you that not only is is difficult to find information about mucosal melanoma but I have not even come across anyone who has it or has even heard of it. The comments back and forth between people with cutaneous melanoma include vernacular that is completely foreign to us.
Thank you for this.
Mary
-
- March 4, 2015 at 5:32 pm
As a mucosal melanoma patient, I can tell you that not only is is difficult to find information about mucosal melanoma but I have not even come across anyone who has it or has even heard of it. The comments back and forth between people with cutaneous melanoma include vernacular that is completely foreign to us.
Thank you for this.
Mary
-
- March 4, 2015 at 4:52 pm
Dear CHD:
Thank you so much for the feedback. We are looking forward to the survey responses so we can make some improvements. You're right, it is a big struggle, especially with insurance companies. We appreciate your help! If you ever think of anything we can do, please don't hesitate to let me know at [email protected].
Sincerely,
Shelby – MRF
-
- March 4, 2015 at 4:52 pm
Dear CHD:
Thank you so much for the feedback. We are looking forward to the survey responses so we can make some improvements. You're right, it is a big struggle, especially with insurance companies. We appreciate your help! If you ever think of anything we can do, please don't hesitate to let me know at [email protected].
Sincerely,
Shelby – MRF
-
- March 4, 2015 at 4:02 am
Thank you so much for inviting feedback from mucosal melanoma patients. At times it feels like a very lonely disease, with even our specialists telling us they simply do not have enough research to go on. And it seems the insurance companies just really don't have a clue. There is a real lack of awareness that there is a significant difference in cause, prognosis, and treatment between these two very different types of melanoma.
Appreciated!!
-
- March 14, 2015 at 8:17 am
HI
i struggle as well with the fact how extremely rare and deadly mucosal melanoma is. People with melanoma are describing their battle of 10 or more with disease it makes me angry as anyone with mucosal would only dream about being alive for 10 years after diagnosis….I was diagnosed a year ago, at the age of 36 with, with mucosal melanoma of vagina ( fornix), since then I had surgery, ipimunalab and now stage 4 on pd1 inhibitor – pembrolizumab . I started writing blog about it all : https://marialudmila.wordpress.com/
I would like to get in touch with other members from this topic, doctors told me its one in 25000000 and even then it would happen afte age r 53 so it feels extra lonely for me
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- March 14, 2015 at 8:17 am
HI
i struggle as well with the fact how extremely rare and deadly mucosal melanoma is. People with melanoma are describing their battle of 10 or more with disease it makes me angry as anyone with mucosal would only dream about being alive for 10 years after diagnosis….I was diagnosed a year ago, at the age of 36 with, with mucosal melanoma of vagina ( fornix), since then I had surgery, ipimunalab and now stage 4 on pd1 inhibitor – pembrolizumab . I started writing blog about it all : https://marialudmila.wordpress.com/
I would like to get in touch with other members from this topic, doctors told me its one in 25000000 and even then it would happen afte age r 53 so it feels extra lonely for me
-
- March 20, 2015 at 3:22 am
Maria,
I just wanted to say hi and reach out. It is hard to have mucosal melanoma with such a different prognosis from cutaneous melanoma and can feel very lonely. I was only 45 when diagnosed, and I know one other woman with vulvovaginal melanoma who was 44. I continue to be at stage I-II 22 months after my first vulvectomy, but I have had 3 of them, and my friend progressed to stage IV in February. It is so hard. I have two sons in middle school, and her kids are older but still young, and it is just a lonely place to be. Even my specialist told me there is just so little research for us, they still have to rely on the data from cutaneous melanoma, even knowing how different the two types of melanoma really are.
But there are others of us out here and you are not alone.
Cheri
-
- March 20, 2015 at 3:22 am
Maria,
I just wanted to say hi and reach out. It is hard to have mucosal melanoma with such a different prognosis from cutaneous melanoma and can feel very lonely. I was only 45 when diagnosed, and I know one other woman with vulvovaginal melanoma who was 44. I continue to be at stage I-II 22 months after my first vulvectomy, but I have had 3 of them, and my friend progressed to stage IV in February. It is so hard. I have two sons in middle school, and her kids are older but still young, and it is just a lonely place to be. Even my specialist told me there is just so little research for us, they still have to rely on the data from cutaneous melanoma, even knowing how different the two types of melanoma really are.
But there are others of us out here and you are not alone.
Cheri
-
- March 20, 2015 at 3:22 am
Maria,
I just wanted to say hi and reach out. It is hard to have mucosal melanoma with such a different prognosis from cutaneous melanoma and can feel very lonely. I was only 45 when diagnosed, and I know one other woman with vulvovaginal melanoma who was 44. I continue to be at stage I-II 22 months after my first vulvectomy, but I have had 3 of them, and my friend progressed to stage IV in February. It is so hard. I have two sons in middle school, and her kids are older but still young, and it is just a lonely place to be. Even my specialist told me there is just so little research for us, they still have to rely on the data from cutaneous melanoma, even knowing how different the two types of melanoma really are.
But there are others of us out here and you are not alone.
Cheri
-
- March 14, 2015 at 8:17 am
HI
i struggle as well with the fact how extremely rare and deadly mucosal melanoma is. People with melanoma are describing their battle of 10 or more with disease it makes me angry as anyone with mucosal would only dream about being alive for 10 years after diagnosis….I was diagnosed a year ago, at the age of 36 with, with mucosal melanoma of vagina ( fornix), since then I had surgery, ipimunalab and now stage 4 on pd1 inhibitor – pembrolizumab . I started writing blog about it all : https://marialudmila.wordpress.com/
I would like to get in touch with other members from this topic, doctors told me its one in 25000000 and even then it would happen afte age r 53 so it feels extra lonely for me
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Tagged: mucosal melanoma
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