› Forums › General Melanoma Community › Pigment synthesizing melanoma
- This topic has 27 replies, 5 voices, and was last updated 8 years, 7 months ago by
tbmorgan.
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- October 7, 2015 at 11:35 am
Looking for someone that might have experience with this. My daughters case is very rare, as she was born with this rare type of melanoma. We think it was growing as she was growing, as she has it in many places. Liver, lungs, bone, scalp. She has started opdivo and just turned 6 months old. Any help at all would be greatly appreciated.
Thank you!
- Replies
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- October 7, 2015 at 1:11 pm
Can you tell us what type of rare melanoma it ? ie mucosal or whatever
How it was discovered? and if you give us your information or fill in the profile page it might help us to help you.
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- October 7, 2015 at 5:17 pm
It is called pigment sythesizing melanoma. Some people call it animal type melanoma. She was born with a skin lesion, that was blue.
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- October 7, 2015 at 5:17 pm
It is called pigment sythesizing melanoma. Some people call it animal type melanoma. She was born with a skin lesion, that was blue.
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- October 7, 2015 at 5:17 pm
It is called pigment sythesizing melanoma. Some people call it animal type melanoma. She was born with a skin lesion, that was blue.
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- October 8, 2015 at 1:53 am
You might want to also ask over at the MIF forum (http://forum.melanomainternational.org/mif/). The moderator/patient advocate there is very knowledgeable and plugged in.
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- October 8, 2015 at 1:53 am
You might want to also ask over at the MIF forum (http://forum.melanomainternational.org/mif/). The moderator/patient advocate there is very knowledgeable and plugged in.
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- October 8, 2015 at 1:53 am
You might want to also ask over at the MIF forum (http://forum.melanomainternational.org/mif/). The moderator/patient advocate there is very knowledgeable and plugged in.
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- October 8, 2015 at 12:03 pm
I don't know anything about this rare form of melanoma, but just wanted to say how sorry I am that you poor little mite is already fighting this disease. Kids physiology is so different to adults, even information about adult cases might not be so relevant to a newborn. I wish you strength and hope that you are al coping ok.
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- October 8, 2015 at 10:16 pm
Her doctors are not really sure what will happen. I can only find 2 other reported cases of this. Then of course it does not say much! Ugh! Her doctor also read it…I think she must have been able to see more. She said the one baby did chemotherapy, but the report was from 2002 I think. My baby has started opdivo, we will do a couple more rounds then see if it has helped. I never ever in a million years would had thought something like this could happen. When I tell people she has melanoma they look at me like I have 2 heads. Then they say like melanoma from the sun. Well yes and no! Thank you for your kind words!
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- October 8, 2015 at 10:16 pm
Her doctors are not really sure what will happen. I can only find 2 other reported cases of this. Then of course it does not say much! Ugh! Her doctor also read it…I think she must have been able to see more. She said the one baby did chemotherapy, but the report was from 2002 I think. My baby has started opdivo, we will do a couple more rounds then see if it has helped. I never ever in a million years would had thought something like this could happen. When I tell people she has melanoma they look at me like I have 2 heads. Then they say like melanoma from the sun. Well yes and no! Thank you for your kind words!
-
- October 8, 2015 at 10:16 pm
Her doctors are not really sure what will happen. I can only find 2 other reported cases of this. Then of course it does not say much! Ugh! Her doctor also read it…I think she must have been able to see more. She said the one baby did chemotherapy, but the report was from 2002 I think. My baby has started opdivo, we will do a couple more rounds then see if it has helped. I never ever in a million years would had thought something like this could happen. When I tell people she has melanoma they look at me like I have 2 heads. Then they say like melanoma from the sun. Well yes and no! Thank you for your kind words!
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- October 8, 2015 at 12:03 pm
I don't know anything about this rare form of melanoma, but just wanted to say how sorry I am that you poor little mite is already fighting this disease. Kids physiology is so different to adults, even information about adult cases might not be so relevant to a newborn. I wish you strength and hope that you are al coping ok.
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- October 8, 2015 at 12:03 pm
I don't know anything about this rare form of melanoma, but just wanted to say how sorry I am that you poor little mite is already fighting this disease. Kids physiology is so different to adults, even information about adult cases might not be so relevant to a newborn. I wish you strength and hope that you are al coping ok.
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- October 9, 2015 at 10:29 pm
Hello,
My son was born August 2013 with a moderate size primary melanoma on the back of his brain. I am not sure if his type of melanoma is the same as your daughter, but I have experience with having a child with congenital stage 4 melanoma as his disease spread to the skin within first months of life. You may have received some communication from me by email thru Brenda at MRF, but I will include a few things.
I highly recommend you reach out to Dr Cynthia Hertzog at MD Anderson and Dr Melinda Merchant at the NIH in Bethesda. Both Dr's are working on Pediatric Melanoma and both Dr's have knowledge of any/all trials available for children.
I also recommend you have the NIH do a full genetic survey of any biopsed tumor. My son TJ is on Everolimus because they found some mutations in his TSC1 and TSC2 genes that may be interfering with a genetic pathway allowing his cancer to grow, i think it is called the mTOR pathway. My son did not test postive for any other cancer mutations except for those 2 anomolies.
My son is 2 now and labeled stable but he is not cured. He has had 19 hours of brain surgery to remove the primary lesion and so far MRI's show no significant progression in his brain or on his skin. He has 50 + skin lesions, all very small, and we fully expect him to be on immunotherapy at some point in the future, so I would really appreciate any info you learn from your experience with Opdivo.
Just know that my wife and I are praying for your family and we understand what you are going through.
Tobin
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- October 9, 2015 at 10:29 pm
Hello,
My son was born August 2013 with a moderate size primary melanoma on the back of his brain. I am not sure if his type of melanoma is the same as your daughter, but I have experience with having a child with congenital stage 4 melanoma as his disease spread to the skin within first months of life. You may have received some communication from me by email thru Brenda at MRF, but I will include a few things.
I highly recommend you reach out to Dr Cynthia Hertzog at MD Anderson and Dr Melinda Merchant at the NIH in Bethesda. Both Dr's are working on Pediatric Melanoma and both Dr's have knowledge of any/all trials available for children.
I also recommend you have the NIH do a full genetic survey of any biopsed tumor. My son TJ is on Everolimus because they found some mutations in his TSC1 and TSC2 genes that may be interfering with a genetic pathway allowing his cancer to grow, i think it is called the mTOR pathway. My son did not test postive for any other cancer mutations except for those 2 anomolies.
My son is 2 now and labeled stable but he is not cured. He has had 19 hours of brain surgery to remove the primary lesion and so far MRI's show no significant progression in his brain or on his skin. He has 50 + skin lesions, all very small, and we fully expect him to be on immunotherapy at some point in the future, so I would really appreciate any info you learn from your experience with Opdivo.
Just know that my wife and I are praying for your family and we understand what you are going through.
Tobin
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- October 10, 2015 at 12:30 am
Hi,
Thank you so much for commenting! I did not get your contact info, but have really been hoping to talk to you. I will send Brenda a message!
We are at U of M and I at one point did talk with Melinda Merchant on the phone and so did her doctors.
U of M is doing the full genetic sequencing. They did it once already, but are doing it again because it did not all turn out?? Not really sure…
We also had St. Jude review her case. I have been told over and over again how rare this is. I am sure you have too!
I do not know if you can private message on here or not. If so you can send me a message. I just signed up on here and do not really know the site that well.
I look forward to talking more with you!
Thanks!
Amanda
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- October 10, 2015 at 12:30 am
Hi,
Thank you so much for commenting! I did not get your contact info, but have really been hoping to talk to you. I will send Brenda a message!
We are at U of M and I at one point did talk with Melinda Merchant on the phone and so did her doctors.
U of M is doing the full genetic sequencing. They did it once already, but are doing it again because it did not all turn out?? Not really sure…
We also had St. Jude review her case. I have been told over and over again how rare this is. I am sure you have too!
I do not know if you can private message on here or not. If so you can send me a message. I just signed up on here and do not really know the site that well.
I look forward to talking more with you!
Thanks!
Amanda
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- October 11, 2015 at 12:11 am
Amanda, tried to use the site to send u a private message but do no think it worked.
emails
tobin [email protected]
amanda. [email protected]
my wife Amanda, crazy coincidence, said she would love to hear from you
-
- October 11, 2015 at 12:11 am
Amanda, tried to use the site to send u a private message but do no think it worked.
emails
tobin [email protected]
amanda. [email protected]
my wife Amanda, crazy coincidence, said she would love to hear from you
-
- October 11, 2015 at 12:11 am
Amanda, tried to use the site to send u a private message but do no think it worked.
emails
tobin [email protected]
amanda. [email protected]
my wife Amanda, crazy coincidence, said she would love to hear from you
-
- October 10, 2015 at 12:30 am
Hi,
Thank you so much for commenting! I did not get your contact info, but have really been hoping to talk to you. I will send Brenda a message!
We are at U of M and I at one point did talk with Melinda Merchant on the phone and so did her doctors.
U of M is doing the full genetic sequencing. They did it once already, but are doing it again because it did not all turn out?? Not really sure…
We also had St. Jude review her case. I have been told over and over again how rare this is. I am sure you have too!
I do not know if you can private message on here or not. If so you can send me a message. I just signed up on here and do not really know the site that well.
I look forward to talking more with you!
Thanks!
Amanda
-
- October 9, 2015 at 10:29 pm
Hello,
My son was born August 2013 with a moderate size primary melanoma on the back of his brain. I am not sure if his type of melanoma is the same as your daughter, but I have experience with having a child with congenital stage 4 melanoma as his disease spread to the skin within first months of life. You may have received some communication from me by email thru Brenda at MRF, but I will include a few things.
I highly recommend you reach out to Dr Cynthia Hertzog at MD Anderson and Dr Melinda Merchant at the NIH in Bethesda. Both Dr's are working on Pediatric Melanoma and both Dr's have knowledge of any/all trials available for children.
I also recommend you have the NIH do a full genetic survey of any biopsed tumor. My son TJ is on Everolimus because they found some mutations in his TSC1 and TSC2 genes that may be interfering with a genetic pathway allowing his cancer to grow, i think it is called the mTOR pathway. My son did not test postive for any other cancer mutations except for those 2 anomolies.
My son is 2 now and labeled stable but he is not cured. He has had 19 hours of brain surgery to remove the primary lesion and so far MRI's show no significant progression in his brain or on his skin. He has 50 + skin lesions, all very small, and we fully expect him to be on immunotherapy at some point in the future, so I would really appreciate any info you learn from your experience with Opdivo.
Just know that my wife and I are praying for your family and we understand what you are going through.
Tobin
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