› Forums › Pediatric & AYA Melanoma Community › New to post finally! Have many questions!
- This topic has 39 replies, 6 voices, and was last updated 9 years, 5 months ago by
Coneflowers.
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- October 4, 2015 at 10:28 am
So I have been trying to sign up on here for what seems like forever! Not sure why I was having problems…maybe it was my old computer. Anyway, was wondering if anyone can recommend a pediatric melanoma specialist? Yes, have more questons, but will start with this…Thank you!
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- October 4, 2015 at 6:07 pm
I'm so sorry you are dealing with melanoma. Where are you located? There are good melanoma centers all over the country so if you narrow it down you will get some recommendations. Fen
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- October 4, 2015 at 10:18 pm
Hi, we are at university of Michigan right now, but live in Indiana.
My daughter was born with it, and she also has a rare type. So I am searching for a place that might have seen this before. Yes, I know how crazy this sounds but it is true unfortunately. Her doctor said she did not want to say she was one in a million, but she pretty much it…
Thank you!
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- October 4, 2015 at 10:18 pm
Hi, we are at university of Michigan right now, but live in Indiana.
My daughter was born with it, and she also has a rare type. So I am searching for a place that might have seen this before. Yes, I know how crazy this sounds but it is true unfortunately. Her doctor said she did not want to say she was one in a million, but she pretty much it…
Thank you!
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- October 4, 2015 at 10:18 pm
Hi, we are at university of Michigan right now, but live in Indiana.
My daughter was born with it, and she also has a rare type. So I am searching for a place that might have seen this before. Yes, I know how crazy this sounds but it is true unfortunately. Her doctor said she did not want to say she was one in a million, but she pretty much it…
Thank you!
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- October 6, 2015 at 11:08 am
St. Jude's also has worked on pediatric melanoma cases as well.
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- October 6, 2015 at 6:08 pm
We tried to get her in at St. Jude but they would only do a consult. She has a rare sub type called pigment synthesizing melanoma. It has already spread and she has started opdivo. I just really need to get her somewhere that has seen this before. Thank you for commenting!
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- October 6, 2015 at 6:08 pm
We tried to get her in at St. Jude but they would only do a consult. She has a rare sub type called pigment synthesizing melanoma. It has already spread and she has started opdivo. I just really need to get her somewhere that has seen this before. Thank you for commenting!
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- October 6, 2015 at 6:08 pm
We tried to get her in at St. Jude but they would only do a consult. She has a rare sub type called pigment synthesizing melanoma. It has already spread and she has started opdivo. I just really need to get her somewhere that has seen this before. Thank you for commenting!
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- October 6, 2015 at 6:34 pm
As much as we've been slamming MD Anderson here on MPIP lately, I wonder if they have expertise in your child's specific disease type. I've heard of them having expertise in some other rare subtypes.
They do seem to have a specialty for pediatric melanoma. See this page, http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/childhood-melanoma/index.html.
If you do go to MDA, realize you may have to ride herd on their business office on some issues like insurance approvals. But they seem to have some very specific areas of expertise.
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- October 6, 2015 at 6:34 pm
As much as we've been slamming MD Anderson here on MPIP lately, I wonder if they have expertise in your child's specific disease type. I've heard of them having expertise in some other rare subtypes.
They do seem to have a specialty for pediatric melanoma. See this page, http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/childhood-melanoma/index.html.
If you do go to MDA, realize you may have to ride herd on their business office on some issues like insurance approvals. But they seem to have some very specific areas of expertise.
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- October 6, 2015 at 6:42 pm
We have been thinking about trying to go to MD Anderson but have heard some not so great stuff. We have also thought about dana fabor / bostons childrens. Does anyone know anything about them by chance? Thank you!
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- October 6, 2015 at 6:42 pm
We have been thinking about trying to go to MD Anderson but have heard some not so great stuff. We have also thought about dana fabor / bostons childrens. Does anyone know anything about them by chance? Thank you!
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- October 6, 2015 at 6:42 pm
We have been thinking about trying to go to MD Anderson but have heard some not so great stuff. We have also thought about dana fabor / bostons childrens. Does anyone know anything about them by chance? Thank you!
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- October 7, 2015 at 3:11 am
It woould be a shame if those threads on MDA discouraged you from seeing someone there, especially if there is an MDA doc who has some experience treating your daughter's rare melanoma type.
My takeway from those discussions (and I've been there once) is that the place is very big, and sometimes your case can get bogged down in administration. If you're healthy enough to be on top of it (and as parents you probably are) you can likely make the system work for you.
I also know couple of people who were happy with the care they got at Dana Farber.
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- October 7, 2015 at 3:11 am
It woould be a shame if those threads on MDA discouraged you from seeing someone there, especially if there is an MDA doc who has some experience treating your daughter's rare melanoma type.
My takeway from those discussions (and I've been there once) is that the place is very big, and sometimes your case can get bogged down in administration. If you're healthy enough to be on top of it (and as parents you probably are) you can likely make the system work for you.
I also know couple of people who were happy with the care they got at Dana Farber.
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- October 7, 2015 at 3:11 am
It woould be a shame if those threads on MDA discouraged you from seeing someone there, especially if there is an MDA doc who has some experience treating your daughter's rare melanoma type.
My takeway from those discussions (and I've been there once) is that the place is very big, and sometimes your case can get bogged down in administration. If you're healthy enough to be on top of it (and as parents you probably are) you can likely make the system work for you.
I also know couple of people who were happy with the care they got at Dana Farber.
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- October 7, 2015 at 11:22 am
Thank you so much for commenting.
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- October 7, 2015 at 11:22 am
Thank you so much for commenting.
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- October 7, 2015 at 11:22 am
Thank you so much for commenting.
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- October 6, 2015 at 6:34 pm
As much as we've been slamming MD Anderson here on MPIP lately, I wonder if they have expertise in your child's specific disease type. I've heard of them having expertise in some other rare subtypes.
They do seem to have a specialty for pediatric melanoma. See this page, http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/childhood-melanoma/index.html.
If you do go to MDA, realize you may have to ride herd on their business office on some issues like insurance approvals. But they seem to have some very specific areas of expertise.
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- October 6, 2015 at 9:02 pm
Hi – I don't know which facility would be best for your child, but this physician Dr. Richardson (contact information below) who trained at Mass General has written one of the only review papers on the rare subtype of melanoma you are dealing with – pigment synthesizing melanoma. I am willing to bet if you contacted his office, he would have some ideas or put could you on a path to a clinician who has familarity with your child's specific kind of cancer. Good luck.
Stephen K. Richardson, MD
Dermatology
Office Locations
Dermatology Associates of Tallahassee, P.A.
1707 Riggins Road
Building A
Tallahassee, FL 32308Phone: 850-877-4134 -
- October 6, 2015 at 9:02 pm
Hi – I don't know which facility would be best for your child, but this physician Dr. Richardson (contact information below) who trained at Mass General has written one of the only review papers on the rare subtype of melanoma you are dealing with – pigment synthesizing melanoma. I am willing to bet if you contacted his office, he would have some ideas or put could you on a path to a clinician who has familarity with your child's specific kind of cancer. Good luck.
Stephen K. Richardson, MD
Dermatology
Office Locations
Dermatology Associates of Tallahassee, P.A.
1707 Riggins Road
Building A
Tallahassee, FL 32308Phone: 850-877-4134-
- October 7, 2015 at 11:26 am
Thank you so very much! I will contact them today! I am going to post a new thread and see if anyone else chimes in.
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- October 7, 2015 at 5:31 pm
I called and left a message for his nurse. Thanks again!
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- October 7, 2015 at 5:31 pm
I called and left a message for his nurse. Thanks again!
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- October 7, 2015 at 5:31 pm
I called and left a message for his nurse. Thanks again!
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- October 7, 2015 at 11:26 am
Thank you so very much! I will contact them today! I am going to post a new thread and see if anyone else chimes in.
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- October 7, 2015 at 11:26 am
Thank you so very much! I will contact them today! I am going to post a new thread and see if anyone else chimes in.
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- October 6, 2015 at 9:02 pm
Hi – I don't know which facility would be best for your child, but this physician Dr. Richardson (contact information below) who trained at Mass General has written one of the only review papers on the rare subtype of melanoma you are dealing with – pigment synthesizing melanoma. I am willing to bet if you contacted his office, he would have some ideas or put could you on a path to a clinician who has familarity with your child's specific kind of cancer. Good luck.
Stephen K. Richardson, MD
Dermatology
Office Locations
Dermatology Associates of Tallahassee, P.A.
1707 Riggins Road
Building A
Tallahassee, FL 32308Phone: 850-877-4134
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Tagged: pediatric melanoma
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