› Forums › General Melanoma Community › Second Opinion!?
- This topic has 30 replies, 9 voices, and was last updated 8 years, 7 months ago by
jamieth29.
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- October 1, 2015 at 10:32 pm
Cindy
I too am terrified and have been reading a lot of post and gone on a lot of websites trying to learn about all of the new dugs out there. Do I use the wait and see approach? Do I try some of the new drugs?
I was first diagnosed with Melanoma that appeared under my nail on my big toe back in 2013. It was originally diagnosed by my foot doctor as nail fungus ?!?! and went untreated that way for months. It was my dermatologist that did a biopsy that found the melanoma. I had my left gerat toe amputated and my Lumph Nodes checked and they all came back normal. Now 21/2 years later several uymph Nodes came back with Melanona and like others I am scared to death.
I have read that many people get second opinions, but I am going to the Cancer Treatment Center of America and I feel that I am in the right place. I don't know if I am Stage 3 or 4 and what Imune Therapy I should try, I am so confused and I just don't want to be sick.
I just don't like what this is doing to my family, my children are afraid that they won't have me around for their weddings or for my grandchildren.
I have an appointment next week, what questions do I need to ask my Oncologist to move forward.
I am so glad that there is a support group out there, I can use any and all support and guidance and I am glad you guys are out there.
Please help!!
- Replies
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- October 2, 2015 at 2:06 am
Cindy,
Sorry you are here.
It's good idea to write down a list of questions for your upcoming appointment.
No two ways about it. You are going to have some tough choices to make.
Other than their commercials, I'm not real familiar with Cancer Centers of America. If they don't have a melanoma specialist on staff I would highly recommend you get a second opinion at a cancer center of excellence who has a melanoma specialist on staff. If you post your location on here I'm sure there are members who can give you recommendations. Don't for one second feel like you are insulting your doctors by getting a second opinion. Most will be highly encouraging of that and if they aren't you don't want them as a doctor anyway.
It sounds like you are going to be staged at III and NED (no evidence of disease). NED is obviously a great place to be but can make it difficult to get treatment. As you mentioned interferon is an option. It is very controversial. I did it 4 years ago but don't think I would do it again today due the developments in just the last few years. In your situation I would definitely be looking at adjuvant trials. Any trial with Keytruda (pembroluzimab) or Opdivo (nivolumab) would be a good one.
You've come to a great place for support. Good luck with your appointment.
Brian
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- October 2, 2015 at 2:06 am
Cindy,
Sorry you are here.
It's good idea to write down a list of questions for your upcoming appointment.
No two ways about it. You are going to have some tough choices to make.
Other than their commercials, I'm not real familiar with Cancer Centers of America. If they don't have a melanoma specialist on staff I would highly recommend you get a second opinion at a cancer center of excellence who has a melanoma specialist on staff. If you post your location on here I'm sure there are members who can give you recommendations. Don't for one second feel like you are insulting your doctors by getting a second opinion. Most will be highly encouraging of that and if they aren't you don't want them as a doctor anyway.
It sounds like you are going to be staged at III and NED (no evidence of disease). NED is obviously a great place to be but can make it difficult to get treatment. As you mentioned interferon is an option. It is very controversial. I did it 4 years ago but don't think I would do it again today due the developments in just the last few years. In your situation I would definitely be looking at adjuvant trials. Any trial with Keytruda (pembroluzimab) or Opdivo (nivolumab) would be a good one.
You've come to a great place for support. Good luck with your appointment.
Brian
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- October 2, 2015 at 2:06 am
Cindy,
Sorry you are here.
It's good idea to write down a list of questions for your upcoming appointment.
No two ways about it. You are going to have some tough choices to make.
Other than their commercials, I'm not real familiar with Cancer Centers of America. If they don't have a melanoma specialist on staff I would highly recommend you get a second opinion at a cancer center of excellence who has a melanoma specialist on staff. If you post your location on here I'm sure there are members who can give you recommendations. Don't for one second feel like you are insulting your doctors by getting a second opinion. Most will be highly encouraging of that and if they aren't you don't want them as a doctor anyway.
It sounds like you are going to be staged at III and NED (no evidence of disease). NED is obviously a great place to be but can make it difficult to get treatment. As you mentioned interferon is an option. It is very controversial. I did it 4 years ago but don't think I would do it again today due the developments in just the last few years. In your situation I would definitely be looking at adjuvant trials. Any trial with Keytruda (pembroluzimab) or Opdivo (nivolumab) would be a good one.
You've come to a great place for support. Good luck with your appointment.
Brian
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- October 2, 2015 at 1:45 pm
Hi Cindy,
Sorry you had to join this board but it has a wealth of information.
I agree with Brian about the Melanoma Specialist as they are the most updated on melanoma trials and how to do with side effects.
You can also take a recorder (tape or tapeless) with you and we taped the entire office visit from the doctor, oncologist and sometimes the research nurse on up. We just asked may we tape this visit so we can relisten when we get home and clarify better and we were always told that was fine.
My husband chose the watch and wait over interferon as in his research he found it didn't have much benefit and he couldn't see being sick for a whole year he wanted quality over quantity.
Judy (loving wife of Gene Stage IV and now NED)
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- October 2, 2015 at 1:45 pm
Hi Cindy,
Sorry you had to join this board but it has a wealth of information.
I agree with Brian about the Melanoma Specialist as they are the most updated on melanoma trials and how to do with side effects.
You can also take a recorder (tape or tapeless) with you and we taped the entire office visit from the doctor, oncologist and sometimes the research nurse on up. We just asked may we tape this visit so we can relisten when we get home and clarify better and we were always told that was fine.
My husband chose the watch and wait over interferon as in his research he found it didn't have much benefit and he couldn't see being sick for a whole year he wanted quality over quantity.
Judy (loving wife of Gene Stage IV and now NED)
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- October 2, 2015 at 1:45 pm
Hi Cindy,
Sorry you had to join this board but it has a wealth of information.
I agree with Brian about the Melanoma Specialist as they are the most updated on melanoma trials and how to do with side effects.
You can also take a recorder (tape or tapeless) with you and we taped the entire office visit from the doctor, oncologist and sometimes the research nurse on up. We just asked may we tape this visit so we can relisten when we get home and clarify better and we were always told that was fine.
My husband chose the watch and wait over interferon as in his research he found it didn't have much benefit and he couldn't see being sick for a whole year he wanted quality over quantity.
Judy (loving wife of Gene Stage IV and now NED)
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- October 2, 2015 at 3:34 pm
Daisy – it is incredibly important to get a better understanding of your staging. There is a huge difference between Stage 3 and Stage 4 in terms of your treatment options. Even within Stage3 there is 3A, 3B, 3C…all of which have different options available (and associated risk factors).
Until you have a firm handle on that, it is really start to lay out the available treatment options.
Personally I am a 3A and doing Interferon…but if I was a 3B or 3C I would NOT. There are so many new options/trials that are not options for 3A that I would definitely consider. (but I am also grateful to be 3A)
Start with the staging and then this forum can help you with the many options that you can consider. And above all else make sure your oncologist is a melanoma expert. Don't get hung up on the brand of the facility…but make sure the doctor is doing this all day long…not just once a week/month.
Best wishes
Michel
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- October 2, 2015 at 3:34 pm
Daisy – it is incredibly important to get a better understanding of your staging. There is a huge difference between Stage 3 and Stage 4 in terms of your treatment options. Even within Stage3 there is 3A, 3B, 3C…all of which have different options available (and associated risk factors).
Until you have a firm handle on that, it is really start to lay out the available treatment options.
Personally I am a 3A and doing Interferon…but if I was a 3B or 3C I would NOT. There are so many new options/trials that are not options for 3A that I would definitely consider. (but I am also grateful to be 3A)
Start with the staging and then this forum can help you with the many options that you can consider. And above all else make sure your oncologist is a melanoma expert. Don't get hung up on the brand of the facility…but make sure the doctor is doing this all day long…not just once a week/month.
Best wishes
Michel
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- October 2, 2015 at 3:34 pm
Daisy – it is incredibly important to get a better understanding of your staging. There is a huge difference between Stage 3 and Stage 4 in terms of your treatment options. Even within Stage3 there is 3A, 3B, 3C…all of which have different options available (and associated risk factors).
Until you have a firm handle on that, it is really start to lay out the available treatment options.
Personally I am a 3A and doing Interferon…but if I was a 3B or 3C I would NOT. There are so many new options/trials that are not options for 3A that I would definitely consider. (but I am also grateful to be 3A)
Start with the staging and then this forum can help you with the many options that you can consider. And above all else make sure your oncologist is a melanoma expert. Don't get hung up on the brand of the facility…but make sure the doctor is doing this all day long…not just once a week/month.
Best wishes
Michel
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- October 2, 2015 at 6:03 pm
Daisy,
Jusy wanted to share my experience with cancer treatment centers. I had my clnd dissection at the zion hospital. The nurses were excellent there but when my path report came back 3c i was told that interferon was my only option. I did ask about yervoy and was told i 100% couldn’t get it. I was also told if i was looking for a clinical trial that was something i needed to do on my own and they wouldn’t even help steer me in the right direction. My oncologist at home that is not a melanoma specialist said he would at least apply to the insurance for yervoy as it is not approved for stage 3 and see what happens. The insurance did approve yervoy so i was amazed ctca wouldn’t even try. Also after i told them i was going to explore clinical trials i had a hard time getting the surgeon to even return my calls with questions i had. I’m not saying that is going to happen to you just going over my experience there. It wasn’t until i saw a doctor that specializes in melanoma that i could see the huge difference in information and knowledge. Just understand ctca can not wave a magic wand and cure you. They have the same treatments any other hospital has. After looking back they use a lot of things to kind of wow you i guess is the best way to put it. In the end it comes down to being with a knowledgeable Dr that will be able to help. I do think the Arizona hospital might have a dedicated mel Dr. Hope some of this might help.Jamie
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- October 2, 2015 at 6:03 pm
Daisy,
Jusy wanted to share my experience with cancer treatment centers. I had my clnd dissection at the zion hospital. The nurses were excellent there but when my path report came back 3c i was told that interferon was my only option. I did ask about yervoy and was told i 100% couldn’t get it. I was also told if i was looking for a clinical trial that was something i needed to do on my own and they wouldn’t even help steer me in the right direction. My oncologist at home that is not a melanoma specialist said he would at least apply to the insurance for yervoy as it is not approved for stage 3 and see what happens. The insurance did approve yervoy so i was amazed ctca wouldn’t even try. Also after i told them i was going to explore clinical trials i had a hard time getting the surgeon to even return my calls with questions i had. I’m not saying that is going to happen to you just going over my experience there. It wasn’t until i saw a doctor that specializes in melanoma that i could see the huge difference in information and knowledge. Just understand ctca can not wave a magic wand and cure you. They have the same treatments any other hospital has. After looking back they use a lot of things to kind of wow you i guess is the best way to put it. In the end it comes down to being with a knowledgeable Dr that will be able to help. I do think the Arizona hospital might have a dedicated mel Dr. Hope some of this might help.Jamie
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- October 2, 2015 at 6:03 pm
Daisy,
Jusy wanted to share my experience with cancer treatment centers. I had my clnd dissection at the zion hospital. The nurses were excellent there but when my path report came back 3c i was told that interferon was my only option. I did ask about yervoy and was told i 100% couldn’t get it. I was also told if i was looking for a clinical trial that was something i needed to do on my own and they wouldn’t even help steer me in the right direction. My oncologist at home that is not a melanoma specialist said he would at least apply to the insurance for yervoy as it is not approved for stage 3 and see what happens. The insurance did approve yervoy so i was amazed ctca wouldn’t even try. Also after i told them i was going to explore clinical trials i had a hard time getting the surgeon to even return my calls with questions i had. I’m not saying that is going to happen to you just going over my experience there. It wasn’t until i saw a doctor that specializes in melanoma that i could see the huge difference in information and knowledge. Just understand ctca can not wave a magic wand and cure you. They have the same treatments any other hospital has. After looking back they use a lot of things to kind of wow you i guess is the best way to put it. In the end it comes down to being with a knowledgeable Dr that will be able to help. I do think the Arizona hospital might have a dedicated mel Dr. Hope some of this might help.Jamie
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- October 5, 2015 at 2:28 pm
Hi Cindy,
You have been given some excellent advice regarding seeking a melanoma specialist. It would be worth your while to seek an opinion from one. The world of treatment options for melanoma is evolving so quickly that it is not likely a place like CTCA would have the dedicated resources to keep up with it.
Interferon statistics are abysmal in that if you are destined to have a recurrence, it will only delay that by about a year. It only increases the chance of it never coming back by 5% and in the meantime you will be dealing with some pretty harsh side effects for a year. Now, given that, folks who have completed the regimen have had no regrets. Others never finished treatment due to side effects and some have had a recurrence during treatment. Whether or not to do interferon is a personal choice.
Unfortunately, the only FDA approved option for resectable Stage 3 melanoma is interferon. But it is possible you may qualify for a trial where they are testing Stage 4 drugs on those folks with Stage 3. Best place to find out is at a facility with a department dedicated to melanoma.
If you are going to the CTCA near Philadelphia, you might want to consider contacting the Pigmented Lesion Clinic at Abramson Cancer Center for a second opinion. It is part of the University of Pennsylvania.
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- October 5, 2015 at 2:28 pm
Hi Cindy,
You have been given some excellent advice regarding seeking a melanoma specialist. It would be worth your while to seek an opinion from one. The world of treatment options for melanoma is evolving so quickly that it is not likely a place like CTCA would have the dedicated resources to keep up with it.
Interferon statistics are abysmal in that if you are destined to have a recurrence, it will only delay that by about a year. It only increases the chance of it never coming back by 5% and in the meantime you will be dealing with some pretty harsh side effects for a year. Now, given that, folks who have completed the regimen have had no regrets. Others never finished treatment due to side effects and some have had a recurrence during treatment. Whether or not to do interferon is a personal choice.
Unfortunately, the only FDA approved option for resectable Stage 3 melanoma is interferon. But it is possible you may qualify for a trial where they are testing Stage 4 drugs on those folks with Stage 3. Best place to find out is at a facility with a department dedicated to melanoma.
If you are going to the CTCA near Philadelphia, you might want to consider contacting the Pigmented Lesion Clinic at Abramson Cancer Center for a second opinion. It is part of the University of Pennsylvania.
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- October 6, 2015 at 4:37 am
There are 69 NCI-designated cancer centers, which would be a great starting point. All of those facilities should be good bet as places to go as long as they have melanoma programs/centers/clinics.
On the other hand, the cancer center I'm going for treatment right now is not one of those NCI-designated 69. It's a great place, in large part because they have a couple of well known melanoma oncologists. They do a lot of phase I clinical trials, as well as a lot of their own research. Those are all attractive characteristics for me, NCI-designated or otherwise.
Whether I'd want to go to CTCA is another matter. I know very little about CTCA, but for whatever reason they've never shown up on my radar for melanoma treatment.
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- October 6, 2015 at 4:37 am
There are 69 NCI-designated cancer centers, which would be a great starting point. All of those facilities should be good bet as places to go as long as they have melanoma programs/centers/clinics.
On the other hand, the cancer center I'm going for treatment right now is not one of those NCI-designated 69. It's a great place, in large part because they have a couple of well known melanoma oncologists. They do a lot of phase I clinical trials, as well as a lot of their own research. Those are all attractive characteristics for me, NCI-designated or otherwise.
Whether I'd want to go to CTCA is another matter. I know very little about CTCA, but for whatever reason they've never shown up on my radar for melanoma treatment.
-
- October 6, 2015 at 4:37 am
There are 69 NCI-designated cancer centers, which would be a great starting point. All of those facilities should be good bet as places to go as long as they have melanoma programs/centers/clinics.
On the other hand, the cancer center I'm going for treatment right now is not one of those NCI-designated 69. It's a great place, in large part because they have a couple of well known melanoma oncologists. They do a lot of phase I clinical trials, as well as a lot of their own research. Those are all attractive characteristics for me, NCI-designated or otherwise.
Whether I'd want to go to CTCA is another matter. I know very little about CTCA, but for whatever reason they've never shown up on my radar for melanoma treatment.
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- October 6, 2015 at 12:02 pm
Thank you so much for your great response and advice. I am going to make an appointment with an approved National Cancer Institute today for my Second Opinion.
My Doctor recommended a Doctor at the University of Chicago who specializes in Melanoma and he has done a lot of breakthrough studies and also does clinical trials. It seems that this is the right path definitely worth a visit.
Thanks again this forum is a wealth of information and so great that it is out there!!!
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- October 6, 2015 at 12:02 pm
Thank you so much for your great response and advice. I am going to make an appointment with an approved National Cancer Institute today for my Second Opinion.
My Doctor recommended a Doctor at the University of Chicago who specializes in Melanoma and he has done a lot of breakthrough studies and also does clinical trials. It seems that this is the right path definitely worth a visit.
Thanks again this forum is a wealth of information and so great that it is out there!!!
-
- October 6, 2015 at 12:02 pm
Thank you so much for your great response and advice. I am going to make an appointment with an approved National Cancer Institute today for my Second Opinion.
My Doctor recommended a Doctor at the University of Chicago who specializes in Melanoma and he has done a lot of breakthrough studies and also does clinical trials. It seems that this is the right path definitely worth a visit.
Thanks again this forum is a wealth of information and so great that it is out there!!!
-
- October 5, 2015 at 2:28 pm
Hi Cindy,
You have been given some excellent advice regarding seeking a melanoma specialist. It would be worth your while to seek an opinion from one. The world of treatment options for melanoma is evolving so quickly that it is not likely a place like CTCA would have the dedicated resources to keep up with it.
Interferon statistics are abysmal in that if you are destined to have a recurrence, it will only delay that by about a year. It only increases the chance of it never coming back by 5% and in the meantime you will be dealing with some pretty harsh side effects for a year. Now, given that, folks who have completed the regimen have had no regrets. Others never finished treatment due to side effects and some have had a recurrence during treatment. Whether or not to do interferon is a personal choice.
Unfortunately, the only FDA approved option for resectable Stage 3 melanoma is interferon. But it is possible you may qualify for a trial where they are testing Stage 4 drugs on those folks with Stage 3. Best place to find out is at a facility with a department dedicated to melanoma.
If you are going to the CTCA near Philadelphia, you might want to consider contacting the Pigmented Lesion Clinic at Abramson Cancer Center for a second opinion. It is part of the University of Pennsylvania.
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