› Forums › General Melanoma Community › First Post: Stage 3 and entering full node removal
- This topic has 30 replies, 9 voices, and was last updated 9 years, 7 months ago by
mjanssentx.
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- November 5, 2015 at 6:48 am
My name is John (age 41) and I was diagnosed recently in Sept 2015. I'm in Stage III as my SNBs came back positive in the nodes under my right arm and neck, and I'm scheduled to have remaining nodes removed in those areas next week. The PET/CT scan didn't reveal anything other than the inflamation from the removal of the sentinal lymph nodes.
I've been to a couple of oncologist locall, Dr. Nanda (at SOIN) and Dr. Jeter (OSU), and everyone tells me full node removal in these areas is the next step. I realize this full node removal is the "industry standard" as we try to get out in front of this, but I'm really having a tough time with it and the visible scars that will come with removal in the neck area. I think I've handled the initial diagnosis and everything since better than I'm handling the idea of a scar running the full length of my neck.
Does anyone have a contact for a melanoma specialist in the Dayton/Columbus (OH) area? Would I benefit from any of the new medications released? Do all clinicals and newer drugs require full node removal? Is anyone familiar with the Infusio Concept (http://en.infusio.org)?
While at this point I'll probably move forward with the full node removal, especially since I was given positive results in 2 areas and all 3 of the nodes that were initially removed, I'm trying to get my next steps in order and decide which route to take…interferon, clinicals or other alternatives.
It seems most doctors I've spoken with don't have much conviction in interferon treatments. I understand that is why clinicals are taking place…to find something more effective (hopefully with less side effects). I was told interferon is only effective in 40%, but that seems better than going with an unknown clinical, where there are limited results to determine effectiveness. However, interferon seems a pretty daunting process with it's side effects too.
I appreciate the thoughts and testimonies here.
John
- Replies
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- November 5, 2015 at 7:33 am
Hi John
I'm sorry to hear about your situation.
In my view, CLND is still the gold standard, but over time it will be reduced or not done at all, as evidence is starting to build like this:
http://www.medpagetoday.com/MeetingCoverage/ASCO/51860
Right now, though, it would definitely be recommended in Australia. In 10 years time – I'm not so sure. It will go the way of the 10cm wide excisions and other over-done surgical stuff. But for now, what choice do we have but go with the gold standard? I really, absolutely relate to your concerns about scarring, too.
There have been new approvals for adjuvant stage 3 therarpies… I'm sure someone from this forum/site posted a great overview of these for stage 3 patients some time in the last fortnight. It's all very new so please do find that post and read up on your options – your doctors may not even be aware of these yet, and whoever posted it did a good job breaking it down for lay people.
Stars
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- November 5, 2015 at 7:33 am
Hi John
I'm sorry to hear about your situation.
In my view, CLND is still the gold standard, but over time it will be reduced or not done at all, as evidence is starting to build like this:
http://www.medpagetoday.com/MeetingCoverage/ASCO/51860
Right now, though, it would definitely be recommended in Australia. In 10 years time – I'm not so sure. It will go the way of the 10cm wide excisions and other over-done surgical stuff. But for now, what choice do we have but go with the gold standard? I really, absolutely relate to your concerns about scarring, too.
There have been new approvals for adjuvant stage 3 therarpies… I'm sure someone from this forum/site posted a great overview of these for stage 3 patients some time in the last fortnight. It's all very new so please do find that post and read up on your options – your doctors may not even be aware of these yet, and whoever posted it did a good job breaking it down for lay people.
Stars
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- November 5, 2015 at 7:33 am
Hi John
I'm sorry to hear about your situation.
In my view, CLND is still the gold standard, but over time it will be reduced or not done at all, as evidence is starting to build like this:
http://www.medpagetoday.com/MeetingCoverage/ASCO/51860
Right now, though, it would definitely be recommended in Australia. In 10 years time – I'm not so sure. It will go the way of the 10cm wide excisions and other over-done surgical stuff. But for now, what choice do we have but go with the gold standard? I really, absolutely relate to your concerns about scarring, too.
There have been new approvals for adjuvant stage 3 therarpies… I'm sure someone from this forum/site posted a great overview of these for stage 3 patients some time in the last fortnight. It's all very new so please do find that post and read up on your options – your doctors may not even be aware of these yet, and whoever posted it did a good job breaking it down for lay people.
Stars
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- November 5, 2015 at 11:38 am
Hi John, I had the neck CLND ten years ago when it was the standard of care so I can't help you on that decision. But I can help with the neck scar. A skilled surgeon will make the incision in the natural fold of your neck. Mine was hardly noticeable after the stitches came out and faded even more over time. You could mention your concerns to the surgeon so he/she is aware of them, but try not to worry overmuch. I know, I know, easy for me to say.
Sending good thoughts for the upcoming surgery. Fen
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- November 5, 2015 at 11:38 am
Hi John, I had the neck CLND ten years ago when it was the standard of care so I can't help you on that decision. But I can help with the neck scar. A skilled surgeon will make the incision in the natural fold of your neck. Mine was hardly noticeable after the stitches came out and faded even more over time. You could mention your concerns to the surgeon so he/she is aware of them, but try not to worry overmuch. I know, I know, easy for me to say.
Sending good thoughts for the upcoming surgery. Fen
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- November 5, 2015 at 11:38 am
Hi John, I had the neck CLND ten years ago when it was the standard of care so I can't help you on that decision. But I can help with the neck scar. A skilled surgeon will make the incision in the natural fold of your neck. Mine was hardly noticeable after the stitches came out and faded even more over time. You could mention your concerns to the surgeon so he/she is aware of them, but try not to worry overmuch. I know, I know, easy for me to say.
Sending good thoughts for the upcoming surgery. Fen
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- November 5, 2015 at 1:46 pm
Hi John, welcome to the board! The interferon question comes up often and is usually one that people have strong feelings about. I would get as much data about the drug and side effects before starting and the 40% effective is way off. Find the medical studies on interferon and if my memory is right the number is more like 3 to 5 % chance that it will be beneficial. I am sure some one will give you a link to the data on the drug! Finding a Melanoma specialist is the best way to go since there is a lot going on as far as new drugs and trials for stage 3 patients. Wishing you the best!!! Ed
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- November 5, 2015 at 1:46 pm
Hi John, welcome to the board! The interferon question comes up often and is usually one that people have strong feelings about. I would get as much data about the drug and side effects before starting and the 40% effective is way off. Find the medical studies on interferon and if my memory is right the number is more like 3 to 5 % chance that it will be beneficial. I am sure some one will give you a link to the data on the drug! Finding a Melanoma specialist is the best way to go since there is a lot going on as far as new drugs and trials for stage 3 patients. Wishing you the best!!! Ed
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- November 5, 2015 at 1:46 pm
Hi John, welcome to the board! The interferon question comes up often and is usually one that people have strong feelings about. I would get as much data about the drug and side effects before starting and the 40% effective is way off. Find the medical studies on interferon and if my memory is right the number is more like 3 to 5 % chance that it will be beneficial. I am sure some one will give you a link to the data on the drug! Finding a Melanoma specialist is the best way to go since there is a lot going on as far as new drugs and trials for stage 3 patients. Wishing you the best!!! Ed
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- November 5, 2015 at 2:32 pm
Hi John, glad to hear your PET /CT were clear! That's great news!
I too can help with the scar anxiety as my husband (he's 39) just had this surgery in May. His scars have healed nicely and his surgeon followed the natural fold of his neck. The clinical trial he is participating in did require the modified radical neck dissection as a prereq for randomization. He is stage 3b and is part of the IPI v Nivo trial at Texas Oncology.
Best of luck to you!
~Kristi
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- November 5, 2015 at 2:32 pm
Hi John, glad to hear your PET /CT were clear! That's great news!
I too can help with the scar anxiety as my husband (he's 39) just had this surgery in May. His scars have healed nicely and his surgeon followed the natural fold of his neck. The clinical trial he is participating in did require the modified radical neck dissection as a prereq for randomization. He is stage 3b and is part of the IPI v Nivo trial at Texas Oncology.
Best of luck to you!
~Kristi
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- November 5, 2015 at 2:32 pm
Hi John, glad to hear your PET /CT were clear! That's great news!
I too can help with the scar anxiety as my husband (he's 39) just had this surgery in May. His scars have healed nicely and his surgeon followed the natural fold of his neck. The clinical trial he is participating in did require the modified radical neck dissection as a prereq for randomization. He is stage 3b and is part of the IPI v Nivo trial at Texas Oncology.
Best of luck to you!
~Kristi
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- November 5, 2015 at 3:13 pm
I just want to echo the above sentiments. I was 29 when diagnosed, and definitely concerned about the large scars. Dr's can do amazing things with scars these days. A skilled surgeon can achieve amazing results. A few things to remember…. 1. your scar will look amazingly better 1 year out than is does right after your surgery, and will continue to look better as time goes on, so try not to freak if it doesn't look that great on day 1. 2. Dr's can do revision surgeries to improve the appearance of bad scars. I had a bump (pucker) sticking out of my arm after my WLE that I hated… my surgeon revised a year out, and looks amazing now. 3. Use vitamin E oil, or other scar lotions/creams, and massage the scar once you are cleared to do so, it really helps. 4. Finally, I promise… it may be jarring at first, but over time, it really wont bother you that much. My mental state regarding my scars is so different now than 2 years ago, it's quite amazing. Also, I think scars tend to be one of those things that are really noticeable to the person that has the scar, but many times, others don't even notice!! Also, when you think about what you gain by doing the surgery (peace of mind, possible removal of disease), it's totally worth having a few scars. Good luck!!! 🙂
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- November 5, 2015 at 3:13 pm
I just want to echo the above sentiments. I was 29 when diagnosed, and definitely concerned about the large scars. Dr's can do amazing things with scars these days. A skilled surgeon can achieve amazing results. A few things to remember…. 1. your scar will look amazingly better 1 year out than is does right after your surgery, and will continue to look better as time goes on, so try not to freak if it doesn't look that great on day 1. 2. Dr's can do revision surgeries to improve the appearance of bad scars. I had a bump (pucker) sticking out of my arm after my WLE that I hated… my surgeon revised a year out, and looks amazing now. 3. Use vitamin E oil, or other scar lotions/creams, and massage the scar once you are cleared to do so, it really helps. 4. Finally, I promise… it may be jarring at first, but over time, it really wont bother you that much. My mental state regarding my scars is so different now than 2 years ago, it's quite amazing. Also, I think scars tend to be one of those things that are really noticeable to the person that has the scar, but many times, others don't even notice!! Also, when you think about what you gain by doing the surgery (peace of mind, possible removal of disease), it's totally worth having a few scars. Good luck!!! 🙂
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- November 5, 2015 at 3:13 pm
I just want to echo the above sentiments. I was 29 when diagnosed, and definitely concerned about the large scars. Dr's can do amazing things with scars these days. A skilled surgeon can achieve amazing results. A few things to remember…. 1. your scar will look amazingly better 1 year out than is does right after your surgery, and will continue to look better as time goes on, so try not to freak if it doesn't look that great on day 1. 2. Dr's can do revision surgeries to improve the appearance of bad scars. I had a bump (pucker) sticking out of my arm after my WLE that I hated… my surgeon revised a year out, and looks amazing now. 3. Use vitamin E oil, or other scar lotions/creams, and massage the scar once you are cleared to do so, it really helps. 4. Finally, I promise… it may be jarring at first, but over time, it really wont bother you that much. My mental state regarding my scars is so different now than 2 years ago, it's quite amazing. Also, I think scars tend to be one of those things that are really noticeable to the person that has the scar, but many times, others don't even notice!! Also, when you think about what you gain by doing the surgery (peace of mind, possible removal of disease), it's totally worth having a few scars. Good luck!!! 🙂
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- November 5, 2015 at 4:38 pm
Hi John!
I would get to the James ASAP and see Dr. Agnese (melanoma specialist surgical oncologists) and Dr. Olenki (melanoma specialist medical onclology). I have first hand experience dealing with both of them! Dr. Agnese is very sweet and nice and Dr. Olenki is a strait foward no BS guy. Both very good!
Wishing you all the best
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- November 5, 2015 at 4:38 pm
Hi John!
I would get to the James ASAP and see Dr. Agnese (melanoma specialist surgical oncologists) and Dr. Olenki (melanoma specialist medical onclology). I have first hand experience dealing with both of them! Dr. Agnese is very sweet and nice and Dr. Olenki is a strait foward no BS guy. Both very good!
Wishing you all the best
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- November 6, 2015 at 1:00 am
The James is where I saw Dr. Jeter and while she's relatively new to the James, I think she may actually work along side Dr. Olencki. She was my second opinion and encourage the node removal, but also give me info on an upcoming clinical, which I may go back and sign up for. Still trying to determine the next steps for me though and I'd really prefer not to do Interferon, especially if effective rate are as low as 3-5%…no thank you. I realize however that I may get placed in the Interferon Camp in some of the these clinicals, so if that is the case, I'd have to make a decision at that point of whether to continue or not.
Thanks for the information.
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- November 6, 2015 at 1:00 am
The James is where I saw Dr. Jeter and while she's relatively new to the James, I think she may actually work along side Dr. Olencki. She was my second opinion and encourage the node removal, but also give me info on an upcoming clinical, which I may go back and sign up for. Still trying to determine the next steps for me though and I'd really prefer not to do Interferon, especially if effective rate are as low as 3-5%…no thank you. I realize however that I may get placed in the Interferon Camp in some of the these clinicals, so if that is the case, I'd have to make a decision at that point of whether to continue or not.
Thanks for the information.
-
- November 6, 2015 at 1:00 am
The James is where I saw Dr. Jeter and while she's relatively new to the James, I think she may actually work along side Dr. Olencki. She was my second opinion and encourage the node removal, but also give me info on an upcoming clinical, which I may go back and sign up for. Still trying to determine the next steps for me though and I'd really prefer not to do Interferon, especially if effective rate are as low as 3-5%…no thank you. I realize however that I may get placed in the Interferon Camp in some of the these clinicals, so if that is the case, I'd have to make a decision at that point of whether to continue or not.
Thanks for the information.
-
- November 5, 2015 at 4:38 pm
Hi John!
I would get to the James ASAP and see Dr. Agnese (melanoma specialist surgical oncologists) and Dr. Olenki (melanoma specialist medical onclology). I have first hand experience dealing with both of them! Dr. Agnese is very sweet and nice and Dr. Olenki is a strait foward no BS guy. Both very good!
Wishing you all the best
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- November 5, 2015 at 6:57 pm
Hi John,
First of all, I'm sorry you were here. However, welcome. I cannot help you to find a melanoma specialist; however, do not be afraid to travel outside of your area. I know it can be difficult but it is so worth it. Mayo Clinic in Rochester Minnesota was the closest to me. However, I never felt right in their care. I had an NP completely in charge of my case and she was not a melanoma specialist. I know it's the first thing everyone on this board says, but it's the best advice I have received. Find a specialist!
Next, I was first stage I, and then I was stage III, and unfortunately now I am stage IV. I did have an SLB on my groin when I was stage III. The scar is actually not as bad as where I had my first mole removed with a skin graft. However, the SLB was very painful and much more in depth than I had thought it would have been. No one warned me of that so I'm just putting it out there for you. I don't know how it is for the location you'd have it on, but it was very painful in my groin.
Whether or not you choose to have these nodes removed, I would look at the new adjuvant therapy. Your void me be a great option for you. Best of luck!
Ashley
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- November 5, 2015 at 6:57 pm
Hi John,
First of all, I'm sorry you were here. However, welcome. I cannot help you to find a melanoma specialist; however, do not be afraid to travel outside of your area. I know it can be difficult but it is so worth it. Mayo Clinic in Rochester Minnesota was the closest to me. However, I never felt right in their care. I had an NP completely in charge of my case and she was not a melanoma specialist. I know it's the first thing everyone on this board says, but it's the best advice I have received. Find a specialist!
Next, I was first stage I, and then I was stage III, and unfortunately now I am stage IV. I did have an SLB on my groin when I was stage III. The scar is actually not as bad as where I had my first mole removed with a skin graft. However, the SLB was very painful and much more in depth than I had thought it would have been. No one warned me of that so I'm just putting it out there for you. I don't know how it is for the location you'd have it on, but it was very painful in my groin.
Whether or not you choose to have these nodes removed, I would look at the new adjuvant therapy. Your void me be a great option for you. Best of luck!
Ashley
-
- November 5, 2015 at 6:57 pm
Hi John,
First of all, I'm sorry you were here. However, welcome. I cannot help you to find a melanoma specialist; however, do not be afraid to travel outside of your area. I know it can be difficult but it is so worth it. Mayo Clinic in Rochester Minnesota was the closest to me. However, I never felt right in their care. I had an NP completely in charge of my case and she was not a melanoma specialist. I know it's the first thing everyone on this board says, but it's the best advice I have received. Find a specialist!
Next, I was first stage I, and then I was stage III, and unfortunately now I am stage IV. I did have an SLB on my groin when I was stage III. The scar is actually not as bad as where I had my first mole removed with a skin graft. However, the SLB was very painful and much more in depth than I had thought it would have been. No one warned me of that so I'm just putting it out there for you. I don't know how it is for the location you'd have it on, but it was very painful in my groin.
Whether or not you choose to have these nodes removed, I would look at the new adjuvant therapy. Your void me be a great option for you. Best of luck!
Ashley
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- November 6, 2015 at 3:04 am
John – another stage 3A here…just past my 1 year anniversary. A couple of thoughts for you to consider.
Don't worry about the scars….worry about living – the scars have mostly healed from the surgeries but the pain from the full node removal is different but still there. And I could care less about what that 6 inch scar looks like to be honest
You didn't mention what your full staging was 3A versus 3B….those two are a = completely different game in the treatment options. Up until last week there was only a couple of real options for 3A…Interferon (which is what I am doing) or watch and wait (or some experimental vaccines). Last week, the FDA approved Ipi (Yervoy) for the adjunctive Stage 3 patients. But it was done for a very high dosing (much higher than Stage 4 patients)…so the jury is still out on that most recent option. (the issue is the very high number of side effects…including deaths from that protocol)
If you are a 3B/3C…then there are several clinical trial options that are open right now that I would suggest you consider.
The side effects of Interferon are many….but also most are doable…and reversible after a week or so. (I know I just took a 2.5 week vacation from the drug and I never felt better in my life)
Good luck…you are in the right spot for real life support and information. The most important advise is to find a real melanoma specialist…not just an oncologist….but somebody that sees melanoma patients all day, every day.
Michel
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- November 6, 2015 at 3:04 am
John – another stage 3A here…just past my 1 year anniversary. A couple of thoughts for you to consider.
Don't worry about the scars….worry about living – the scars have mostly healed from the surgeries but the pain from the full node removal is different but still there. And I could care less about what that 6 inch scar looks like to be honest
You didn't mention what your full staging was 3A versus 3B….those two are a = completely different game in the treatment options. Up until last week there was only a couple of real options for 3A…Interferon (which is what I am doing) or watch and wait (or some experimental vaccines). Last week, the FDA approved Ipi (Yervoy) for the adjunctive Stage 3 patients. But it was done for a very high dosing (much higher than Stage 4 patients)…so the jury is still out on that most recent option. (the issue is the very high number of side effects…including deaths from that protocol)
If you are a 3B/3C…then there are several clinical trial options that are open right now that I would suggest you consider.
The side effects of Interferon are many….but also most are doable…and reversible after a week or so. (I know I just took a 2.5 week vacation from the drug and I never felt better in my life)
Good luck…you are in the right spot for real life support and information. The most important advise is to find a real melanoma specialist…not just an oncologist….but somebody that sees melanoma patients all day, every day.
Michel
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- November 6, 2015 at 3:04 am
John – another stage 3A here…just past my 1 year anniversary. A couple of thoughts for you to consider.
Don't worry about the scars….worry about living – the scars have mostly healed from the surgeries but the pain from the full node removal is different but still there. And I could care less about what that 6 inch scar looks like to be honest
You didn't mention what your full staging was 3A versus 3B….those two are a = completely different game in the treatment options. Up until last week there was only a couple of real options for 3A…Interferon (which is what I am doing) or watch and wait (or some experimental vaccines). Last week, the FDA approved Ipi (Yervoy) for the adjunctive Stage 3 patients. But it was done for a very high dosing (much higher than Stage 4 patients)…so the jury is still out on that most recent option. (the issue is the very high number of side effects…including deaths from that protocol)
If you are a 3B/3C…then there are several clinical trial options that are open right now that I would suggest you consider.
The side effects of Interferon are many….but also most are doable…and reversible after a week or so. (I know I just took a 2.5 week vacation from the drug and I never felt better in my life)
Good luck…you are in the right spot for real life support and information. The most important advise is to find a real melanoma specialist…not just an oncologist….but somebody that sees melanoma patients all day, every day.
Michel
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