› Forums › General Melanoma Community › Distant recurrence
- This topic has 18 replies, 4 voices, and was last updated 11 years, 11 months ago by
Tina D.
- Post
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- May 11, 2014 at 12:55 pm
Hello all
Sadly after 13 yrs melanoma returned. My primary was on my face and the new tumor was removed from my hip.
Both times all scans came back clean and did not spread at the time. After getting the a-ok from the scans this time, I have been acting like I had Stage II in 2001 because the tumor this time was localized. Then I spoke to a doctor friend who gave me a reality check about the scariness of distant recurrence.
Is there anyone out there that is facing something similar with distant recurrence and any advice. I'm going to visit a few specialists.
I had Stage II at 24 and now Stage IV at 37 and I have a beautiful 2 year old that I want to see grow up.
-Erin
- Replies
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- May 11, 2014 at 8:00 pm
I'm a little confused as to where the recurrence was: was it in your hip bone or another mole on the skin? Or, was it in a lymph node in your groin near your hip? Your post wasn't very clear on that.
Confusion aside, much has changed since you were first diagnosed, especially within the past 2-3 years. Tumors are now tested for mutations and treatments that target these mutations are definitely kicking melanoma's butt for some people. Thirteen years ago there just weren't many options. Now there are multiple options and the list is growing larger.
Aside from the tumor testing for mutations, lymph nodes are tested with something called a sentinel lymph node biopsy to see if cancer cells are present.
These days you definitely want to seek out a facility that specializes in melanoma. These places will have been better able to keep up with the pace of treatment developments than a generic cancer facility would have been able to.
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- May 12, 2014 at 6:47 pm
Thank you for responding. I found a lump on the outside of my hip. It wasn't on the bone though it was encapsulated which is lucky because it was a large 4mm mass.
I tested negative for Braf. I made some appts with specialists, I was just wondering what to expect in terms of treatment. It's hard to be a cancer patient and have patience, right?
take care!
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- May 12, 2014 at 6:47 pm
Thank you for responding. I found a lump on the outside of my hip. It wasn't on the bone though it was encapsulated which is lucky because it was a large 4mm mass.
I tested negative for Braf. I made some appts with specialists, I was just wondering what to expect in terms of treatment. It's hard to be a cancer patient and have patience, right?
take care!
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- May 12, 2014 at 6:47 pm
Thank you for responding. I found a lump on the outside of my hip. It wasn't on the bone though it was encapsulated which is lucky because it was a large 4mm mass.
I tested negative for Braf. I made some appts with specialists, I was just wondering what to expect in terms of treatment. It's hard to be a cancer patient and have patience, right?
take care!
-
- May 11, 2014 at 8:00 pm
I'm a little confused as to where the recurrence was: was it in your hip bone or another mole on the skin? Or, was it in a lymph node in your groin near your hip? Your post wasn't very clear on that.
Confusion aside, much has changed since you were first diagnosed, especially within the past 2-3 years. Tumors are now tested for mutations and treatments that target these mutations are definitely kicking melanoma's butt for some people. Thirteen years ago there just weren't many options. Now there are multiple options and the list is growing larger.
Aside from the tumor testing for mutations, lymph nodes are tested with something called a sentinel lymph node biopsy to see if cancer cells are present.
These days you definitely want to seek out a facility that specializes in melanoma. These places will have been better able to keep up with the pace of treatment developments than a generic cancer facility would have been able to.
-
- May 11, 2014 at 8:00 pm
I'm a little confused as to where the recurrence was: was it in your hip bone or another mole on the skin? Or, was it in a lymph node in your groin near your hip? Your post wasn't very clear on that.
Confusion aside, much has changed since you were first diagnosed, especially within the past 2-3 years. Tumors are now tested for mutations and treatments that target these mutations are definitely kicking melanoma's butt for some people. Thirteen years ago there just weren't many options. Now there are multiple options and the list is growing larger.
Aside from the tumor testing for mutations, lymph nodes are tested with something called a sentinel lymph node biopsy to see if cancer cells are present.
These days you definitely want to seek out a facility that specializes in melanoma. These places will have been better able to keep up with the pace of treatment developments than a generic cancer facility would have been able to.
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- May 12, 2014 at 12:45 pm
It is a scary diagnosis to hear, and I am sorry you have had this recurrence. I was 37 when first diagnosed, and had a distant recurrence 3 years later. So, just as an encouragement, that was back in 2005 🙂 . On this day, thank God, I am doing great and responding well in a clinical trial for Anti Pd1 through Merck. Just wanting to encourage you today because I know your head is spinning. Not a one of us here cannot relate to that feeling. Take a deep breath. And, yes, by ALL means, get to a melanoma specialist .. it is a quickly changing landscape of treatment options and you need someone who specializes and can keep up with it all.
Tina
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- May 12, 2014 at 6:43 pm
Hi Tina
thank you for responding to me and I wish you good health! Can you help answer some questions about the clinical trial?
For pd-1 does it depend on your BRAF mutation? I tested negative. I also heard good things about Yervoy. Lastly are there multiple hospitals that are doing the clinical trial? I'm curious if I would have to travel to take part.
After your recurrence what did they put you on aside from the trial?
Thanks 🙂
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- May 12, 2014 at 6:43 pm
Hi Tina
thank you for responding to me and I wish you good health! Can you help answer some questions about the clinical trial?
For pd-1 does it depend on your BRAF mutation? I tested negative. I also heard good things about Yervoy. Lastly are there multiple hospitals that are doing the clinical trial? I'm curious if I would have to travel to take part.
After your recurrence what did they put you on aside from the trial?
Thanks 🙂
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- May 13, 2014 at 12:27 pm
I am jsut reading these responses, and Brian brings a good point. If you are now NED, you will have to see what reatments you can get in for, and it looks like he may have some good leads for you.
As for treatments since recurrence… I was fortunate to have single, resectable recurrences for a number of years and so I had numerous surgeries ( every year or so) . At one point after a surgery when the recurrences were coming more frequently, I did 6 months of interferon. Also somewhere along the way I was treated with GM-CSF ( to try to ramp up my immune system for the fight). In 2012, my disease had progressed beyone what could be removed by surgery, and at that point I started on Zelboraf because I was BRAF positive. Initial response was amazing, then I recurred by the end of the year. At that point I went on Yervoy and had an initial response, then progression once again. I started the PD1 trial in July last year. As far as I know the BRAF status only matters when taking a drug specifically for the BRAF mutation ( such as Zelboraf)
Are you seeing a melanoma specialist?
Also.. I definitely recommend you using the resources of folks on here. Had it not been for a dear friend telling me about a trial availability for me, I am not sure I would have found it, and even my mel specialist did not think I would qualify ( but I did).
If you have further questions, pls feel free to email me. I am not able to get the emal notifications to these responses, so I do not always see them. my email is tinamark1@juno.com
Tina
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- May 13, 2014 at 12:27 pm
I am jsut reading these responses, and Brian brings a good point. If you are now NED, you will have to see what reatments you can get in for, and it looks like he may have some good leads for you.
As for treatments since recurrence… I was fortunate to have single, resectable recurrences for a number of years and so I had numerous surgeries ( every year or so) . At one point after a surgery when the recurrences were coming more frequently, I did 6 months of interferon. Also somewhere along the way I was treated with GM-CSF ( to try to ramp up my immune system for the fight). In 2012, my disease had progressed beyone what could be removed by surgery, and at that point I started on Zelboraf because I was BRAF positive. Initial response was amazing, then I recurred by the end of the year. At that point I went on Yervoy and had an initial response, then progression once again. I started the PD1 trial in July last year. As far as I know the BRAF status only matters when taking a drug specifically for the BRAF mutation ( such as Zelboraf)
Are you seeing a melanoma specialist?
Also.. I definitely recommend you using the resources of folks on here. Had it not been for a dear friend telling me about a trial availability for me, I am not sure I would have found it, and even my mel specialist did not think I would qualify ( but I did).
If you have further questions, pls feel free to email me. I am not able to get the emal notifications to these responses, so I do not always see them. my email is tinamark1@juno.com
Tina
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- May 13, 2014 at 12:27 pm
I am jsut reading these responses, and Brian brings a good point. If you are now NED, you will have to see what reatments you can get in for, and it looks like he may have some good leads for you.
As for treatments since recurrence… I was fortunate to have single, resectable recurrences for a number of years and so I had numerous surgeries ( every year or so) . At one point after a surgery when the recurrences were coming more frequently, I did 6 months of interferon. Also somewhere along the way I was treated with GM-CSF ( to try to ramp up my immune system for the fight). In 2012, my disease had progressed beyone what could be removed by surgery, and at that point I started on Zelboraf because I was BRAF positive. Initial response was amazing, then I recurred by the end of the year. At that point I went on Yervoy and had an initial response, then progression once again. I started the PD1 trial in July last year. As far as I know the BRAF status only matters when taking a drug specifically for the BRAF mutation ( such as Zelboraf)
Are you seeing a melanoma specialist?
Also.. I definitely recommend you using the resources of folks on here. Had it not been for a dear friend telling me about a trial availability for me, I am not sure I would have found it, and even my mel specialist did not think I would qualify ( but I did).
If you have further questions, pls feel free to email me. I am not able to get the emal notifications to these responses, so I do not always see them. my email is tinamark1@juno.com
Tina
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- May 12, 2014 at 6:43 pm
Hi Tina
thank you for responding to me and I wish you good health! Can you help answer some questions about the clinical trial?
For pd-1 does it depend on your BRAF mutation? I tested negative. I also heard good things about Yervoy. Lastly are there multiple hospitals that are doing the clinical trial? I'm curious if I would have to travel to take part.
After your recurrence what did they put you on aside from the trial?
Thanks 🙂
-
- May 12, 2014 at 12:45 pm
It is a scary diagnosis to hear, and I am sorry you have had this recurrence. I was 37 when first diagnosed, and had a distant recurrence 3 years later. So, just as an encouragement, that was back in 2005 🙂 . On this day, thank God, I am doing great and responding well in a clinical trial for Anti Pd1 through Merck. Just wanting to encourage you today because I know your head is spinning. Not a one of us here cannot relate to that feeling. Take a deep breath. And, yes, by ALL means, get to a melanoma specialist .. it is a quickly changing landscape of treatment options and you need someone who specializes and can keep up with it all.
Tina
-
- May 12, 2014 at 12:45 pm
It is a scary diagnosis to hear, and I am sorry you have had this recurrence. I was 37 when first diagnosed, and had a distant recurrence 3 years later. So, just as an encouragement, that was back in 2005 🙂 . On this day, thank God, I am doing great and responding well in a clinical trial for Anti Pd1 through Merck. Just wanting to encourage you today because I know your head is spinning. Not a one of us here cannot relate to that feeling. Take a deep breath. And, yes, by ALL means, get to a melanoma specialist .. it is a quickly changing landscape of treatment options and you need someone who specializes and can keep up with it all.
Tina
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- May 13, 2014 at 1:59 am
Erin,
If I understand correctly, if the distant 4mm tumor has been removed you are now NED. Is that correct? If so that is a great place to be but unfortunately if leaves your treatment options a more limited. It is possible to get ipi when NED but it is difficult. You can read a discussion on that topic here:
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34965&p=44434&hilit=adjuvant#p44434
Also if you are NED you can enter a clinical trial for stage IV NED patients. I know of a few that I would try if I was stage IV NED. If you decide to go that route let me know and I can tell you of a few options you may want to look into.
Brian
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- May 13, 2014 at 1:59 am
Erin,
If I understand correctly, if the distant 4mm tumor has been removed you are now NED. Is that correct? If so that is a great place to be but unfortunately if leaves your treatment options a more limited. It is possible to get ipi when NED but it is difficult. You can read a discussion on that topic here:
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34965&p=44434&hilit=adjuvant#p44434
Also if you are NED you can enter a clinical trial for stage IV NED patients. I know of a few that I would try if I was stage IV NED. If you decide to go that route let me know and I can tell you of a few options you may want to look into.
Brian
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- May 13, 2014 at 1:59 am
Erin,
If I understand correctly, if the distant 4mm tumor has been removed you are now NED. Is that correct? If so that is a great place to be but unfortunately if leaves your treatment options a more limited. It is possible to get ipi when NED but it is difficult. You can read a discussion on that topic here:
http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34965&p=44434&hilit=adjuvant#p44434
Also if you are NED you can enter a clinical trial for stage IV NED patients. I know of a few that I would try if I was stage IV NED. If you decide to go that route let me know and I can tell you of a few options you may want to look into.
Brian
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