› Forums › Cutaneous Melanoma Community › Hate to be here, but I need some support
- This topic has 30 replies, 9 voices, and was last updated 7 years ago by
MmP15.
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- February 9, 2017 at 5:07 pm
So… Life has been a wild ride. My fiancee (26) and I got engaged last July. Date is set for July 22nd. We end up losing our beautiful Golden Doodle tragically a few weeks after our engagement. After having 3 Drs. refuse to biopsy her mole, I finally pushed her into getting it removed. Well… you know the story. She was diagnosed Ib 0.9mm breslow, clark IV, miotic 6, nonulcerated, Superficial spreading… Margins clear on original and I believe on the WLE as well. We were told she was clear nodes, but path called back and claimed they found 4 microscopic cells. (she was a little vague on this and I haven't seen the whole report). Onc. Surgeon said that she would be a soft 3a diagnosis. They took 2 nodes and I believe the SLN was the one with the melanoma cells. The surgeon is recommending against CLND as she has only seen 1/71 patients ever have other positive nodes. Right now I think we are leaning that way. I really want her to get on yervoy and anything else you can do at this point in 3a. Her labs have looked good, but she has not had a PET scan. She will meet with the Melanoma specialist sometime next week. She lives and works at Mayo in Rochester, so I know that she is at a good place. If anyone could offer advice or encouragement it would be helpful. Thank you all so much. I hope you all the best in your treatment!
- Replies
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- February 9, 2017 at 5:49 pm
Sorry you (and your girl) are dealing with this. Mayo is a good place. Make sure she does indeed see a melanoma specialist (it sounds like she is). Whether to do, or not to do, a complete lymph node dissection is a bit contraversial. But, more and more the data is looking as though….esp for someone with minimal nodal disease….though there are a very few cases in which it may decrease nodal progression….CLND has no benefit to survival. Here is a link to all the relative reports I have posted:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=CLND
The last post is in there by virtue of a definitition of the ancronym 'CLND'…but I left it up because there may be abbreviations that can benefit you…and well….a little humor never hurts.
I have had TWO clnd's…one in 2003 and another in 2007. To bilat axillae. While I don't regret doing it….and did not develop lymphedema…(folks with groin CLND's are at greater risk for lymphedema though it is a risk of the surgery period). That was back in the dark ages of melanoma world. We do have to move with the times as real data is attained. A bright spot for you and yours is that currently there are 2 sorts of immunotherapy (anti-CTLA-4 and anti-PD-1) FDA approved as well as targeted therapy available for melanoma patients who need them. Additionally, many more drugs and drug combinations are being actively studied. This was not the case as recently as 2010!!!
I wish you both my best. celeste
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- February 9, 2017 at 5:49 pm
Sorry you (and your girl) are dealing with this. Mayo is a good place. Make sure she does indeed see a melanoma specialist (it sounds like she is). Whether to do, or not to do, a complete lymph node dissection is a bit contraversial. But, more and more the data is looking as though….esp for someone with minimal nodal disease….though there are a very few cases in which it may decrease nodal progression….CLND has no benefit to survival. Here is a link to all the relative reports I have posted:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=CLND
The last post is in there by virtue of a definitition of the ancronym 'CLND'…but I left it up because there may be abbreviations that can benefit you…and well….a little humor never hurts.
I have had TWO clnd's…one in 2003 and another in 2007. To bilat axillae. While I don't regret doing it….and did not develop lymphedema…(folks with groin CLND's are at greater risk for lymphedema though it is a risk of the surgery period). That was back in the dark ages of melanoma world. We do have to move with the times as real data is attained. A bright spot for you and yours is that currently there are 2 sorts of immunotherapy (anti-CTLA-4 and anti-PD-1) FDA approved as well as targeted therapy available for melanoma patients who need them. Additionally, many more drugs and drug combinations are being actively studied. This was not the case as recently as 2010!!!
I wish you both my best. celeste
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- February 9, 2017 at 6:33 pm
Thanks Celeste, I've read many of your posts and its great to see you bringing so much support to this community. Just found out from her that the SLN path report stated that it was a 0.02 mm without extracapsular extension tumor. She goes to see the surgical onc again tomorrow. It seems that according to this study (https://www.ncbi.nlm.nih.gov/pubmed/16968875) she fits in a pretty good group and depending on the oncologist could stay at her Ib diagnosis. Does anyone know if they do Yervoy for IIIa without a CLND?
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- February 9, 2017 at 7:16 pm
Hi,
Think the staging would still be Stage 3 a but this article argues that microscopic positives can be treated as a negative.so treatment would be as per earlier stage. The jury is still out on the benefits of CLND at this stage until some clinical trials report but sometimes clinical trials make it a requirement for stage 3 treatment..
Yervoy is FDA approved for stage 3 melanoma – didn't see any restrctions re 3a in the announcement.
Best wishes
Deb
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- February 9, 2017 at 7:16 pm
Hi,
Think the staging would still be Stage 3 a but this article argues that microscopic positives can be treated as a negative.so treatment would be as per earlier stage. The jury is still out on the benefits of CLND at this stage until some clinical trials report but sometimes clinical trials make it a requirement for stage 3 treatment..
Yervoy is FDA approved for stage 3 melanoma – didn't see any restrctions re 3a in the announcement.
Best wishes
Deb
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- February 9, 2017 at 7:16 pm
Hi,
Think the staging would still be Stage 3 a but this article argues that microscopic positives can be treated as a negative.so treatment would be as per earlier stage. The jury is still out on the benefits of CLND at this stage until some clinical trials report but sometimes clinical trials make it a requirement for stage 3 treatment..
Yervoy is FDA approved for stage 3 melanoma – didn't see any restrctions re 3a in the announcement.
Best wishes
Deb
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- February 9, 2017 at 7:33 pm
Yes she can still get Yervoy without a CLND. I did not have a CLND, just went straight to Yervoy.
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- February 9, 2017 at 7:33 pm
Yes she can still get Yervoy without a CLND. I did not have a CLND, just went straight to Yervoy.
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- February 9, 2017 at 7:33 pm
Yes she can still get Yervoy without a CLND. I did not have a CLND, just went straight to Yervoy.
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- February 13, 2017 at 6:55 pm
I was in a very similar situation as your fiance. My primary was .9mm with 1 mitosis and only a few micromets in one node. Technically, it’s stage 3b although with the new staging in January 2018, it’s Stage 3A.As far as CLND, there is no right answer. There is data suggesting, the prognosis is the same without the surgery. The chances of additional nodes having metastisis is very low, but keep in mind those nodes are not scrutinized as finely as the sentinel nodes. So, the question is, did you remove micrometastis in other nodes? You will never know.
It is also fact that younger people tend to have a higher rate of positive sentinel nodes. Why is this? A theory is that younger people have a more active immune system. So, would those micromets have developed into further metastis? No one knows. They could be marked for destruction and never have caused any problems.
So, your fiance needs to make a decision and feel comfortable with it. The study on CLND won’t have results until 2019, so that doesn’t help now. I elected to do the surgery in my auxiliary. I experience some nerve pain, but no lymphedema. I have full mobility and I have very little negative effects from it.
As far as therapy, that is again another personal choice. Some people choose to, and others do not. The new immunotherapies do not go without side effects. Some people have none at all. Would your fiance ever metastesise without therapy? There is probably a 75 percent chance they would not. Keep in mind tumor thickness and tumor burden in the sentinel lymph nodes are strong predictors of progression to stage 4. Your fiance’s numbers are very low. As you said a “soft stage 3”. I was told “barely stage 3”. Can thinner melanomas metastise? Sure can. Most importantly make a decision you feel comfortable with and stick with it. In the end, there may be no right answer.
As for me, I’ve elected to live my life. I’m a healthy 42 year old. I’m just keeping an eye on things. Im only 8 months into this. I wish I had years of wisdom to pass on. I wish your fiance the best.
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- February 13, 2017 at 6:55 pm
I was in a very similar situation as your fiance. My primary was .9mm with 1 mitosis and only a few micromets in one node. Technically, it’s stage 3b although with the new staging in January 2018, it’s Stage 3A.As far as CLND, there is no right answer. There is data suggesting, the prognosis is the same without the surgery. The chances of additional nodes having metastisis is very low, but keep in mind those nodes are not scrutinized as finely as the sentinel nodes. So, the question is, did you remove micrometastis in other nodes? You will never know.
It is also fact that younger people tend to have a higher rate of positive sentinel nodes. Why is this? A theory is that younger people have a more active immune system. So, would those micromets have developed into further metastis? No one knows. They could be marked for destruction and never have caused any problems.
So, your fiance needs to make a decision and feel comfortable with it. The study on CLND won’t have results until 2019, so that doesn’t help now. I elected to do the surgery in my auxiliary. I experience some nerve pain, but no lymphedema. I have full mobility and I have very little negative effects from it.
As far as therapy, that is again another personal choice. Some people choose to, and others do not. The new immunotherapies do not go without side effects. Some people have none at all. Would your fiance ever metastesise without therapy? There is probably a 75 percent chance they would not. Keep in mind tumor thickness and tumor burden in the sentinel lymph nodes are strong predictors of progression to stage 4. Your fiance’s numbers are very low. As you said a “soft stage 3”. I was told “barely stage 3”. Can thinner melanomas metastise? Sure can. Most importantly make a decision you feel comfortable with and stick with it. In the end, there may be no right answer.
As for me, I’ve elected to live my life. I’m a healthy 42 year old. I’m just keeping an eye on things. Im only 8 months into this. I wish I had years of wisdom to pass on. I wish your fiance the best.
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- February 13, 2017 at 6:55 pm
I was in a very similar situation as your fiance. My primary was .9mm with 1 mitosis and only a few micromets in one node. Technically, it’s stage 3b although with the new staging in January 2018, it’s Stage 3A.As far as CLND, there is no right answer. There is data suggesting, the prognosis is the same without the surgery. The chances of additional nodes having metastisis is very low, but keep in mind those nodes are not scrutinized as finely as the sentinel nodes. So, the question is, did you remove micrometastis in other nodes? You will never know.
It is also fact that younger people tend to have a higher rate of positive sentinel nodes. Why is this? A theory is that younger people have a more active immune system. So, would those micromets have developed into further metastis? No one knows. They could be marked for destruction and never have caused any problems.
So, your fiance needs to make a decision and feel comfortable with it. The study on CLND won’t have results until 2019, so that doesn’t help now. I elected to do the surgery in my auxiliary. I experience some nerve pain, but no lymphedema. I have full mobility and I have very little negative effects from it.
As far as therapy, that is again another personal choice. Some people choose to, and others do not. The new immunotherapies do not go without side effects. Some people have none at all. Would your fiance ever metastesise without therapy? There is probably a 75 percent chance they would not. Keep in mind tumor thickness and tumor burden in the sentinel lymph nodes are strong predictors of progression to stage 4. Your fiance’s numbers are very low. As you said a “soft stage 3”. I was told “barely stage 3”. Can thinner melanomas metastise? Sure can. Most importantly make a decision you feel comfortable with and stick with it. In the end, there may be no right answer.
As for me, I’ve elected to live my life. I’m a healthy 42 year old. I’m just keeping an eye on things. Im only 8 months into this. I wish I had years of wisdom to pass on. I wish your fiance the best.
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- February 9, 2017 at 6:33 pm
Thanks Celeste, I've read many of your posts and its great to see you bringing so much support to this community. Just found out from her that the SLN path report stated that it was a 0.02 mm without extracapsular extension tumor. She goes to see the surgical onc again tomorrow. It seems that according to this study (https://www.ncbi.nlm.nih.gov/pubmed/16968875) she fits in a pretty good group and depending on the oncologist could stay at her Ib diagnosis. Does anyone know if they do Yervoy for IIIa without a CLND?
-
- February 9, 2017 at 6:33 pm
Thanks Celeste, I've read many of your posts and its great to see you bringing so much support to this community. Just found out from her that the SLN path report stated that it was a 0.02 mm without extracapsular extension tumor. She goes to see the surgical onc again tomorrow. It seems that according to this study (https://www.ncbi.nlm.nih.gov/pubmed/16968875) she fits in a pretty good group and depending on the oncologist could stay at her Ib diagnosis. Does anyone know if they do Yervoy for IIIa without a CLND?
-
- February 9, 2017 at 5:49 pm
Sorry you (and your girl) are dealing with this. Mayo is a good place. Make sure she does indeed see a melanoma specialist (it sounds like she is). Whether to do, or not to do, a complete lymph node dissection is a bit contraversial. But, more and more the data is looking as though….esp for someone with minimal nodal disease….though there are a very few cases in which it may decrease nodal progression….CLND has no benefit to survival. Here is a link to all the relative reports I have posted:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=CLND
The last post is in there by virtue of a definitition of the ancronym 'CLND'…but I left it up because there may be abbreviations that can benefit you…and well….a little humor never hurts.
I have had TWO clnd's…one in 2003 and another in 2007. To bilat axillae. While I don't regret doing it….and did not develop lymphedema…(folks with groin CLND's are at greater risk for lymphedema though it is a risk of the surgery period). That was back in the dark ages of melanoma world. We do have to move with the times as real data is attained. A bright spot for you and yours is that currently there are 2 sorts of immunotherapy (anti-CTLA-4 and anti-PD-1) FDA approved as well as targeted therapy available for melanoma patients who need them. Additionally, many more drugs and drug combinations are being actively studied. This was not the case as recently as 2010!!!
I wish you both my best. celeste
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- February 9, 2017 at 7:45 pm
Its hard to know for certain what to do.Everyone has a different story . I had a WLE for 1b and negative sentinel node so no further treatment BUT it returned to a lymph node in same area 7 years later.Had 10 removed from groin and before I could start infusions it was in a pelvic node up by my hip. 3 weeks ago I had all 28 deep nodes out. So if I had it to do over, the would all come out asap. But that’s my own experience and not everyone would agree. Good luck to you both and keep in mind there are new and improved treatments in case it happens to return. -
- February 9, 2017 at 7:45 pm
Its hard to know for certain what to do.Everyone has a different story . I had a WLE for 1b and negative sentinel node so no further treatment BUT it returned to a lymph node in same area 7 years later.Had 10 removed from groin and before I could start infusions it was in a pelvic node up by my hip. 3 weeks ago I had all 28 deep nodes out. So if I had it to do over, the would all come out asap. But that’s my own experience and not everyone would agree. Good luck to you both and keep in mind there are new and improved treatments in case it happens to return. -
- February 9, 2017 at 7:45 pm
Its hard to know for certain what to do.Everyone has a different story . I had a WLE for 1b and negative sentinel node so no further treatment BUT it returned to a lymph node in same area 7 years later.Had 10 removed from groin and before I could start infusions it was in a pelvic node up by my hip. 3 weeks ago I had all 28 deep nodes out. So if I had it to do over, the would all come out asap. But that’s my own experience and not everyone would agree. Good luck to you both and keep in mind there are new and improved treatments in case it happens to return. -
- February 9, 2017 at 9:43 pm
Fortunately there are treatments to deal with stage 3 mel. However, I believe the oncs are moving to treating stage 3 with Keytruda or Opdivo which are less toxic than Yervoy. I would hope that Mayo has clinical trials where you can progress to the PD1's.
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- February 9, 2017 at 9:43 pm
Fortunately there are treatments to deal with stage 3 mel. However, I believe the oncs are moving to treating stage 3 with Keytruda or Opdivo which are less toxic than Yervoy. I would hope that Mayo has clinical trials where you can progress to the PD1's.
-
- February 9, 2017 at 9:43 pm
Fortunately there are treatments to deal with stage 3 mel. However, I believe the oncs are moving to treating stage 3 with Keytruda or Opdivo which are less toxic than Yervoy. I would hope that Mayo has clinical trials where you can progress to the PD1's.
-
- February 13, 2017 at 8:40 pm
Good afternoon and unfortunately…welcome!! I was diagnosed T1B in July 2015….Had SNL in August 2015 with one of the 2 nodes coming back with what I have noly been told was a small cluster of cancer cells. I graduated to State 3b. My reports say State 3b; breslow depth 0.8 mm, mitotic index >1, no ulceration, N1; M0. My oncologist tells me that I "barely made it into Stage 3 with the small amount of cells in my node. I elected to have the CLND and that was done in September 2015. My surgeon was able to (or just did) remove 4 more nodes…all of which came back with no cancer cells. (After originally going in for results and being told that 3 of the 4 were positive and after further examination found out the black in my nodes was actually tattoo ink from a couple tattoos I have on my left arm – CNLD was under my left arm) I have often questioned why so few nodes were taken during this CLND???? Anyways, after all the cutting and ripping things out of my body I finally saw an oncologist in September 2015. He originally sent me to Seattle to try to get on a trial as the only option at that time was the interferon and he wasn't to keen on putting through that for the small benefit. I went to Seattle…could not afford to fly out there every week for 3 months so I decided to do the interferon. And totally prepared myself to put all the statistics to a test and beat that crap!! My husband and I had a trip planned to Miami in November and so I asked if I could just start treatment after out trip so I would not be sick. I came back, received my first week of interferon shots, went into see my oncologits to learn how to inject myself. It was at this appointment that my oncologist said he wanted to wait and see if he could switch my treatment and get insurance approval as Yervoy had just been approved for stage 3 treatment. He go me all approved and I started treatment November 23, 2015. I was able to breeze past 3 treatments when I got a bad head cold and a head ache that would not stop. I was unfortunatley unable to continue treatment at that point due to my pituitary swelling. I do not regret my choice to hop on the Yervoy train at all….and I wish I could have continued and finished treatment. I had no side effects up to that point other than being itchy. The unknown in this rotten curse is so firightening I was, and still am, willing to do anything to keep it from ever getting the best of me!! I wish you and your fiance the best of luck.
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- February 13, 2017 at 8:40 pm
Good afternoon and unfortunately…welcome!! I was diagnosed T1B in July 2015….Had SNL in August 2015 with one of the 2 nodes coming back with what I have noly been told was a small cluster of cancer cells. I graduated to State 3b. My reports say State 3b; breslow depth 0.8 mm, mitotic index >1, no ulceration, N1; M0. My oncologist tells me that I "barely made it into Stage 3 with the small amount of cells in my node. I elected to have the CLND and that was done in September 2015. My surgeon was able to (or just did) remove 4 more nodes…all of which came back with no cancer cells. (After originally going in for results and being told that 3 of the 4 were positive and after further examination found out the black in my nodes was actually tattoo ink from a couple tattoos I have on my left arm – CNLD was under my left arm) I have often questioned why so few nodes were taken during this CLND???? Anyways, after all the cutting and ripping things out of my body I finally saw an oncologist in September 2015. He originally sent me to Seattle to try to get on a trial as the only option at that time was the interferon and he wasn't to keen on putting through that for the small benefit. I went to Seattle…could not afford to fly out there every week for 3 months so I decided to do the interferon. And totally prepared myself to put all the statistics to a test and beat that crap!! My husband and I had a trip planned to Miami in November and so I asked if I could just start treatment after out trip so I would not be sick. I came back, received my first week of interferon shots, went into see my oncologits to learn how to inject myself. It was at this appointment that my oncologist said he wanted to wait and see if he could switch my treatment and get insurance approval as Yervoy had just been approved for stage 3 treatment. He go me all approved and I started treatment November 23, 2015. I was able to breeze past 3 treatments when I got a bad head cold and a head ache that would not stop. I was unfortunatley unable to continue treatment at that point due to my pituitary swelling. I do not regret my choice to hop on the Yervoy train at all….and I wish I could have continued and finished treatment. I had no side effects up to that point other than being itchy. The unknown in this rotten curse is so firightening I was, and still am, willing to do anything to keep it from ever getting the best of me!! I wish you and your fiance the best of luck.
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- February 14, 2017 at 9:00 pm
Just an update to the original post. Apparently if we had been at any other lab the pathologist would have missed the diagnosis in the SLN. He called the surgeon to tell her that he found 4 isolated cells of melanoma. All things considered this was as good as we could have hoped for. After meeting with the general surgeon and on of the top Melanoma specialists in the nation we decided to undergo the CLND. Now we are waiting on path results from those nodes. She meets with the Melanoma specialist again on the 27th. Thank you all for all of the support. I hope you all are doing well!
-
- February 14, 2017 at 9:00 pm
Just an update to the original post. Apparently if we had been at any other lab the pathologist would have missed the diagnosis in the SLN. He called the surgeon to tell her that he found 4 isolated cells of melanoma. All things considered this was as good as we could have hoped for. After meeting with the general surgeon and on of the top Melanoma specialists in the nation we decided to undergo the CLND. Now we are waiting on path results from those nodes. She meets with the Melanoma specialist again on the 27th. Thank you all for all of the support. I hope you all are doing well!
-
- February 14, 2017 at 9:00 pm
Just an update to the original post. Apparently if we had been at any other lab the pathologist would have missed the diagnosis in the SLN. He called the surgeon to tell her that he found 4 isolated cells of melanoma. All things considered this was as good as we could have hoped for. After meeting with the general surgeon and on of the top Melanoma specialists in the nation we decided to undergo the CLND. Now we are waiting on path results from those nodes. She meets with the Melanoma specialist again on the 27th. Thank you all for all of the support. I hope you all are doing well!
-
- February 13, 2017 at 8:40 pm
Good afternoon and unfortunately…welcome!! I was diagnosed T1B in July 2015….Had SNL in August 2015 with one of the 2 nodes coming back with what I have noly been told was a small cluster of cancer cells. I graduated to State 3b. My reports say State 3b; breslow depth 0.8 mm, mitotic index >1, no ulceration, N1; M0. My oncologist tells me that I "barely made it into Stage 3 with the small amount of cells in my node. I elected to have the CLND and that was done in September 2015. My surgeon was able to (or just did) remove 4 more nodes…all of which came back with no cancer cells. (After originally going in for results and being told that 3 of the 4 were positive and after further examination found out the black in my nodes was actually tattoo ink from a couple tattoos I have on my left arm – CNLD was under my left arm) I have often questioned why so few nodes were taken during this CLND???? Anyways, after all the cutting and ripping things out of my body I finally saw an oncologist in September 2015. He originally sent me to Seattle to try to get on a trial as the only option at that time was the interferon and he wasn't to keen on putting through that for the small benefit. I went to Seattle…could not afford to fly out there every week for 3 months so I decided to do the interferon. And totally prepared myself to put all the statistics to a test and beat that crap!! My husband and I had a trip planned to Miami in November and so I asked if I could just start treatment after out trip so I would not be sick. I came back, received my first week of interferon shots, went into see my oncologits to learn how to inject myself. It was at this appointment that my oncologist said he wanted to wait and see if he could switch my treatment and get insurance approval as Yervoy had just been approved for stage 3 treatment. He go me all approved and I started treatment November 23, 2015. I was able to breeze past 3 treatments when I got a bad head cold and a head ache that would not stop. I was unfortunatley unable to continue treatment at that point due to my pituitary swelling. I do not regret my choice to hop on the Yervoy train at all….and I wish I could have continued and finished treatment. I had no side effects up to that point other than being itchy. The unknown in this rotten curse is so firightening I was, and still am, willing to do anything to keep it from ever getting the best of me!! I wish you and your fiance the best of luck.
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Tagged: cutaneous melanoma
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