New Here-Yervoy instead of CLND in Groin

I had 3 positive lymph nodes in my left groin and did not have a CLND. Started Yervoy a month after my SLNB. So far so good. It's definitely a route that is becoming more common.

You can go into my profile and read my history for an idea on what side effects I've had and all that. 

All the best,

I had 3 positive lymph nodes in my left groin and did not have a CLND. Started Yervoy a month after my SLNB. So far so good. It's definitely a route that is becoming more common.

You can go into my profile and read my history for an idea on what side effects I've had and all that. 

All the best,

I had 3 positive lymph nodes in my left groin and did not have a CLND. Started Yervoy a month after my SLNB. So far so good. It's definitely a route that is becoming more common.

You can go into my profile and read my history for an idea on what side effects I've had and all that. 

All the best,

Hi – sorry that you find yourself here.

I went straight to Ipi/Yervoy (not even a SLB) for different reasons.

I am stage 3C. I had two substantial tumours in my right armpit – my primary was on my forearm. I did not even have the tumours in my armpit removed, just the primary of the forearm. I went straight to Yervoy/Ipi. I know I am a responder because my tumours shrank.

I have an extreme phobia of doctors/hospitals, which was why I went my route. However, during conversatons with my doctor, she showed me the survival graphs. Only one-quarter of stage 3C patients had their survival rate improved by having the CLND.

On the other hand, the stats then were that only 15% of people responded to Ipi/Yervoy.

I went my way because (1)  Ipi/Yervoy was outpatient treatment – just four sessions in a clinic without a doctor in sight, (2) the CLND involved a minimum of a three day hospital admission and a general anaesthetic, (3) the CLND carried a substantial risk of lymphoedema [I have lots of the risk factors] and the function of my right hand is really important to me, (4) for me it is all about quality of life.

Although there are 'accepted' treatment paths those paths are not the same for all melanoma teams and the landscape of melanoma treatment is changing quickly. One example is that that some mainland European teams have dispensed with CLNDs and are monitoring lymph nodes using ultrasound. Another is the introduction of immunotherapy (like Yervoy/Ipi and anti-PD1).

My advice is to decide what you want to do and go for it – decide your path and move on, eyes forward, without backwards glances or second guessing.

Hi – sorry that you find yourself here.

I went straight to Ipi/Yervoy (not even a SLB) for different reasons.

I am stage 3C. I had two substantial tumours in my right armpit – my primary was on my forearm. I did not even have the tumours in my armpit removed, just the primary of the forearm. I went straight to Yervoy/Ipi. I know I am a responder because my tumours shrank.

I have an extreme phobia of doctors/hospitals, which was why I went my route. However, during conversatons with my doctor, she showed me the survival graphs. Only one-quarter of stage 3C patients had their survival rate improved by having the CLND.

On the other hand, the stats then were that only 15% of people responded to Ipi/Yervoy.

I went my way because (1)  Ipi/Yervoy was outpatient treatment – just four sessions in a clinic without a doctor in sight, (2) the CLND involved a minimum of a three day hospital admission and a general anaesthetic, (3) the CLND carried a substantial risk of lymphoedema [I have lots of the risk factors] and the function of my right hand is really important to me, (4) for me it is all about quality of life.

Although there are 'accepted' treatment paths those paths are not the same for all melanoma teams and the landscape of melanoma treatment is changing quickly. One example is that that some mainland European teams have dispensed with CLNDs and are monitoring lymph nodes using ultrasound. Another is the introduction of immunotherapy (like Yervoy/Ipi and anti-PD1).

My advice is to decide what you want to do and go for it – decide your path and move on, eyes forward, without backwards glances or second guessing.

Hi – sorry that you find yourself here.

I went straight to Ipi/Yervoy (not even a SLB) for different reasons.

I am stage 3C. I had two substantial tumours in my right armpit – my primary was on my forearm. I did not even have the tumours in my armpit removed, just the primary of the forearm. I went straight to Yervoy/Ipi. I know I am a responder because my tumours shrank.

I have an extreme phobia of doctors/hospitals, which was why I went my route. However, during conversatons with my doctor, she showed me the survival graphs. Only one-quarter of stage 3C patients had their survival rate improved by having the CLND.

On the other hand, the stats then were that only 15% of people responded to Ipi/Yervoy.

I went my way because (1)  Ipi/Yervoy was outpatient treatment – just four sessions in a clinic without a doctor in sight, (2) the CLND involved a minimum of a three day hospital admission and a general anaesthetic, (3) the CLND carried a substantial risk of lymphoedema [I have lots of the risk factors] and the function of my right hand is really important to me, (4) for me it is all about quality of life.

Although there are 'accepted' treatment paths those paths are not the same for all melanoma teams and the landscape of melanoma treatment is changing quickly. One example is that that some mainland European teams have dispensed with CLNDs and are monitoring lymph nodes using ultrasound. Another is the introduction of immunotherapy (like Yervoy/Ipi and anti-PD1).

My advice is to decide what you want to do and go for it – decide your path and move on, eyes forward, without backwards glances or second guessing.

dmturner…sorry that you "had" to find this sight and have been diagnosed. By the way, do you have a diagnosis of Melanoma or is this because of the positive lymph node in your right groin? Just curious.

I "had" to join this forum about six weeks ago. I am stage 3a. I had the SNLB and WLE of my right knee back on July 12th. I was told that the area around my right knee is clear of any further melanoma. They only took one lymph node out of my right groin and it came back positive. I kinda wish they had taken up to five just to see what those results would've been. It has been recommended by my surgical oncologist to have the CNLD done. By the way, I live in Kansas City and my surgeon is part of the University of Kansas (KU) Hospital Cancer Center. I also consulted with MD Anderson for whom I paid a visit to back in June….I was diagnosed back in late May. MD also recommends for me to have the CLND. Also had my labs and tests sent to Sloan Kettering for another opinion through a contact that I have. Sloan said that bypassing the CLND and starting on Yervoy and nodal ultrasounds every 3-4 months is a very reasonable approach (perhaps because I'm stage 3a with little node involvement and all other tests have been clear).

I had my follow up appointment with my oncologist at KU on July 28th. I peppered him with questions, qouted data, the study that Jennicurn referred to about whether or not "I" should have the additional surgery. He qouted me 70-80% chance of infection, 30% chance of blood clotting and a "reasonable" chance of lymphadema at least for the for first year, but he still recommended me having the surgery. The surgery is their standard of care just like at MD Anderson. Ironically, my surgeon at KU trained at MDA. So I have scheduled the surgery for August 26th but I am nowhere near committed to doing it. I at least wanted to be on the surgery schedule while I had time to think about this from various angles and viewpoints.

I meet with my medical oncologist on Monday August 15th to go over all of my test results including my BRAF results. I will speak to him about my idea of foregoing the surgery, going on Yervoy, doing scans and going the "wait and see" approach and even if I might qualify for a trial without having the CLND? A guy I know here in KC was diagnosed with melanoma like 6 years ago and is stage 4 but with no primary site of lesion. He decided to forego the CLND, went on therapy, did his scans and now is NED.

Good luck with everything! This forum is a good place to visit to learn about other people, what has or hasn't worked and to help formulate opinions and questions for your team of doctors. At the end of the day, it is very much a personal decision.

Let me know if you want to talk any more with me about what I'm dealing with and going through especially concerning my mindset….

Stacy

dmturner…sorry that you "had" to find this sight and have been diagnosed. By the way, do you have a diagnosis of Melanoma or is this because of the positive lymph node in your right groin? Just curious.

I "had" to join this forum about six weeks ago. I am stage 3a. I had the SNLB and WLE of my right knee back on July 12th. I was told that the area around my right knee is clear of any further melanoma. They only took one lymph node out of my right groin and it came back positive. I kinda wish they had taken up to five just to see what those results would've been. It has been recommended by my surgical oncologist to have the CNLD done. By the way, I live in Kansas City and my surgeon is part of the University of Kansas (KU) Hospital Cancer Center. I also consulted with MD Anderson for whom I paid a visit to back in June….I was diagnosed back in late May. MD also recommends for me to have the CLND. Also had my labs and tests sent to Sloan Kettering for another opinion through a contact that I have. Sloan said that bypassing the CLND and starting on Yervoy and nodal ultrasounds every 3-4 months is a very reasonable approach (perhaps because I'm stage 3a with little node involvement and all other tests have been clear).

I had my follow up appointment with my oncologist at KU on July 28th. I peppered him with questions, qouted data, the study that Jennicurn referred to about whether or not "I" should have the additional surgery. He qouted me 70-80% chance of infection, 30% chance of blood clotting and a "reasonable" chance of lymphadema at least for the for first year, but he still recommended me having the surgery. The surgery is their standard of care just like at MD Anderson. Ironically, my surgeon at KU trained at MDA. So I have scheduled the surgery for August 26th but I am nowhere near committed to doing it. I at least wanted to be on the surgery schedule while I had time to think about this from various angles and viewpoints.

I meet with my medical oncologist on Monday August 15th to go over all of my test results including my BRAF results. I will speak to him about my idea of foregoing the surgery, going on Yervoy, doing scans and going the "wait and see" approach and even if I might qualify for a trial without having the CLND? A guy I know here in KC was diagnosed with melanoma like 6 years ago and is stage 4 but with no primary site of lesion. He decided to forego the CLND, went on therapy, did his scans and now is NED.

Good luck with everything! This forum is a good place to visit to learn about other people, what has or hasn't worked and to help formulate opinions and questions for your team of doctors. At the end of the day, it is very much a personal decision.

Let me know if you want to talk any more with me about what I'm dealing with and going through especially concerning my mindset….

Stacy

dmturner…sorry that you "had" to find this sight and have been diagnosed. By the way, do you have a diagnosis of Melanoma or is this because of the positive lymph node in your right groin? Just curious.

I "had" to join this forum about six weeks ago. I am stage 3a. I had the SNLB and WLE of my right knee back on July 12th. I was told that the area around my right knee is clear of any further melanoma. They only took one lymph node out of my right groin and it came back positive. I kinda wish they had taken up to five just to see what those results would've been. It has been recommended by my surgical oncologist to have the CNLD done. By the way, I live in Kansas City and my surgeon is part of the University of Kansas (KU) Hospital Cancer Center. I also consulted with MD Anderson for whom I paid a visit to back in June….I was diagnosed back in late May. MD also recommends for me to have the CLND. Also had my labs and tests sent to Sloan Kettering for another opinion through a contact that I have. Sloan said that bypassing the CLND and starting on Yervoy and nodal ultrasounds every 3-4 months is a very reasonable approach (perhaps because I'm stage 3a with little node involvement and all other tests have been clear).

I had my follow up appointment with my oncologist at KU on July 28th. I peppered him with questions, qouted data, the study that Jennicurn referred to about whether or not "I" should have the additional surgery. He qouted me 70-80% chance of infection, 30% chance of blood clotting and a "reasonable" chance of lymphadema at least for the for first year, but he still recommended me having the surgery. The surgery is their standard of care just like at MD Anderson. Ironically, my surgeon at KU trained at MDA. So I have scheduled the surgery for August 26th but I am nowhere near committed to doing it. I at least wanted to be on the surgery schedule while I had time to think about this from various angles and viewpoints.

I meet with my medical oncologist on Monday August 15th to go over all of my test results including my BRAF results. I will speak to him about my idea of foregoing the surgery, going on Yervoy, doing scans and going the "wait and see" approach and even if I might qualify for a trial without having the CLND? A guy I know here in KC was diagnosed with melanoma like 6 years ago and is stage 4 but with no primary site of lesion. He decided to forego the CLND, went on therapy, did his scans and now is NED.

Good luck with everything! This forum is a good place to visit to learn about other people, what has or hasn't worked and to help formulate opinions and questions for your team of doctors. At the end of the day, it is very much a personal decision.

Let me know if you want to talk any more with me about what I'm dealing with and going through especially concerning my mindset….

Stacy

This has become one of the hottest topics on the board with a split vote on what is the best strategy.  What needs to be realized is that whatever course is chosen, there comes risks.  In every treatment, there is no action without a reaction, whether it be adverse side-effects, disqualification from future treatment options, or simply a response, or non-response.  I doubt there is any one single correct answer, and ultimately it is a personal decision since there lacks clear consensus from the medical community.  But take into account a CLND of the groin carries so many additional risks, and possibilities of adverse events that the more common axilla dissection does not.  It must be considered carefully and the idea that the CLND can completely remove every trace of mel from the body seems like fantasy to me anyway.  The only way to truly beat this beast is when the immune system is attacking it from within.  Surgeries are rarely the end of the line for our ailment.  In my opinion, this is the basis of the best argument against the groin CLND and for immunotherapy and close monitoring of lymph nodes via ultrasound and/or scans.

Gary

This has become one of the hottest topics on the board with a split vote on what is the best strategy.  What needs to be realized is that whatever course is chosen, there comes risks.  In every treatment, there is no action without a reaction, whether it be adverse side-effects, disqualification from future treatment options, or simply a response, or non-response.  I doubt there is any one single correct answer, and ultimately it is a personal decision since there lacks clear consensus from the medical community.  But take into account a CLND of the groin carries so many additional risks, and possibilities of adverse events that the more common axilla dissection does not.  It must be considered carefully and the idea that the CLND can completely remove every trace of mel from the body seems like fantasy to me anyway.  The only way to truly beat this beast is when the immune system is attacking it from within.  Surgeries are rarely the end of the line for our ailment.  In my opinion, this is the basis of the best argument against the groin CLND and for immunotherapy and close monitoring of lymph nodes via ultrasound and/or scans.

Gary

This has become one of the hottest topics on the board with a split vote on what is the best strategy.  What needs to be realized is that whatever course is chosen, there comes risks.  In every treatment, there is no action without a reaction, whether it be adverse side-effects, disqualification from future treatment options, or simply a response, or non-response.  I doubt there is any one single correct answer, and ultimately it is a personal decision since there lacks clear consensus from the medical community.  But take into account a CLND of the groin carries so many additional risks, and possibilities of adverse events that the more common axilla dissection does not.  It must be considered carefully and the idea that the CLND can completely remove every trace of mel from the body seems like fantasy to me anyway.  The only way to truly beat this beast is when the immune system is attacking it from within.  Surgeries are rarely the end of the line for our ailment.  In my opinion, this is the basis of the best argument against the groin CLND and for immunotherapy and close monitoring of lymph nodes via ultrasound and/or scans.

Gary

One thing that occurs to me is that you might not know if you are stage 3a, b or c without the CLND.. In my case there were suspicious nodes on my neck CT and after dissectuon it turned out I had a total of 4 positive nodes – making me 3c , but I didn't know that until after my surgery.  

I would have LOVED to have not done this surgery- I have shoulder dysfunction and nerve pain, my neck is stiff and sore. However I think it would've been bad news to leave those infected nodes in place. 

Just another perspective.

Peggy

One thing that occurs to me is that you might not know if you are stage 3a, b or c without the CLND.. In my case there were suspicious nodes on my neck CT and after dissectuon it turned out I had a total of 4 positive nodes – making me 3c , but I didn't know that until after my surgery.  

I would have LOVED to have not done this surgery- I have shoulder dysfunction and nerve pain, my neck is stiff and sore. However I think it would've been bad news to leave those infected nodes in place. 

Just another perspective.

Peggy

One thing that occurs to me is that you might not know if you are stage 3a, b or c without the CLND.. In my case there were suspicious nodes on my neck CT and after dissectuon it turned out I had a total of 4 positive nodes – making me 3c , but I didn't know that until after my surgery.  

I would have LOVED to have not done this surgery- I have shoulder dysfunction and nerve pain, my neck is stiff and sore. However I think it would've been bad news to leave those infected nodes in place. 

Just another perspective.

Peggy