› Forums › General Melanoma Community › Do I really need a CLND?
- This topic has 63 replies, 9 voices, and was last updated 7 years, 9 months ago by
jennunicorn.
- Post
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- July 26, 2016 at 5:06 pm
Hello all,
I hope everyone is doing well or as well as can be expected! I typed in CLND in the search engine for this site and I came across 5 people who had a CLND and I read through their stories and responses that they received from other people on this board. I gotta think that there are more people on here who have had the CLND procedure unfortunately!
So I just wanted to ask the question….Is there a need to have a CLND? I guess conventional wisdom says yes, but I very curious. I came across some results from a phase III study presented last year in May at the 2015 American Society of Clinical Oncology (ASCO) meeting in Chicago entitled "No need for Lymph Node Dissection in Certain Melanoma Patients".
Basically saying that a CLND for people with MICROmetastatic cutaneous melanoma following a positive SLNB "may" not be necessary. So after my SLNB, my pathology report states that I am MICRO and not MACRO!
In the paper it states that "a potential improvement in survival is only one reason that a patient could be recommended to undergo a CLND. The main reason is the chance of a local lymph node recurrence that would later require more difficult surgery". So I see the pros and cons.
Now my Oncologist at The University of KU told me that I would have a CLND if the pet scan and mri results come back negative. I have also reached out to MD Anderson about this and am awaiting their response to my question. I meet with my Oncologist from KU on Thursday so I will definitely ask this question to discuss.
I am curious to know everyone's thoughts on this and especially the thoughts from anyone that actually had the procedure and what the recovery was like, life thereafter, etc.
Just a reminder…my tumor stage from the AJCC based upon one positive lymph node from my SLNB says that I am T3aN1a, no ulceration, micrometastasis, 3mm, involves 7% of nodal cross sectional area and is negative for extracapsular extension.
Thanks in advance for your responses…..Stacy
- Replies
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- July 26, 2016 at 5:17 pm
I think you need to search again. CLND is the standard of care for stage 3 and there are certainly more than 5 people who had this done. Look on page 6 of the posts, there is a post and responses about a CLND there. The OP was stage 3C, but there are lots of responses. I'm not saying a CLND is what you should do because it does bare researching so you know pros/cons. One thing to note, if you want to participate in clinical trials, not having the CLND may affect your ability to do a trial. As I said, the CLND is considered the standard of care at this point and until that readily changes, most clinical trials require it.
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- July 26, 2016 at 5:17 pm
I think you need to search again. CLND is the standard of care for stage 3 and there are certainly more than 5 people who had this done. Look on page 6 of the posts, there is a post and responses about a CLND there. The OP was stage 3C, but there are lots of responses. I'm not saying a CLND is what you should do because it does bare researching so you know pros/cons. One thing to note, if you want to participate in clinical trials, not having the CLND may affect your ability to do a trial. As I said, the CLND is considered the standard of care at this point and until that readily changes, most clinical trials require it.
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- July 26, 2016 at 5:17 pm
I think you need to search again. CLND is the standard of care for stage 3 and there are certainly more than 5 people who had this done. Look on page 6 of the posts, there is a post and responses about a CLND there. The OP was stage 3C, but there are lots of responses. I'm not saying a CLND is what you should do because it does bare researching so you know pros/cons. One thing to note, if you want to participate in clinical trials, not having the CLND may affect your ability to do a trial. As I said, the CLND is considered the standard of care at this point and until that readily changes, most clinical trials require it.
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- July 26, 2016 at 10:02 pm
Ah, the old should I or shouldn't I CLND question. Janner is right, it is still considered the standard of care and most places will tell you to get one. But, I will say that both places I have been to (currently at UCSF melanoma center) did not recommend I get one, I had 3 out of 4 micro positive nodes after the SLNB. Was never even offered a CLND, but I don't think I would have gone through it anyway. I started Ipi adjuvant treatment and for me felt like I would just tackle any remaining cells that way. A lot of people deal with lymphedema, usually lifelong, after that type of surgery and recovery is a bit longer than the SLNB recovery. I can see the future of standard for stage 3's being no CLND for 3A and 3B, just makes sense, especially after that study they did. But for now it remains.
It honestly comes down to a personal choice. Whatever you are most comfortable with. There are pros and cons both directions. Some have had the procedure and done just fine afterward, others it's more rough. Like anything in life, we are all individual beings and we can't always base decisions upon others experience because our own could be very different.
Sometimes the more we read and the more different stories we hear it gets more and more confusing. Take time to look within and see what your body tells you it is comfortable doing. We always know what's best for ourselves, sometimes we just have to shut up and listen.
All the best,
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- July 26, 2016 at 10:44 pm
Jenn,
Thank you so much for your response and perspective. I gotta say that I'm "leaning" against not doing the CLND and perhaps starting ipi therapy much like yourself. May I ask how long you have been on ipi and what dose?
Hope that you continue to do well and respond to your treatment!!
Stacy
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- July 26, 2016 at 10:59 pm
Adjuvant Ipi is 4 infusions at 10mg/kg dose 3 weeks apart. Most people only do this much (some don't make it through all 4 due to side effects causing the person to have to stop treatment), and others, like myself, go on to do maintenance doses which is still 10mg/kg but 3 months apart until I have hit 1 year of treatment. I started Ipi in December, finished my 4th main dose in February and started maintenance in May. I have 2 more maintenance infusions to go, one in August and one in November and then I will be done with Ipi as long as things continue to go well. If you go to my profile I have a good breakdown of my history, with side effects and things I have experienced along the way if that helps.
Thank you, hope everything goes well for you too!
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- July 26, 2016 at 10:59 pm
Adjuvant Ipi is 4 infusions at 10mg/kg dose 3 weeks apart. Most people only do this much (some don't make it through all 4 due to side effects causing the person to have to stop treatment), and others, like myself, go on to do maintenance doses which is still 10mg/kg but 3 months apart until I have hit 1 year of treatment. I started Ipi in December, finished my 4th main dose in February and started maintenance in May. I have 2 more maintenance infusions to go, one in August and one in November and then I will be done with Ipi as long as things continue to go well. If you go to my profile I have a good breakdown of my history, with side effects and things I have experienced along the way if that helps.
Thank you, hope everything goes well for you too!
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- July 26, 2016 at 10:59 pm
Adjuvant Ipi is 4 infusions at 10mg/kg dose 3 weeks apart. Most people only do this much (some don't make it through all 4 due to side effects causing the person to have to stop treatment), and others, like myself, go on to do maintenance doses which is still 10mg/kg but 3 months apart until I have hit 1 year of treatment. I started Ipi in December, finished my 4th main dose in February and started maintenance in May. I have 2 more maintenance infusions to go, one in August and one in November and then I will be done with Ipi as long as things continue to go well. If you go to my profile I have a good breakdown of my history, with side effects and things I have experienced along the way if that helps.
Thank you, hope everything goes well for you too!
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- July 27, 2016 at 2:34 pm
Jenn,
Thank you for your response and sharing with me your experiences. I went to your profile to check out your monthly progress. I am just so torned as to what to do. I have my meeting with my surgical oncologist to discuss with tomorrow. Also I'm trying to get feedback from MD Anderson and have them tell me what they would recommend in my case…..
Stacy
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- July 27, 2016 at 2:34 pm
Jenn,
Thank you for your response and sharing with me your experiences. I went to your profile to check out your monthly progress. I am just so torned as to what to do. I have my meeting with my surgical oncologist to discuss with tomorrow. Also I'm trying to get feedback from MD Anderson and have them tell me what they would recommend in my case…..
Stacy
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- July 27, 2016 at 2:34 pm
Jenn,
Thank you for your response and sharing with me your experiences. I went to your profile to check out your monthly progress. I am just so torned as to what to do. I have my meeting with my surgical oncologist to discuss with tomorrow. Also I'm trying to get feedback from MD Anderson and have them tell me what they would recommend in my case…..
Stacy
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- July 27, 2016 at 3:36 pm
I know it is a tough road right now with decisions that we never expect to be making. I have heard that groin dissections are much tougher to deal with and lymphedema is a very strong possibility. My SLNB was in my left groin and I still get some sensations and what not there, as you might experience from yours too. I don't have lymphedema from that, but recently I flew to see my family in another state and by the end of my 4 day vacation I came home with a left leg that looked like it belonged to an elephant. My ankles and everything were super swollen. I hadn't dealt with swelling since after surgery in November, so it never crossed my mind that I would be affected now. It took a couple of days for the swelling to go away. I cannot imagine dealing with that daily from lymphedema. Just my thoughts. Hope MD gives some good advice that helps you in your decision process.
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- July 27, 2016 at 3:36 pm
I know it is a tough road right now with decisions that we never expect to be making. I have heard that groin dissections are much tougher to deal with and lymphedema is a very strong possibility. My SLNB was in my left groin and I still get some sensations and what not there, as you might experience from yours too. I don't have lymphedema from that, but recently I flew to see my family in another state and by the end of my 4 day vacation I came home with a left leg that looked like it belonged to an elephant. My ankles and everything were super swollen. I hadn't dealt with swelling since after surgery in November, so it never crossed my mind that I would be affected now. It took a couple of days for the swelling to go away. I cannot imagine dealing with that daily from lymphedema. Just my thoughts. Hope MD gives some good advice that helps you in your decision process.
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- July 27, 2016 at 3:36 pm
I know it is a tough road right now with decisions that we never expect to be making. I have heard that groin dissections are much tougher to deal with and lymphedema is a very strong possibility. My SLNB was in my left groin and I still get some sensations and what not there, as you might experience from yours too. I don't have lymphedema from that, but recently I flew to see my family in another state and by the end of my 4 day vacation I came home with a left leg that looked like it belonged to an elephant. My ankles and everything were super swollen. I hadn't dealt with swelling since after surgery in November, so it never crossed my mind that I would be affected now. It took a couple of days for the swelling to go away. I cannot imagine dealing with that daily from lymphedema. Just my thoughts. Hope MD gives some good advice that helps you in your decision process.
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- July 27, 2016 at 6:56 pm
Hi Jenn,
Thanks again for your response. My oncologist here at KU stated today via email that he was called by MD Anderson (like I requested they do) and they agree with him that they would also recommend to me to have the CLND. I meet with my Oncologist tomorrow to discuss in great detail. Even though MDA is on the same page as my doc here, I just am not sure about having it done! I read stories that are both positive and negative and while I'm me and different from everyone else, I seemingly read more negative stories than I do positive ones. I would feel much better about having it done if it were located in underarm area and not in my groin area. I'll let you know what ultimately I will do….
Stacy
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- July 27, 2016 at 6:56 pm
Hi Jenn,
Thanks again for your response. My oncologist here at KU stated today via email that he was called by MD Anderson (like I requested they do) and they agree with him that they would also recommend to me to have the CLND. I meet with my Oncologist tomorrow to discuss in great detail. Even though MDA is on the same page as my doc here, I just am not sure about having it done! I read stories that are both positive and negative and while I'm me and different from everyone else, I seemingly read more negative stories than I do positive ones. I would feel much better about having it done if it were located in underarm area and not in my groin area. I'll let you know what ultimately I will do….
Stacy
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- July 27, 2016 at 6:56 pm
Hi Jenn,
Thanks again for your response. My oncologist here at KU stated today via email that he was called by MD Anderson (like I requested they do) and they agree with him that they would also recommend to me to have the CLND. I meet with my Oncologist tomorrow to discuss in great detail. Even though MDA is on the same page as my doc here, I just am not sure about having it done! I read stories that are both positive and negative and while I'm me and different from everyone else, I seemingly read more negative stories than I do positive ones. I would feel much better about having it done if it were located in underarm area and not in my groin area. I'll let you know what ultimately I will do….
Stacy
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- July 28, 2016 at 12:17 am
Based on the staging you put in your profile, you're stage 3A, which in my mind going through this serious surgery and dealing with the after effects from it just don't seem neccessary. If you were 3C then I would say definitely go for it. If you were 3B, like myself, I'd say either way. Just some thoughts. Let me know what you decide, I know it's hard, but it seems like you've already got a good idea of what you're comfortable with.
All the best,
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- July 28, 2016 at 12:17 am
Based on the staging you put in your profile, you're stage 3A, which in my mind going through this serious surgery and dealing with the after effects from it just don't seem neccessary. If you were 3C then I would say definitely go for it. If you were 3B, like myself, I'd say either way. Just some thoughts. Let me know what you decide, I know it's hard, but it seems like you've already got a good idea of what you're comfortable with.
All the best,
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- July 28, 2016 at 12:17 am
Based on the staging you put in your profile, you're stage 3A, which in my mind going through this serious surgery and dealing with the after effects from it just don't seem neccessary. If you were 3C then I would say definitely go for it. If you were 3B, like myself, I'd say either way. Just some thoughts. Let me know what you decide, I know it's hard, but it seems like you've already got a good idea of what you're comfortable with.
All the best,
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- July 26, 2016 at 10:44 pm
Jenn,
Thank you so much for your response and perspective. I gotta say that I'm "leaning" against not doing the CLND and perhaps starting ipi therapy much like yourself. May I ask how long you have been on ipi and what dose?
Hope that you continue to do well and respond to your treatment!!
Stacy
-
- July 26, 2016 at 10:44 pm
Jenn,
Thank you so much for your response and perspective. I gotta say that I'm "leaning" against not doing the CLND and perhaps starting ipi therapy much like yourself. May I ask how long you have been on ipi and what dose?
Hope that you continue to do well and respond to your treatment!!
Stacy
-
- July 26, 2016 at 10:02 pm
Ah, the old should I or shouldn't I CLND question. Janner is right, it is still considered the standard of care and most places will tell you to get one. But, I will say that both places I have been to (currently at UCSF melanoma center) did not recommend I get one, I had 3 out of 4 micro positive nodes after the SLNB. Was never even offered a CLND, but I don't think I would have gone through it anyway. I started Ipi adjuvant treatment and for me felt like I would just tackle any remaining cells that way. A lot of people deal with lymphedema, usually lifelong, after that type of surgery and recovery is a bit longer than the SLNB recovery. I can see the future of standard for stage 3's being no CLND for 3A and 3B, just makes sense, especially after that study they did. But for now it remains.
It honestly comes down to a personal choice. Whatever you are most comfortable with. There are pros and cons both directions. Some have had the procedure and done just fine afterward, others it's more rough. Like anything in life, we are all individual beings and we can't always base decisions upon others experience because our own could be very different.
Sometimes the more we read and the more different stories we hear it gets more and more confusing. Take time to look within and see what your body tells you it is comfortable doing. We always know what's best for ourselves, sometimes we just have to shut up and listen.
All the best,
-
- July 26, 2016 at 10:02 pm
Ah, the old should I or shouldn't I CLND question. Janner is right, it is still considered the standard of care and most places will tell you to get one. But, I will say that both places I have been to (currently at UCSF melanoma center) did not recommend I get one, I had 3 out of 4 micro positive nodes after the SLNB. Was never even offered a CLND, but I don't think I would have gone through it anyway. I started Ipi adjuvant treatment and for me felt like I would just tackle any remaining cells that way. A lot of people deal with lymphedema, usually lifelong, after that type of surgery and recovery is a bit longer than the SLNB recovery. I can see the future of standard for stage 3's being no CLND for 3A and 3B, just makes sense, especially after that study they did. But for now it remains.
It honestly comes down to a personal choice. Whatever you are most comfortable with. There are pros and cons both directions. Some have had the procedure and done just fine afterward, others it's more rough. Like anything in life, we are all individual beings and we can't always base decisions upon others experience because our own could be very different.
Sometimes the more we read and the more different stories we hear it gets more and more confusing. Take time to look within and see what your body tells you it is comfortable doing. We always know what's best for ourselves, sometimes we just have to shut up and listen.
All the best,
-
- July 26, 2016 at 10:03 pm
I think some other issues to consider on a CLND is the location needed. I am 3b with full CLND under my left arm. I lost all nerve feeling under the back of my arm due to the one nerve being removed. After one year I have regained feeling under my arm. I do not have lymphoedema. I had to have the CLND to be considered for my clinical trial. I am 45 weeks into my trial out of 50 and have had 29 chemo treatments out of 33 with IPI and NIVO. I feel fine and am NED after one year of my diagnosis.
Having the CLND was a good choice for me being the side of my chest. Having a CLND in the neck or Groin is a different story. The choice is a crap shoot, but I do know of people that have had other infected lymph nodes a year later are not doing very well. I guess you can look at it the same way breast cancer patients have double mastectomies while stage 3.
My opinion is you only have had one infected lymph node removed but you do not know if others are infected. Have the CLND to be sure you do not have more infected lymph nodes.
Tom
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- July 26, 2016 at 10:49 pm
Tom,
Thank you for your response and experience. I am really searching for answers and trying to find peace with this. I will know on Thursday afternoon when I meet with my Oncologist what the pet scan and mri shows f anything. I am seeing a medical Oncologist on August 15th to discuss my results of the BRAF testing and what my options may or may not be.
Thanks so much and hope that you continue to respond and continue to be NED!!!
Stacy
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- July 26, 2016 at 10:49 pm
Tom,
Thank you for your response and experience. I am really searching for answers and trying to find peace with this. I will know on Thursday afternoon when I meet with my Oncologist what the pet scan and mri shows f anything. I am seeing a medical Oncologist on August 15th to discuss my results of the BRAF testing and what my options may or may not be.
Thanks so much and hope that you continue to respond and continue to be NED!!!
Stacy
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- July 27, 2016 at 12:20 am
Thank you Stacy and the best of luck to you as well.
Just my two cents. I had no fear about my CLND surgery. Yes it was uncomfortable but not painful. I had my drain in for 2 weeks and it may have taken about a month to fully recover, but it did not hurt (me). My scars are not bad at all and I am not ashamed of them one bit. For me I have to do everything in my power to stay alive and healthy. My Surgical Onc warned me before hand that if I where to have a positive SLND I would need to have a CLND two weeks later. I placed my faith in God and trust in my doctors.
Best advice is if you do have the surgey. Keep the wound clean and dry. Do not do anything to get it infected.
Tom
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- July 27, 2016 at 12:20 am
Thank you Stacy and the best of luck to you as well.
Just my two cents. I had no fear about my CLND surgery. Yes it was uncomfortable but not painful. I had my drain in for 2 weeks and it may have taken about a month to fully recover, but it did not hurt (me). My scars are not bad at all and I am not ashamed of them one bit. For me I have to do everything in my power to stay alive and healthy. My Surgical Onc warned me before hand that if I where to have a positive SLND I would need to have a CLND two weeks later. I placed my faith in God and trust in my doctors.
Best advice is if you do have the surgey. Keep the wound clean and dry. Do not do anything to get it infected.
Tom
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- July 27, 2016 at 12:20 am
Thank you Stacy and the best of luck to you as well.
Just my two cents. I had no fear about my CLND surgery. Yes it was uncomfortable but not painful. I had my drain in for 2 weeks and it may have taken about a month to fully recover, but it did not hurt (me). My scars are not bad at all and I am not ashamed of them one bit. For me I have to do everything in my power to stay alive and healthy. My Surgical Onc warned me before hand that if I where to have a positive SLND I would need to have a CLND two weeks later. I placed my faith in God and trust in my doctors.
Best advice is if you do have the surgey. Keep the wound clean and dry. Do not do anything to get it infected.
Tom
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- July 26, 2016 at 10:49 pm
Tom,
Thank you for your response and experience. I am really searching for answers and trying to find peace with this. I will know on Thursday afternoon when I meet with my Oncologist what the pet scan and mri shows f anything. I am seeing a medical Oncologist on August 15th to discuss my results of the BRAF testing and what my options may or may not be.
Thanks so much and hope that you continue to respond and continue to be NED!!!
Stacy
-
- July 26, 2016 at 10:03 pm
I think some other issues to consider on a CLND is the location needed. I am 3b with full CLND under my left arm. I lost all nerve feeling under the back of my arm due to the one nerve being removed. After one year I have regained feeling under my arm. I do not have lymphoedema. I had to have the CLND to be considered for my clinical trial. I am 45 weeks into my trial out of 50 and have had 29 chemo treatments out of 33 with IPI and NIVO. I feel fine and am NED after one year of my diagnosis.
Having the CLND was a good choice for me being the side of my chest. Having a CLND in the neck or Groin is a different story. The choice is a crap shoot, but I do know of people that have had other infected lymph nodes a year later are not doing very well. I guess you can look at it the same way breast cancer patients have double mastectomies while stage 3.
My opinion is you only have had one infected lymph node removed but you do not know if others are infected. Have the CLND to be sure you do not have more infected lymph nodes.
Tom
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- July 26, 2016 at 10:03 pm
I think some other issues to consider on a CLND is the location needed. I am 3b with full CLND under my left arm. I lost all nerve feeling under the back of my arm due to the one nerve being removed. After one year I have regained feeling under my arm. I do not have lymphoedema. I had to have the CLND to be considered for my clinical trial. I am 45 weeks into my trial out of 50 and have had 29 chemo treatments out of 33 with IPI and NIVO. I feel fine and am NED after one year of my diagnosis.
Having the CLND was a good choice for me being the side of my chest. Having a CLND in the neck or Groin is a different story. The choice is a crap shoot, but I do know of people that have had other infected lymph nodes a year later are not doing very well. I guess you can look at it the same way breast cancer patients have double mastectomies while stage 3.
My opinion is you only have had one infected lymph node removed but you do not know if others are infected. Have the CLND to be sure you do not have more infected lymph nodes.
Tom
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- July 27, 2016 at 12:45 am
Hi Stacy. This is such a hotly debated topic, and its truly only your decision to make. There’s a German study that suggests there’s no significant difference in outcome with a CLND vs monitoring with ultrasound, which is totally an option. Best advice is do your research and go with your gut.I have some very honest pics of my incision from my CLND on my blog. If you’d like to see what you can expect, take a peek.
Lauren
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- July 27, 2016 at 12:45 am
Hi Stacy. This is such a hotly debated topic, and its truly only your decision to make. There’s a German study that suggests there’s no significant difference in outcome with a CLND vs monitoring with ultrasound, which is totally an option. Best advice is do your research and go with your gut.I have some very honest pics of my incision from my CLND on my blog. If you’d like to see what you can expect, take a peek.
Lauren
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- July 27, 2016 at 12:04 pm
Stacy,
I was diagnosed Stage 3a, my melanoma was 1.3 mm thick, Clarke III, mitosis rate 0-1 and superficial spreading. I had 1 lymph node that contained melanoma contained within the capillaries (I do not know how much melanoma was in the lymph node). I did have CLND done under my arm pit. I had 17 lymph nodes removed and none had melanoma nor did any tissue have melanoma. At the time I had CLND I did not realize it was an option to have it or not. I just went with it. I do know now I feel much better knowing I had the CLND and everything was negative. Again, it's just my personal opinion. The CLND was not that bad for me. I did have a drain in but I was able go to work the next day. I still have some numbness in my arm pit.
Since I only had 1 lymph node positive, I needed to have CLND to see if I qualified for S1404 clinical trial. Since I did not have 2 lymph nodes positive, I did not qualify for the clinical trial. Dr. Kirkwood at HIllman Cancer Center in Pittsburgh told me my only option was interferon and referred me back to my medical oncologist closer to my home. My medical oncologist did not want to give me interferon, nor did I want to take it. He recommeded a 2nd opinion and I saw Dr. Schucter in Philadelphia and she recommeded no treatment and asked me how I felt about that. I told her I was unsettled with no treatment and she sent a pre-authorization to my insurance company to see if they would cover 3 ml of Yervoy and in less than a week, I got the call that it was approved and I have my first infustion on August 2nd.
Good luck with your decision and keep us posted.
Laura
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- July 27, 2016 at 12:04 pm
Stacy,
I was diagnosed Stage 3a, my melanoma was 1.3 mm thick, Clarke III, mitosis rate 0-1 and superficial spreading. I had 1 lymph node that contained melanoma contained within the capillaries (I do not know how much melanoma was in the lymph node). I did have CLND done under my arm pit. I had 17 lymph nodes removed and none had melanoma nor did any tissue have melanoma. At the time I had CLND I did not realize it was an option to have it or not. I just went with it. I do know now I feel much better knowing I had the CLND and everything was negative. Again, it's just my personal opinion. The CLND was not that bad for me. I did have a drain in but I was able go to work the next day. I still have some numbness in my arm pit.
Since I only had 1 lymph node positive, I needed to have CLND to see if I qualified for S1404 clinical trial. Since I did not have 2 lymph nodes positive, I did not qualify for the clinical trial. Dr. Kirkwood at HIllman Cancer Center in Pittsburgh told me my only option was interferon and referred me back to my medical oncologist closer to my home. My medical oncologist did not want to give me interferon, nor did I want to take it. He recommeded a 2nd opinion and I saw Dr. Schucter in Philadelphia and she recommeded no treatment and asked me how I felt about that. I told her I was unsettled with no treatment and she sent a pre-authorization to my insurance company to see if they would cover 3 ml of Yervoy and in less than a week, I got the call that it was approved and I have my first infustion on August 2nd.
Good luck with your decision and keep us posted.
Laura
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- July 27, 2016 at 5:51 pm
Stacy,
I understand your CLND would be the groin, and as noted before, it's a very different procedure and recovery than the axilla (armpit) like I had too. But this message above from Laura is very insightful. Skipping the CLND, and fighting for Yervoy at the reduced dose of 3mg looks like a real winner for a Stage 3 diagnosis.
Gary
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- July 27, 2016 at 5:51 pm
Stacy,
I understand your CLND would be the groin, and as noted before, it's a very different procedure and recovery than the axilla (armpit) like I had too. But this message above from Laura is very insightful. Skipping the CLND, and fighting for Yervoy at the reduced dose of 3mg looks like a real winner for a Stage 3 diagnosis.
Gary
-
- July 27, 2016 at 5:51 pm
Stacy,
I understand your CLND would be the groin, and as noted before, it's a very different procedure and recovery than the axilla (armpit) like I had too. But this message above from Laura is very insightful. Skipping the CLND, and fighting for Yervoy at the reduced dose of 3mg looks like a real winner for a Stage 3 diagnosis.
Gary
-
- July 27, 2016 at 12:04 pm
Stacy,
I was diagnosed Stage 3a, my melanoma was 1.3 mm thick, Clarke III, mitosis rate 0-1 and superficial spreading. I had 1 lymph node that contained melanoma contained within the capillaries (I do not know how much melanoma was in the lymph node). I did have CLND done under my arm pit. I had 17 lymph nodes removed and none had melanoma nor did any tissue have melanoma. At the time I had CLND I did not realize it was an option to have it or not. I just went with it. I do know now I feel much better knowing I had the CLND and everything was negative. Again, it's just my personal opinion. The CLND was not that bad for me. I did have a drain in but I was able go to work the next day. I still have some numbness in my arm pit.
Since I only had 1 lymph node positive, I needed to have CLND to see if I qualified for S1404 clinical trial. Since I did not have 2 lymph nodes positive, I did not qualify for the clinical trial. Dr. Kirkwood at HIllman Cancer Center in Pittsburgh told me my only option was interferon and referred me back to my medical oncologist closer to my home. My medical oncologist did not want to give me interferon, nor did I want to take it. He recommeded a 2nd opinion and I saw Dr. Schucter in Philadelphia and she recommeded no treatment and asked me how I felt about that. I told her I was unsettled with no treatment and she sent a pre-authorization to my insurance company to see if they would cover 3 ml of Yervoy and in less than a week, I got the call that it was approved and I have my first infustion on August 2nd.
Good luck with your decision and keep us posted.
Laura
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- July 27, 2016 at 12:45 am
Hi Stacy. This is such a hotly debated topic, and its truly only your decision to make. There’s a German study that suggests there’s no significant difference in outcome with a CLND vs monitoring with ultrasound, which is totally an option. Best advice is do your research and go with your gut.I have some very honest pics of my incision from my CLND on my blog. If you’d like to see what you can expect, take a peek.
Lauren
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- July 27, 2016 at 7:05 pm
Laura and Gary, thank you also for your responses to my ongoing debate in my head.
I heard back from my oncologist today via email that he was contacted by MD Anderson (like I requested that they do) and MDA stated to him that they would also recommend to me to have the CLND as well. There's a part of me that hoped that MDA would not of held that position quite frankly. I'm reading alot of positive and negative experiences with the procedure but it seems like I'm reading more positive experiences with the axillary arm procedure than I am about the groin procedure. That's what is really causing my hesitation about all of this. I meet with my oncologist tomorrow afternoon to discuss this and everything else. I'll be sure to post how that meeting went and thanks again for your very important feedback!
Stacy
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- July 28, 2016 at 12:18 am
Stacy, I was the one from Omaha from the other day, just wanting to add what my thoughts were. I had mine on my calf, very deep, ulcerated nodular melanoma. First let me start off by saying I was told by my Melanoma surgeon with 30+ years exp, plus being a professor and my Mel Onc that melanoma is THE MOST UNPREDICTABLE kind of cancer there is. I also was slnb positive with micro as well. This means either way, this thing is on the move. It is either going to spread by 2 means, blood or lymph. Since it's already travelling through the lymph channels and has been for who knows how long, it could easily keep going. I knew going into this surgery that it was a big deal. My surgeon and his nurse tried to prepare me. The groin is a big deal. If they have to move the muscle it is a bigger deal. The surgery and recovery were hard for me, I'm not going to lie. I got an infection so that gave me 5 days at first and then another 4 days for the infection of hospital time. My drains also stayed in for quite awhile. I guess I have a lot of lymph fluid. I did get Lymphadema and it has changed my life. But I'm still alive and I'm still stage 3. If I could go back and change it, I wouldn't. Even with Lymphadema. I decided I can't control whether or not this spreads but I'm sure going to fight like hell. I have 4 boys to worry about. Start reading on here for stage 4. Search for Artie. Stage 4 people are in for a fight for their lives, some are really suffering. I thought I needed to get the cancer out of my body as quick as possible for a better chance. Think about this, I am a fast filler meaning when I take my compression off I immediately begin to fill up with lymph fluid. This stuff is moving through your body constantly. Basically what I'm trying to say is your life has already changed…it will never be the same. It is up to you to get the most up to date best treatment in order to fight this and I believe the only way to go is the clnd. jmo By the way, your ? from the other day about me ending ipi, that was all my trial called for. My experience with it was just fine.
Rachel
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- July 28, 2016 at 4:17 pm
It becomes more unpredictable in late stages, 3 and 4. With early stages the chances are very much on one's side that they won't deal with melanoma again. You can't judge based on this forum, you'll only read the worst cases or most advanced or scariest because those are the people that need to come here for answers and support. The MAJORITY of early stage melanoma patients are NOT on this forum because they DON'T have melanoma anymore and never will. They're just living life like usual. Gotta remember that 🙂
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- July 28, 2016 at 4:17 pm
It becomes more unpredictable in late stages, 3 and 4. With early stages the chances are very much on one's side that they won't deal with melanoma again. You can't judge based on this forum, you'll only read the worst cases or most advanced or scariest because those are the people that need to come here for answers and support. The MAJORITY of early stage melanoma patients are NOT on this forum because they DON'T have melanoma anymore and never will. They're just living life like usual. Gotta remember that 🙂
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- July 28, 2016 at 4:17 pm
It becomes more unpredictable in late stages, 3 and 4. With early stages the chances are very much on one's side that they won't deal with melanoma again. You can't judge based on this forum, you'll only read the worst cases or most advanced or scariest because those are the people that need to come here for answers and support. The MAJORITY of early stage melanoma patients are NOT on this forum because they DON'T have melanoma anymore and never will. They're just living life like usual. Gotta remember that 🙂
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- July 28, 2016 at 12:18 am
Stacy, I was the one from Omaha from the other day, just wanting to add what my thoughts were. I had mine on my calf, very deep, ulcerated nodular melanoma. First let me start off by saying I was told by my Melanoma surgeon with 30+ years exp, plus being a professor and my Mel Onc that melanoma is THE MOST UNPREDICTABLE kind of cancer there is. I also was slnb positive with micro as well. This means either way, this thing is on the move. It is either going to spread by 2 means, blood or lymph. Since it's already travelling through the lymph channels and has been for who knows how long, it could easily keep going. I knew going into this surgery that it was a big deal. My surgeon and his nurse tried to prepare me. The groin is a big deal. If they have to move the muscle it is a bigger deal. The surgery and recovery were hard for me, I'm not going to lie. I got an infection so that gave me 5 days at first and then another 4 days for the infection of hospital time. My drains also stayed in for quite awhile. I guess I have a lot of lymph fluid. I did get Lymphadema and it has changed my life. But I'm still alive and I'm still stage 3. If I could go back and change it, I wouldn't. Even with Lymphadema. I decided I can't control whether or not this spreads but I'm sure going to fight like hell. I have 4 boys to worry about. Start reading on here for stage 4. Search for Artie. Stage 4 people are in for a fight for their lives, some are really suffering. I thought I needed to get the cancer out of my body as quick as possible for a better chance. Think about this, I am a fast filler meaning when I take my compression off I immediately begin to fill up with lymph fluid. This stuff is moving through your body constantly. Basically what I'm trying to say is your life has already changed…it will never be the same. It is up to you to get the most up to date best treatment in order to fight this and I believe the only way to go is the clnd. jmo By the way, your ? from the other day about me ending ipi, that was all my trial called for. My experience with it was just fine.
Rachel
-
- July 28, 2016 at 12:18 am
Stacy, I was the one from Omaha from the other day, just wanting to add what my thoughts were. I had mine on my calf, very deep, ulcerated nodular melanoma. First let me start off by saying I was told by my Melanoma surgeon with 30+ years exp, plus being a professor and my Mel Onc that melanoma is THE MOST UNPREDICTABLE kind of cancer there is. I also was slnb positive with micro as well. This means either way, this thing is on the move. It is either going to spread by 2 means, blood or lymph. Since it's already travelling through the lymph channels and has been for who knows how long, it could easily keep going. I knew going into this surgery that it was a big deal. My surgeon and his nurse tried to prepare me. The groin is a big deal. If they have to move the muscle it is a bigger deal. The surgery and recovery were hard for me, I'm not going to lie. I got an infection so that gave me 5 days at first and then another 4 days for the infection of hospital time. My drains also stayed in for quite awhile. I guess I have a lot of lymph fluid. I did get Lymphadema and it has changed my life. But I'm still alive and I'm still stage 3. If I could go back and change it, I wouldn't. Even with Lymphadema. I decided I can't control whether or not this spreads but I'm sure going to fight like hell. I have 4 boys to worry about. Start reading on here for stage 4. Search for Artie. Stage 4 people are in for a fight for their lives, some are really suffering. I thought I needed to get the cancer out of my body as quick as possible for a better chance. Think about this, I am a fast filler meaning when I take my compression off I immediately begin to fill up with lymph fluid. This stuff is moving through your body constantly. Basically what I'm trying to say is your life has already changed…it will never be the same. It is up to you to get the most up to date best treatment in order to fight this and I believe the only way to go is the clnd. jmo By the way, your ? from the other day about me ending ipi, that was all my trial called for. My experience with it was just fine.
Rachel
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- July 27, 2016 at 7:05 pm
Laura and Gary, thank you also for your responses to my ongoing debate in my head.
I heard back from my oncologist today via email that he was contacted by MD Anderson (like I requested that they do) and MDA stated to him that they would also recommend to me to have the CLND as well. There's a part of me that hoped that MDA would not of held that position quite frankly. I'm reading alot of positive and negative experiences with the procedure but it seems like I'm reading more positive experiences with the axillary arm procedure than I am about the groin procedure. That's what is really causing my hesitation about all of this. I meet with my oncologist tomorrow afternoon to discuss this and everything else. I'll be sure to post how that meeting went and thanks again for your very important feedback!
Stacy
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- July 27, 2016 at 7:05 pm
Laura and Gary, thank you also for your responses to my ongoing debate in my head.
I heard back from my oncologist today via email that he was contacted by MD Anderson (like I requested that they do) and MDA stated to him that they would also recommend to me to have the CLND as well. There's a part of me that hoped that MDA would not of held that position quite frankly. I'm reading alot of positive and negative experiences with the procedure but it seems like I'm reading more positive experiences with the axillary arm procedure than I am about the groin procedure. That's what is really causing my hesitation about all of this. I meet with my oncologist tomorrow afternoon to discuss this and everything else. I'll be sure to post how that meeting went and thanks again for your very important feedback!
Stacy
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Tagged: cutaneous melanoma
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