› Forums › General Melanoma Community › Stage 3a – treatment options, CLND vs ultrasound
- This topic has 45 replies, 7 voices, and was last updated 8 years, 4 months ago by
ed williams.
- Post
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- December 10, 2015 at 7:45 pm
Hi everyone,
I am 33 yrs old newly diagnosed stage 3a. I've been struggling with many decisions and finding my path through the "mad rush" phase of this diagnosis and would appreciate any input from this supportive community.
late August 2015 – mole (left buttock) excised by derm. Mole was not new, but had seemed to change during pregnancy, kept putting off getting it checked (busy with new baby and assumed (and also was told) it was normal to have some moles change while pregnant) and finally went in August.
Sep 2015 – confirmed melanoma. Superficial spreading. 0.92mm non ulcerated, mitosis 5. Referred to major cancer centre melanoma oncologist.
Oct 2015 – WLE and SNB left groin. Margins clear. 1/1 nodes positive for micromets 0.34mm. Surg onc saw no other clinically suspicious nodes or concerns.
Nov/Dec 2015 – Baseline CTs head/chest abdo pelvis all clear. Stage 3a. Recommended to be followed by ultrasound q3-4months. Offered interferon, or Trial available: randomized interferon vs keytruda but requires full completion node dissection, (and it's unclear if requires >2 nodes involved???).
For peace of mind we are in the process of getting a second opinion from Johns Hopkins and have access to Memorial Sloan Kettering if we want an additional opinion. The other major cancer centre in our city would likely push for surgery but they are a bit more conservative than our centre which was part of the MSLTII trial. I trust and respect my doctors and feel safe in their care, but I can't help but wonder what the other side of this argument might be. I have a medical background and a good understanding of the research that exists. I understand the recent German paper which found no difference in overall survival, yet the question of local disease control is raised.
It's a very tough decision, wondering if you're at the forefront of a big practice change, or if there is truly is value in doing the CLND in the case of 3a (despite the quality of life challenges which influence my decision). I also wonder if down the road, what role the lymphatic system will play for the newer immunotherapy drugs, and in that case, would retaining the nodes be the right way to go.
On top of this we are in the midst of trying to preserve my fertility via egg retrieval given the chance I may choose interferon (or additional therapies in the future, in that case it would be a peace of mind thing as well, as we would like to have additional children down the road). On that note as well, our medical oncologist has assured me that there is no evidence to link pregnancy with melanoma, but I have read some anecdotal cases that might contradict that. Is it advised to be NED before trying to conceive again?
I've been advised by loved ones (and my heart tells me as well) that there is no right or wrong decision, just the decision that is right for you… I trust medicine, I trust research but I do know that it has to feel right. I have a beautiful baby girl and loving family and I just do not want to leave this life early. I am so scared.
Looking for advice/input or if anyone is currently going the ultrasound route and what your experience has been. My apologies for the long post. And thank you for listening…
- Replies
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- December 10, 2015 at 8:11 pm
HI Jessica, I can only offer you my personal experience as my situation is very similar to yours. Diagnosed stage 3a in august 2014 with superficial spreading melanoma on right calf, SLNB with one of the four groin nodes removed possitive with .9mm micromet. I chose watch and wait with ultrasound. Go back for third ultrasound on Jan. 6, so far so good, NED almost a year and a half…whatever you chose will be the right decision , just educate yourself on the CLND as imo in our case it's a bit morbid and offers no benefit to long term serval… Many discussions here about that, just search the board…best of luck to you
Craig
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- December 10, 2015 at 8:11 pm
HI Jessica, I can only offer you my personal experience as my situation is very similar to yours. Diagnosed stage 3a in august 2014 with superficial spreading melanoma on right calf, SLNB with one of the four groin nodes removed possitive with .9mm micromet. I chose watch and wait with ultrasound. Go back for third ultrasound on Jan. 6, so far so good, NED almost a year and a half…whatever you chose will be the right decision , just educate yourself on the CLND as imo in our case it's a bit morbid and offers no benefit to long term serval… Many discussions here about that, just search the board…best of luck to you
Craig
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- December 10, 2015 at 8:32 pm
Craig thank you so much for your quick response, and it is very helpful. I'm glad to hear you're doing well…
I've heard and read the same thing, that in the case of 3a, it's an invasive surgery with high morbidity and long term effects. And it's exactly how my surg onc feels. Why go through such a morbid procedure when there is a good chance of no recurrence. And of course if there is no difference in survival.
Will be interesting to see the full results of the larger trial when they are eventually released.
Ill continue to read and research but it's comforting of course to hear of others in a similar situation.
Thanks again very kind of you to respond.
Jessica
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- December 10, 2015 at 10:45 pm
Hi Jessica,
I was in a very similar scenario almost 5 years ago. I was 28 with a new baby and strange looking mole on my finger. I, too, was told changes were normal, and didn't get to the derm as fast as I should have trying to care for a new baby. It took me a while to get past that guilt, but no choice but to move on. Anyway, I also had a micromet in one node. I actually read somewhere (no clue where bc I did a lot of research at the time) that it's common for postpartum women in our age group to have a more aggressive original diagnosis but a better prognosis. Anyway, I chose to do the MSLT-II trial. For me I thought it was the perfect scenario = no surgery plus close monitoring. At the 18 month mark unfortunately I did have a recurrence in a lymph node. I then had the full dissection and have been all clear for three years.
Now I always hesitate to share my story bc well it sucks, but I've been told that I'm way in the minority. The early research on the MSLT-II is showing that it's not beneficial to have the CLND. This according to Northwestern and University of Chicago. I can't say that I regret my decision and maybe even it helped my long term prognosis to have those lymph nodes catch that cancer. Here's the hard part for me, it was mentally very tough of course, but unfortunately now that I am 3C the advice on having another child is a bit different. I've had Drs make different recommendations but they all agreed on at least two years of NED (if at all), which for me didn't come until 3 1/2 years after my original diagnosis. We aren't sure if having another baby is the right decision for us but part of me will wonder if I had stayed at 3a would it have been different.
Again I know that I am one of a few and I don't want to be negative at all. I wish I would have given more thought to having a second child, bc at the time with such a young baby at home I thought I wouldn't mind if he was my only child. Maybe it would have worked out the same. It's all so unpredictable. Hope the best for you.
Caitlin
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- December 20, 2015 at 1:06 am
Hi Caitlin,
Apologies it's taken me this long to respond. Thank you for sharing your story and I don't find it negative at all 🙂 I too feel it's the best decision for me at this time, which is really all we can hope for in terms of being at peace and moving forward. Definitely not something you anticipate encountering as a young mother.
I wish you all the best as well. Time will tell if there's a sibling for our daughter in the future, but for now we feel very blessed to have one who is happy and healthy..
Thanks again.
Jessica
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- December 20, 2015 at 1:06 am
Hi Caitlin,
Apologies it's taken me this long to respond. Thank you for sharing your story and I don't find it negative at all 🙂 I too feel it's the best decision for me at this time, which is really all we can hope for in terms of being at peace and moving forward. Definitely not something you anticipate encountering as a young mother.
I wish you all the best as well. Time will tell if there's a sibling for our daughter in the future, but for now we feel very blessed to have one who is happy and healthy..
Thanks again.
Jessica
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- December 20, 2015 at 1:06 am
Hi Caitlin,
Apologies it's taken me this long to respond. Thank you for sharing your story and I don't find it negative at all 🙂 I too feel it's the best decision for me at this time, which is really all we can hope for in terms of being at peace and moving forward. Definitely not something you anticipate encountering as a young mother.
I wish you all the best as well. Time will tell if there's a sibling for our daughter in the future, but for now we feel very blessed to have one who is happy and healthy..
Thanks again.
Jessica
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- December 10, 2015 at 10:45 pm
Hi Jessica,
I was in a very similar scenario almost 5 years ago. I was 28 with a new baby and strange looking mole on my finger. I, too, was told changes were normal, and didn't get to the derm as fast as I should have trying to care for a new baby. It took me a while to get past that guilt, but no choice but to move on. Anyway, I also had a micromet in one node. I actually read somewhere (no clue where bc I did a lot of research at the time) that it's common for postpartum women in our age group to have a more aggressive original diagnosis but a better prognosis. Anyway, I chose to do the MSLT-II trial. For me I thought it was the perfect scenario = no surgery plus close monitoring. At the 18 month mark unfortunately I did have a recurrence in a lymph node. I then had the full dissection and have been all clear for three years.
Now I always hesitate to share my story bc well it sucks, but I've been told that I'm way in the minority. The early research on the MSLT-II is showing that it's not beneficial to have the CLND. This according to Northwestern and University of Chicago. I can't say that I regret my decision and maybe even it helped my long term prognosis to have those lymph nodes catch that cancer. Here's the hard part for me, it was mentally very tough of course, but unfortunately now that I am 3C the advice on having another child is a bit different. I've had Drs make different recommendations but they all agreed on at least two years of NED (if at all), which for me didn't come until 3 1/2 years after my original diagnosis. We aren't sure if having another baby is the right decision for us but part of me will wonder if I had stayed at 3a would it have been different.
Again I know that I am one of a few and I don't want to be negative at all. I wish I would have given more thought to having a second child, bc at the time with such a young baby at home I thought I wouldn't mind if he was my only child. Maybe it would have worked out the same. It's all so unpredictable. Hope the best for you.
Caitlin
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- December 10, 2015 at 10:45 pm
Hi Jessica,
I was in a very similar scenario almost 5 years ago. I was 28 with a new baby and strange looking mole on my finger. I, too, was told changes were normal, and didn't get to the derm as fast as I should have trying to care for a new baby. It took me a while to get past that guilt, but no choice but to move on. Anyway, I also had a micromet in one node. I actually read somewhere (no clue where bc I did a lot of research at the time) that it's common for postpartum women in our age group to have a more aggressive original diagnosis but a better prognosis. Anyway, I chose to do the MSLT-II trial. For me I thought it was the perfect scenario = no surgery plus close monitoring. At the 18 month mark unfortunately I did have a recurrence in a lymph node. I then had the full dissection and have been all clear for three years.
Now I always hesitate to share my story bc well it sucks, but I've been told that I'm way in the minority. The early research on the MSLT-II is showing that it's not beneficial to have the CLND. This according to Northwestern and University of Chicago. I can't say that I regret my decision and maybe even it helped my long term prognosis to have those lymph nodes catch that cancer. Here's the hard part for me, it was mentally very tough of course, but unfortunately now that I am 3C the advice on having another child is a bit different. I've had Drs make different recommendations but they all agreed on at least two years of NED (if at all), which for me didn't come until 3 1/2 years after my original diagnosis. We aren't sure if having another baby is the right decision for us but part of me will wonder if I had stayed at 3a would it have been different.
Again I know that I am one of a few and I don't want to be negative at all. I wish I would have given more thought to having a second child, bc at the time with such a young baby at home I thought I wouldn't mind if he was my only child. Maybe it would have worked out the same. It's all so unpredictable. Hope the best for you.
Caitlin
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- December 10, 2015 at 8:32 pm
Craig thank you so much for your quick response, and it is very helpful. I'm glad to hear you're doing well…
I've heard and read the same thing, that in the case of 3a, it's an invasive surgery with high morbidity and long term effects. And it's exactly how my surg onc feels. Why go through such a morbid procedure when there is a good chance of no recurrence. And of course if there is no difference in survival.
Will be interesting to see the full results of the larger trial when they are eventually released.
Ill continue to read and research but it's comforting of course to hear of others in a similar situation.
Thanks again very kind of you to respond.
Jessica
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- December 10, 2015 at 8:32 pm
Craig thank you so much for your quick response, and it is very helpful. I'm glad to hear you're doing well…
I've heard and read the same thing, that in the case of 3a, it's an invasive surgery with high morbidity and long term effects. And it's exactly how my surg onc feels. Why go through such a morbid procedure when there is a good chance of no recurrence. And of course if there is no difference in survival.
Will be interesting to see the full results of the larger trial when they are eventually released.
Ill continue to read and research but it's comforting of course to hear of others in a similar situation.
Thanks again very kind of you to respond.
Jessica
-
- December 10, 2015 at 8:11 pm
HI Jessica, I can only offer you my personal experience as my situation is very similar to yours. Diagnosed stage 3a in august 2014 with superficial spreading melanoma on right calf, SLNB with one of the four groin nodes removed possitive with .9mm micromet. I chose watch and wait with ultrasound. Go back for third ultrasound on Jan. 6, so far so good, NED almost a year and a half…whatever you chose will be the right decision , just educate yourself on the CLND as imo in our case it's a bit morbid and offers no benefit to long term serval… Many discussions here about that, just search the board…best of luck to you
Craig
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- December 11, 2015 at 12:10 am
Hi Jessicaerinoz, keeping your lymph nodes does make a lot of sense. The CTLA-4 drug ipi works in the lymph nodes to take the brakes off your immune system, T-cells are made in the lymph nodes as I understand things. Immunotherapy drugs are changing the landscape for those of us that progress to stage 4 metastatic disease, and keeping the nodes intact makes a lot of sense plus the Germany study that was presented at ASCO 2015 which supports this. I was watching a webinar a few months back where the panel of oncologist and surgeons were talking about when to do CLND and when not to, Dr.Mario Sznol made the very point that keeping the lymph nodes may be very important with Immunotherapy treatments. Stage 3 really sucks when it comes to good options that work, you either have really bad % of the treatment making any difference or in the case of Ipi at 10mg/kg very high risks of grade 3 or 4 side effects and if I remember correctly there were 5 deaths in the study that they used to get the drug approved for stage 3 patients. If you want some good places to go for current research, I find looking up any thing from ASCO or Onclive on Melanoma is good. Some Big names in the research field are Dr. Omid Hamib of the Angeles Clinic, Dr. Jeffrey Weber, Dr. Michael Postow of Memorial Sloan Kettering,Dr.Sanjiv. S. Agarwala of Temple Univ., Dr. Jedd Wolchok of Memorial Sloan Kettering. I find a lot of their Oncology meeting on Youtube by just searching there names and Melanoma or Immunotherapy or ASCO. Wishing you the best in your journey!!! Ed
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- December 11, 2015 at 12:10 am
Hi Jessicaerinoz, keeping your lymph nodes does make a lot of sense. The CTLA-4 drug ipi works in the lymph nodes to take the brakes off your immune system, T-cells are made in the lymph nodes as I understand things. Immunotherapy drugs are changing the landscape for those of us that progress to stage 4 metastatic disease, and keeping the nodes intact makes a lot of sense plus the Germany study that was presented at ASCO 2015 which supports this. I was watching a webinar a few months back where the panel of oncologist and surgeons were talking about when to do CLND and when not to, Dr.Mario Sznol made the very point that keeping the lymph nodes may be very important with Immunotherapy treatments. Stage 3 really sucks when it comes to good options that work, you either have really bad % of the treatment making any difference or in the case of Ipi at 10mg/kg very high risks of grade 3 or 4 side effects and if I remember correctly there were 5 deaths in the study that they used to get the drug approved for stage 3 patients. If you want some good places to go for current research, I find looking up any thing from ASCO or Onclive on Melanoma is good. Some Big names in the research field are Dr. Omid Hamib of the Angeles Clinic, Dr. Jeffrey Weber, Dr. Michael Postow of Memorial Sloan Kettering,Dr.Sanjiv. S. Agarwala of Temple Univ., Dr. Jedd Wolchok of Memorial Sloan Kettering. I find a lot of their Oncology meeting on Youtube by just searching there names and Melanoma or Immunotherapy or ASCO. Wishing you the best in your journey!!! Ed
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- December 11, 2015 at 12:10 am
Hi Jessicaerinoz, keeping your lymph nodes does make a lot of sense. The CTLA-4 drug ipi works in the lymph nodes to take the brakes off your immune system, T-cells are made in the lymph nodes as I understand things. Immunotherapy drugs are changing the landscape for those of us that progress to stage 4 metastatic disease, and keeping the nodes intact makes a lot of sense plus the Germany study that was presented at ASCO 2015 which supports this. I was watching a webinar a few months back where the panel of oncologist and surgeons were talking about when to do CLND and when not to, Dr.Mario Sznol made the very point that keeping the lymph nodes may be very important with Immunotherapy treatments. Stage 3 really sucks when it comes to good options that work, you either have really bad % of the treatment making any difference or in the case of Ipi at 10mg/kg very high risks of grade 3 or 4 side effects and if I remember correctly there were 5 deaths in the study that they used to get the drug approved for stage 3 patients. If you want some good places to go for current research, I find looking up any thing from ASCO or Onclive on Melanoma is good. Some Big names in the research field are Dr. Omid Hamib of the Angeles Clinic, Dr. Jeffrey Weber, Dr. Michael Postow of Memorial Sloan Kettering,Dr.Sanjiv. S. Agarwala of Temple Univ., Dr. Jedd Wolchok of Memorial Sloan Kettering. I find a lot of their Oncology meeting on Youtube by just searching there names and Melanoma or Immunotherapy or ASCO. Wishing you the best in your journey!!! Ed
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- December 20, 2015 at 1:10 am
Dear Ed,
Thank you kindly for your thoughtful response. And for all the info/links as well.
I can't help but agree with you based on the research I've done thus far..
as for the ipi – I wasn't given the option. Only interferon. Ed are you in Canada as well? Is ipi only approved in USA for stage 3?
I will take a look at the Asco and onclive feeds as you suggested.
Many thanks for taking the time.
jessica
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- December 20, 2015 at 1:10 am
Dear Ed,
Thank you kindly for your thoughtful response. And for all the info/links as well.
I can't help but agree with you based on the research I've done thus far..
as for the ipi – I wasn't given the option. Only interferon. Ed are you in Canada as well? Is ipi only approved in USA for stage 3?
I will take a look at the Asco and onclive feeds as you suggested.
Many thanks for taking the time.
jessica
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- December 20, 2015 at 1:10 am
Dear Ed,
Thank you kindly for your thoughtful response. And for all the info/links as well.
I can't help but agree with you based on the research I've done thus far..
as for the ipi – I wasn't given the option. Only interferon. Ed are you in Canada as well? Is ipi only approved in USA for stage 3?
I will take a look at the Asco and onclive feeds as you suggested.
Many thanks for taking the time.
jessica
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- December 26, 2015 at 9:54 pm
Yes, I live in a little town beside Ottawa (Russell) and I have been going to the General hospital in Ottawa for the last 3.5 years. I have been in BMS trial called checkmate 67 for the last 2 years. Wishing you the best in your journey!!! Ed
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- December 26, 2015 at 9:54 pm
Yes, I live in a little town beside Ottawa (Russell) and I have been going to the General hospital in Ottawa for the last 3.5 years. I have been in BMS trial called checkmate 67 for the last 2 years. Wishing you the best in your journey!!! Ed
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- December 26, 2015 at 9:54 pm
Yes, I live in a little town beside Ottawa (Russell) and I have been going to the General hospital in Ottawa for the last 3.5 years. I have been in BMS trial called checkmate 67 for the last 2 years. Wishing you the best in your journey!!! Ed
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- December 12, 2015 at 5:23 pm
I decided to have the clnd because I’ve read of stories of people having more infected nodes. I had a total of 11 taken out and I felt pretty good 4 days after surgery.(all negative) Slowly regaining motion yet and have not suffered lymphadema. I also had micromet in one node total(sentinol node) and my disease burden was low. Im not sure how these labs measure the amount in mm of micromets.I decided to do the ippi 10mg so I’m not just sitting on the side lines watching. My doctor will monitor closely and we will access from there. But in all its a personal decision and everyone is different. I hope it’s out of my body and the ippi is unessarry. Hoping the same for you too. There was some studies saying that if micromets were so small they might not even have a chance to metasized and it’s almost like a negative node. ANON-
- December 20, 2015 at 1:13 am
Hi anon,
thanks for taking the time to respond. I too heard this re: micromets in one node – basically that the prognosis of 3a is nearly as good if not better than some more invasive stage 2s. Here's hoping 🙂
I wish you all the best as well…
Jessica
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- December 20, 2015 at 1:13 am
Hi anon,
thanks for taking the time to respond. I too heard this re: micromets in one node – basically that the prognosis of 3a is nearly as good if not better than some more invasive stage 2s. Here's hoping 🙂
I wish you all the best as well…
Jessica
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- December 20, 2015 at 1:13 am
Hi anon,
thanks for taking the time to respond. I too heard this re: micromets in one node – basically that the prognosis of 3a is nearly as good if not better than some more invasive stage 2s. Here's hoping 🙂
I wish you all the best as well…
Jessica
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- December 12, 2015 at 5:23 pm
I decided to have the clnd because I’ve read of stories of people having more infected nodes. I had a total of 11 taken out and I felt pretty good 4 days after surgery.(all negative) Slowly regaining motion yet and have not suffered lymphadema. I also had micromet in one node total(sentinol node) and my disease burden was low. Im not sure how these labs measure the amount in mm of micromets.I decided to do the ippi 10mg so I’m not just sitting on the side lines watching. My doctor will monitor closely and we will access from there. But in all its a personal decision and everyone is different. I hope it’s out of my body and the ippi is unessarry. Hoping the same for you too. There was some studies saying that if micromets were so small they might not even have a chance to metasized and it’s almost like a negative node. ANON -
- December 12, 2015 at 5:23 pm
I decided to have the clnd because I’ve read of stories of people having more infected nodes. I had a total of 11 taken out and I felt pretty good 4 days after surgery.(all negative) Slowly regaining motion yet and have not suffered lymphadema. I also had micromet in one node total(sentinol node) and my disease burden was low. Im not sure how these labs measure the amount in mm of micromets.I decided to do the ippi 10mg so I’m not just sitting on the side lines watching. My doctor will monitor closely and we will access from there. But in all its a personal decision and everyone is different. I hope it’s out of my body and the ippi is unessarry. Hoping the same for you too. There was some studies saying that if micromets were so small they might not even have a chance to metasized and it’s almost like a negative node. ANON -
- December 15, 2015 at 2:19 am
Hi Jessica!
I just wanted to share that my story is very similar. I was pregnant and noticed a mole changing- asked my primary care about it- and she said to have it checked during maternity leave (5 months later). So u went to the derm 5 months later- she took it off and was confident that it was nothing. Came back as 1.8 mm deep tumor. Did the sln and came back clear…only to find out about 6 months later that it really wasn't clear- had micromets. I then went a little research crazy and went to memorial Sloan Kettering. They were incredibly Positive and did not recommend the clnd, but the ultra sound approach. Being the anxious worrier that I am, I still did the clnd. All came back clear and no lymphodema. Lord willing, I will be. 2 years NED in April. If that happens, we will talk about another baby! :). Please just know you are not alone!
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- December 15, 2015 at 2:21 am
I guess I should also share that I was 31 when diagnosed.
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- December 15, 2015 at 2:21 am
I guess I should also share that I was 31 when diagnosed.
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- December 15, 2015 at 2:21 am
I guess I should also share that I was 31 when diagnosed.
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- December 20, 2015 at 1:21 am
Hi happy girl,
thanks for taking the time to respond. Your story is indeed very similar!
Have you done any further treatment? Was 2yr NED the guideline given to you by MSK in terms of baby #2?
I wish you all the best and sending hope for another baby in your future!
Jessica
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- December 20, 2015 at 1:21 am
Hi happy girl,
thanks for taking the time to respond. Your story is indeed very similar!
Have you done any further treatment? Was 2yr NED the guideline given to you by MSK in terms of baby #2?
I wish you all the best and sending hope for another baby in your future!
Jessica
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- December 20, 2015 at 1:21 am
Hi happy girl,
thanks for taking the time to respond. Your story is indeed very similar!
Have you done any further treatment? Was 2yr NED the guideline given to you by MSK in terms of baby #2?
I wish you all the best and sending hope for another baby in your future!
Jessica
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- December 15, 2015 at 2:19 am
Hi Jessica!
I just wanted to share that my story is very similar. I was pregnant and noticed a mole changing- asked my primary care about it- and she said to have it checked during maternity leave (5 months later). So u went to the derm 5 months later- she took it off and was confident that it was nothing. Came back as 1.8 mm deep tumor. Did the sln and came back clear…only to find out about 6 months later that it really wasn't clear- had micromets. I then went a little research crazy and went to memorial Sloan Kettering. They were incredibly Positive and did not recommend the clnd, but the ultra sound approach. Being the anxious worrier that I am, I still did the clnd. All came back clear and no lymphodema. Lord willing, I will be. 2 years NED in April. If that happens, we will talk about another baby! :). Please just know you are not alone!
-
- December 15, 2015 at 2:19 am
Hi Jessica!
I just wanted to share that my story is very similar. I was pregnant and noticed a mole changing- asked my primary care about it- and she said to have it checked during maternity leave (5 months later). So u went to the derm 5 months later- she took it off and was confident that it was nothing. Came back as 1.8 mm deep tumor. Did the sln and came back clear…only to find out about 6 months later that it really wasn't clear- had micromets. I then went a little research crazy and went to memorial Sloan Kettering. They were incredibly Positive and did not recommend the clnd, but the ultra sound approach. Being the anxious worrier that I am, I still did the clnd. All came back clear and no lymphodema. Lord willing, I will be. 2 years NED in April. If that happens, we will talk about another baby! :). Please just know you are not alone!
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- December 15, 2015 at 3:38 am
Like many if us I was faced with this same decision 3.5 years ago. My first staging was 3a, and my choices then were:
1) whether or not to have interferon,
2) whether or not to have a CLND.
3) whether or not to watch and wait,
Interferon didn't make sense to me. At that time my thinking was if the disease ends up taking me out, I didn't want to waste a good year feeling like I had flu 24x7x365!
The CLND didn't sound like a whole lot of fun. My basin was in my neck, possible side effects could have been lymphadema, a drooping face from nerve damage, and numbness and scarring. Dr Byrd at SCCA was recruiting for the MSLT2 trial, which was attempting to see if there were any benefits to CLND. I remember thinking that if there was a giant trial to see if CLND was effective, then maybe it wasn't, so I decided to roll the dice and chose not to have one.
Watch and wait was not a good option. At the beginning I had so much fear and so little information, but the idea of just doing *nothing* was not palatable. I found a vaccine trial on the other side of the country and worked hard to get enrolled.
So now fast forward. Turns out there is a lot of speculation that we need our T-cells (as has already been mentioned). Here is a nifty little web page for the layman than explains the lifecycle of T-cells. It is in the lymph nodes that they combine with the immunotherapy drugs, so it makes sense to me that we need those nodes.
But I did advance to stage 4 nonetheless. But without lymph node involvement as far as I can tell. The first PET to detect my organ mets did not show any hot lymph nodes. And no subsequent scan has, except for a lymph node just outside my gallbladder which was almost full of nasty black melanoma cells.
So in retrospect I don't think my outcome would have been different with the CLND as my disease appears to have just bypassed the lymphatic system and went directly to blood.
As another poster said and I agree with, I don't think there is any one path to NED (or even a cure). Its rare that all the doctors have the same opinion, and ultimately we have to negotiate the unfamiliar landscape the best we can.
I wish you the best with your decision making process!
– Paul
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- December 15, 2015 at 3:40 am
Sorry, here is the link I forgot: https://askabiologist.asu.edu/t-cell
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- December 15, 2015 at 3:40 am
Sorry, here is the link I forgot: https://askabiologist.asu.edu/t-cell
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- December 15, 2015 at 3:40 am
Sorry, here is the link I forgot: https://askabiologist.asu.edu/t-cell
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- December 20, 2015 at 1:30 am
Hi Paul,
thank you kindly for taking the time to respond to my post. I have a lot of the same thoughts in terms of what has gone through my mind over these past few weeks – sorting through the info over and over again, trying to feel settled on a decision. I've considered your scenario as well, blood vs lymph, and it came up in a discussion with my oncologists as well. Reminds us how sneaky and scary this disease can be. Wishing you the best Paul. Ultimately I think you're right, as many others have articulated, that there is no singular path…thank you for the link as well. 🙂
jessica
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- December 20, 2015 at 1:30 am
Hi Paul,
thank you kindly for taking the time to respond to my post. I have a lot of the same thoughts in terms of what has gone through my mind over these past few weeks – sorting through the info over and over again, trying to feel settled on a decision. I've considered your scenario as well, blood vs lymph, and it came up in a discussion with my oncologists as well. Reminds us how sneaky and scary this disease can be. Wishing you the best Paul. Ultimately I think you're right, as many others have articulated, that there is no singular path…thank you for the link as well. 🙂
jessica
-
- December 20, 2015 at 1:30 am
Hi Paul,
thank you kindly for taking the time to respond to my post. I have a lot of the same thoughts in terms of what has gone through my mind over these past few weeks – sorting through the info over and over again, trying to feel settled on a decision. I've considered your scenario as well, blood vs lymph, and it came up in a discussion with my oncologists as well. Reminds us how sneaky and scary this disease can be. Wishing you the best Paul. Ultimately I think you're right, as many others have articulated, that there is no singular path…thank you for the link as well. 🙂
jessica
-
- December 15, 2015 at 3:38 am
Like many if us I was faced with this same decision 3.5 years ago. My first staging was 3a, and my choices then were:
1) whether or not to have interferon,
2) whether or not to have a CLND.
3) whether or not to watch and wait,
Interferon didn't make sense to me. At that time my thinking was if the disease ends up taking me out, I didn't want to waste a good year feeling like I had flu 24x7x365!
The CLND didn't sound like a whole lot of fun. My basin was in my neck, possible side effects could have been lymphadema, a drooping face from nerve damage, and numbness and scarring. Dr Byrd at SCCA was recruiting for the MSLT2 trial, which was attempting to see if there were any benefits to CLND. I remember thinking that if there was a giant trial to see if CLND was effective, then maybe it wasn't, so I decided to roll the dice and chose not to have one.
Watch and wait was not a good option. At the beginning I had so much fear and so little information, but the idea of just doing *nothing* was not palatable. I found a vaccine trial on the other side of the country and worked hard to get enrolled.
So now fast forward. Turns out there is a lot of speculation that we need our T-cells (as has already been mentioned). Here is a nifty little web page for the layman than explains the lifecycle of T-cells. It is in the lymph nodes that they combine with the immunotherapy drugs, so it makes sense to me that we need those nodes.
But I did advance to stage 4 nonetheless. But without lymph node involvement as far as I can tell. The first PET to detect my organ mets did not show any hot lymph nodes. And no subsequent scan has, except for a lymph node just outside my gallbladder which was almost full of nasty black melanoma cells.
So in retrospect I don't think my outcome would have been different with the CLND as my disease appears to have just bypassed the lymphatic system and went directly to blood.
As another poster said and I agree with, I don't think there is any one path to NED (or even a cure). Its rare that all the doctors have the same opinion, and ultimately we have to negotiate the unfamiliar landscape the best we can.
I wish you the best with your decision making process!
– Paul
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- December 15, 2015 at 3:38 am
Like many if us I was faced with this same decision 3.5 years ago. My first staging was 3a, and my choices then were:
1) whether or not to have interferon,
2) whether or not to have a CLND.
3) whether or not to watch and wait,
Interferon didn't make sense to me. At that time my thinking was if the disease ends up taking me out, I didn't want to waste a good year feeling like I had flu 24x7x365!
The CLND didn't sound like a whole lot of fun. My basin was in my neck, possible side effects could have been lymphadema, a drooping face from nerve damage, and numbness and scarring. Dr Byrd at SCCA was recruiting for the MSLT2 trial, which was attempting to see if there were any benefits to CLND. I remember thinking that if there was a giant trial to see if CLND was effective, then maybe it wasn't, so I decided to roll the dice and chose not to have one.
Watch and wait was not a good option. At the beginning I had so much fear and so little information, but the idea of just doing *nothing* was not palatable. I found a vaccine trial on the other side of the country and worked hard to get enrolled.
So now fast forward. Turns out there is a lot of speculation that we need our T-cells (as has already been mentioned). Here is a nifty little web page for the layman than explains the lifecycle of T-cells. It is in the lymph nodes that they combine with the immunotherapy drugs, so it makes sense to me that we need those nodes.
But I did advance to stage 4 nonetheless. But without lymph node involvement as far as I can tell. The first PET to detect my organ mets did not show any hot lymph nodes. And no subsequent scan has, except for a lymph node just outside my gallbladder which was almost full of nasty black melanoma cells.
So in retrospect I don't think my outcome would have been different with the CLND as my disease appears to have just bypassed the lymphatic system and went directly to blood.
As another poster said and I agree with, I don't think there is any one path to NED (or even a cure). Its rare that all the doctors have the same opinion, and ultimately we have to negotiate the unfamiliar landscape the best we can.
I wish you the best with your decision making process!
– Paul
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Tagged: cutaneous melanoma
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