› Forums › General Melanoma Community › Any MSLT- II Clinical Trial Participants or Information Out There?
- This topic has 54 replies, 6 voices, and was last updated 9 years, 11 months ago by
1friend.
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- May 22, 2014 at 12:23 am
Hey Group- My wife was diagnosed with Melanoma in April. Breslow was 1.2mm, mitonic rate <1.mm2, mole on left shoulder blade. We were told at UAB that they found literally one cell in a sentinel lymph node and recommended that we watch and observe. We went to MD Anderson for a second opinion. They confirmed the one cell to be Melanoma, but said that standard procedure is to remove the remaining axillary nodes, regardless of how small the count is. They are not making us, but are strongly recommending we have the second surgery. They feel this gives her the best chance of it not returning. Tough call, but we are scheduled for surgery out there on June 11. Any advice on the lymph node dissection? Said it is similar to what breast cancer patients have, but not quite as bad due to the area not being exposed to radiation or chemotherapy and they get additional lymph nodes with breast cancer patients up around the collar bone. My wife will not have that, but she will have a drain for about a month. I have never dreaded something so much yet ready for it to be over with at the same time. If she doesn't have the surgery, MD Anderson would scan the lymph nodes every 3 months with an ultra sound. If/when it showed up, then they would take the lymph nodes out, but we would at that point probably be further down the line than we wanted to be. Everyone we have talked to except UAB, is against the"watch and observe" philosophy and say attack this stuff aggressively at the beginning. In other words, get the rest of those lymph nodes out. This is basically the MSLT -II clinical trial without being enrolled in it.
Thoughts and/or advice?
Thanks
- Replies
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- May 22, 2014 at 3:19 am
I won't give advice but will tell you what I know through researching and speaking with my surgeon. I was offered a spot in that trial after being dx. Stage 3a. With 1 to 2 % surface area cancer in the sentinal node. Micromets, not sub-micromets which is what your wife has. After much research and reading every word of the first MSLT trial, I found a little paragraph in there about how they believed that removing the rest of the nodes was possibly a cure for the 20% of the people who have cancer in additional nodes. This was basically verified in the results of the MSLT II trial. I have also read numerous other studies in relation to watch and wait or getting the completion dissection. Some of these trials basically state that people with only 1 cell shouldn't even be staged at 3a. But these other trials have shown that they just can't say for sure that someone won't progress. A few do. So they leave the choice open for the patient. Also there is about a five percent chance that melanoma has bypassed the nodes and entered the blood stream according to my surgeon. The other thing that they do know with the ultra sound approach is that if you do progress, you are often in a worse spot. One of these studies was written by my surgeon. That being said, regardless of what his study said, he told me he didn't believe that I would have any cancer in the other nodes. So, I took all that information, thought on it and told him I wanted the dissection. I did have to take a month off from work. It wasn't easy, but I really wasn't in all that much pain. I do have about 1+ edema in that leg now. Lymph edema is the big concern for people who get dissections because it can at times be really bad. So, that's all I know. Others will chime in also. Good luck in whatever you decide to do.
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- May 22, 2014 at 3:19 am
I won't give advice but will tell you what I know through researching and speaking with my surgeon. I was offered a spot in that trial after being dx. Stage 3a. With 1 to 2 % surface area cancer in the sentinal node. Micromets, not sub-micromets which is what your wife has. After much research and reading every word of the first MSLT trial, I found a little paragraph in there about how they believed that removing the rest of the nodes was possibly a cure for the 20% of the people who have cancer in additional nodes. This was basically verified in the results of the MSLT II trial. I have also read numerous other studies in relation to watch and wait or getting the completion dissection. Some of these trials basically state that people with only 1 cell shouldn't even be staged at 3a. But these other trials have shown that they just can't say for sure that someone won't progress. A few do. So they leave the choice open for the patient. Also there is about a five percent chance that melanoma has bypassed the nodes and entered the blood stream according to my surgeon. The other thing that they do know with the ultra sound approach is that if you do progress, you are often in a worse spot. One of these studies was written by my surgeon. That being said, regardless of what his study said, he told me he didn't believe that I would have any cancer in the other nodes. So, I took all that information, thought on it and told him I wanted the dissection. I did have to take a month off from work. It wasn't easy, but I really wasn't in all that much pain. I do have about 1+ edema in that leg now. Lymph edema is the big concern for people who get dissections because it can at times be really bad. So, that's all I know. Others will chime in also. Good luck in whatever you decide to do.
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- May 22, 2014 at 4:19 am
Thanks Momrn5. That is a lot of good Information you shared. It helps to here from someone who has walked the walk. If you don't mind me asking; where did you have your procedure, how long a go, and have you had any reoccurrences? Wishing you all the best. Thanks for taking time to help others. I have seen stuff about all other clinical trials, but no one posting about the MSLT-2 trial. It is my understanding that trial started in 2004 or 2005 so you would think that they have enough data now to prefer one over the other. Anyway. Thank you.
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- May 22, 2014 at 4:19 am
Thanks Momrn5. That is a lot of good Information you shared. It helps to here from someone who has walked the walk. If you don't mind me asking; where did you have your procedure, how long a go, and have you had any reoccurrences? Wishing you all the best. Thanks for taking time to help others. I have seen stuff about all other clinical trials, but no one posting about the MSLT-2 trial. It is my understanding that trial started in 2004 or 2005 so you would think that they have enough data now to prefer one over the other. Anyway. Thank you.
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- May 22, 2014 at 4:59 am
I had my diagnosis 11 months ago a couple of days into July.. Lymphendectomy in October 2013. Scans in December and again just this past week. I doctor at University of Michigan. Sabel was my surgeon and boy is he good. So basically one year out and no reoccurrences as of yet. If you can get past the 2 year mark, there is only a very small chance of reoccurrence after that. But it does happen. Here is a link. Please read page 5, the second column very carefully. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3463679/#!po=10.0000
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- May 22, 2014 at 4:59 am
I had my diagnosis 11 months ago a couple of days into July.. Lymphendectomy in October 2013. Scans in December and again just this past week. I doctor at University of Michigan. Sabel was my surgeon and boy is he good. So basically one year out and no reoccurrences as of yet. If you can get past the 2 year mark, there is only a very small chance of reoccurrence after that. But it does happen. Here is a link. Please read page 5, the second column very carefully. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3463679/#!po=10.0000
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- May 22, 2014 at 5:12 am
Here is a sum up in more layman's terms. http://dermatologytimes.modernmedicine.com/dermatology-times/RC/trial-shows-benefits-immediate-lymph-node-dissection-in-some-melanoma-cases
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- May 22, 2014 at 5:12 am
Here is a sum up in more layman's terms. http://dermatologytimes.modernmedicine.com/dermatology-times/RC/trial-shows-benefits-immediate-lymph-node-dissection-in-some-melanoma-cases
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- May 22, 2014 at 5:12 am
Here is a sum up in more layman's terms. http://dermatologytimes.modernmedicine.com/dermatology-times/RC/trial-shows-benefits-immediate-lymph-node-dissection-in-some-melanoma-cases
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- May 22, 2014 at 4:59 am
I had my diagnosis 11 months ago a couple of days into July.. Lymphendectomy in October 2013. Scans in December and again just this past week. I doctor at University of Michigan. Sabel was my surgeon and boy is he good. So basically one year out and no reoccurrences as of yet. If you can get past the 2 year mark, there is only a very small chance of reoccurrence after that. But it does happen. Here is a link. Please read page 5, the second column very carefully. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3463679/#!po=10.0000
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- May 22, 2014 at 4:19 am
Thanks Momrn5. That is a lot of good Information you shared. It helps to here from someone who has walked the walk. If you don't mind me asking; where did you have your procedure, how long a go, and have you had any reoccurrences? Wishing you all the best. Thanks for taking time to help others. I have seen stuff about all other clinical trials, but no one posting about the MSLT-2 trial. It is my understanding that trial started in 2004 or 2005 so you would think that they have enough data now to prefer one over the other. Anyway. Thank you.
-
- May 22, 2014 at 3:19 am
I won't give advice but will tell you what I know through researching and speaking with my surgeon. I was offered a spot in that trial after being dx. Stage 3a. With 1 to 2 % surface area cancer in the sentinal node. Micromets, not sub-micromets which is what your wife has. After much research and reading every word of the first MSLT trial, I found a little paragraph in there about how they believed that removing the rest of the nodes was possibly a cure for the 20% of the people who have cancer in additional nodes. This was basically verified in the results of the MSLT II trial. I have also read numerous other studies in relation to watch and wait or getting the completion dissection. Some of these trials basically state that people with only 1 cell shouldn't even be staged at 3a. But these other trials have shown that they just can't say for sure that someone won't progress. A few do. So they leave the choice open for the patient. Also there is about a five percent chance that melanoma has bypassed the nodes and entered the blood stream according to my surgeon. The other thing that they do know with the ultra sound approach is that if you do progress, you are often in a worse spot. One of these studies was written by my surgeon. That being said, regardless of what his study said, he told me he didn't believe that I would have any cancer in the other nodes. So, I took all that information, thought on it and told him I wanted the dissection. I did have to take a month off from work. It wasn't easy, but I really wasn't in all that much pain. I do have about 1+ edema in that leg now. Lymph edema is the big concern for people who get dissections because it can at times be really bad. So, that's all I know. Others will chime in also. Good luck in whatever you decide to do.
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- May 22, 2014 at 8:02 am
We are seeing Dr. Urist tomorrow for a consultation for a second WLE. We have just returned from MD Anderson. 5/13-5/20. The medical oncologist at MDA recommended another lymph biopsy but the MDA oncology surgeon disagreed. The medical surgeon at MDA knows Urist and felt like we were in good hands if we wanted to stay in B'ham to have surgery. We (like you) are trying to navigate through this crazy melanoma world. Best of luck to you.
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- May 22, 2014 at 8:02 am
We are seeing Dr. Urist tomorrow for a consultation for a second WLE. We have just returned from MD Anderson. 5/13-5/20. The medical oncologist at MDA recommended another lymph biopsy but the MDA oncology surgeon disagreed. The medical surgeon at MDA knows Urist and felt like we were in good hands if we wanted to stay in B'ham to have surgery. We (like you) are trying to navigate through this crazy melanoma world. Best of luck to you.
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- May 22, 2014 at 8:02 am
We are seeing Dr. Urist tomorrow for a consultation for a second WLE. We have just returned from MD Anderson. 5/13-5/20. The medical oncologist at MDA recommended another lymph biopsy but the MDA oncology surgeon disagreed. The medical surgeon at MDA knows Urist and felt like we were in good hands if we wanted to stay in B'ham to have surgery. We (like you) are trying to navigate through this crazy melanoma world. Best of luck to you.
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- May 22, 2014 at 4:48 pm
We are seeing Dr. Janice Cormier. She is a surgical oncologist. We never saw a medical oncologist. We went straight to the surgeon and she recommends (even with just one cell) that we have the dissectioon.
She is willing to monitor with Ultra-sound if we opt out of surgery, but recommends the dissection. She says this gives her the best chance of no reocurrence. Tough decision for sure.
I know the MSLT-II clinical trial is not complete, but you would think that those enrolled would be talking by now. It opened in 2004 0r 2005, so somebody is almost 10 years out by now.
Best of luck to you.
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- May 22, 2014 at 4:48 pm
We are seeing Dr. Janice Cormier. She is a surgical oncologist. We never saw a medical oncologist. We went straight to the surgeon and she recommends (even with just one cell) that we have the dissectioon.
She is willing to monitor with Ultra-sound if we opt out of surgery, but recommends the dissection. She says this gives her the best chance of no reocurrence. Tough decision for sure.
I know the MSLT-II clinical trial is not complete, but you would think that those enrolled would be talking by now. It opened in 2004 0r 2005, so somebody is almost 10 years out by now.
Best of luck to you.
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- May 22, 2014 at 6:24 pm
I am enrolled in the MSLT – II trial. Here are some thoughts –
A little about me since w melanoma it's never apples to apples. My tumor was 2.0, on my hand, >1 mitotic rate, and microscopic cells in 1 of 5 sentinel nodes. I was diagnosed three years ago to the day and faced the same decision. We were told that there was a 5 – 7 % chance there would be additional positive nodes. Collectively (husband and oncologist at a center of excellence) felt like the MSLT – II was a great option. Our thought was that if we could avoid the surgery while also being monitored very closely and still staying ahead of it it was the best of both worlds. I had a newborn at home and for me not being able to hold him for an extended period was, at the time, my worst case scenario.
Now of course fast forward 18 months, I turned out to be one of the 5-7% that had additional positive lymph nodes. My additional node was found via ultrasound and confirmed on CT. I still believe we are ahead of it and according to my oncologist doesn't impact my overall staging. That being said its been really really difficult emotionally and mentally to restart the clock and deal with this thing all over again when we were well on our way to being done.
Clearly my recommendation would be to have the surgery. I'm biased I can't help that. I do think the reason you aren't getting a lot of responses is probably bc the others in the trial are out living life w melanoma in the rear view mirror.
I do think your wife's case is better than mine and you have every reason to believe she won't have any more cancer in her nodes.
For me, the CLND was not nearly as bad as avertised. Not even close. I stayed overnight at the hospital one night – for pain control. My drain came out in 5 days. I think a month sounds really long. I have had minimal lingering issues.
Ok, I rambled a bit and hope I didn't come on to strong. Just hit close to home since we went thru the same decisions.
Good luck!
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- May 22, 2014 at 7:31 pm
Prd10 – I am so glad you responded. Finally, someone who is actually enrolled in the trial. Thank you so much for sharing your story. This definitely helps us. As you said, I too believe you are still a head of the game and beating this.
Did you ever have to or are you currently taking Interferon? I was just wondering what treatment if any (besides the CLND) is standard if it does come back in the nodes.
Thank you so much!!!
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- May 23, 2014 at 5:05 am
I am another participant in the MSLT-II trial. My initial diagnosis of Stage III was in February 2005. My SNB (left axilla) revealed two nodes involved (I do not, at this moment, have the details, #'s, but involvement was small). I chose to participate in the MSLT-II trial and I had three ultra-sound checks. In September 2005, one node increased to just under 1.0 (?) and my doctor did a 23 node removal LND. None of the nodes had detection of mel! Interferon usage was not chosen after either of these surgeries. No evidence of disease, NED!
I am sorry I don't have specifics, dates, numbers here, but I diligently had a regiment of 6-month follow-ups with my derm and my oncologist. Some CT scans, MRI's, lots of chest x-rays, bloodwork as follow-up care during this time.
I had several recurrences pop up on my left breast, beginning sometime in 2007. In May 2008, upon my surgeon's recommendation (this had been discussed when these recurrences kept coming, up to four WLE's), I had a mastectomy of my left breast and skin graft from my left thigh to cover the chest wound. I was 59 at the time, felt confident and secure in this decision.
I had around two years of physical therapy, lymphatic massage therapy, to ease my lymphadema issues in my left arm. It isn't that bad, but it is there, sometimes more "there" than other times. I deal with it with a compression (stocking-type) sleeve when needed, easy to disguise and not uncomfortable at all. I have some range of motion issues (hard to do the back of my hair), but truthfully this has been a small price to pay for NED.
CarolA
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- May 23, 2014 at 6:48 pm
Thanks CarolA – Good to hear that you are NED!!! Thanks so much for sharing your story. This helps and I am glad to finally connect with some of the MSLT-II participants.
If you don't mind me asking, were your recurrences in other lymph nodes or other moles (spots) that showed up?
Based on your story would you reccommend the CLND to begin with?
Thanks so much!!!
1friend…
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- May 23, 2014 at 6:48 pm
Thanks CarolA – Good to hear that you are NED!!! Thanks so much for sharing your story. This helps and I am glad to finally connect with some of the MSLT-II participants.
If you don't mind me asking, were your recurrences in other lymph nodes or other moles (spots) that showed up?
Based on your story would you reccommend the CLND to begin with?
Thanks so much!!!
1friend…
-
- May 23, 2014 at 6:48 pm
Thanks CarolA – Good to hear that you are NED!!! Thanks so much for sharing your story. This helps and I am glad to finally connect with some of the MSLT-II participants.
If you don't mind me asking, were your recurrences in other lymph nodes or other moles (spots) that showed up?
Based on your story would you reccommend the CLND to begin with?
Thanks so much!!!
1friend…
-
- May 23, 2014 at 5:05 am
I am another participant in the MSLT-II trial. My initial diagnosis of Stage III was in February 2005. My SNB (left axilla) revealed two nodes involved (I do not, at this moment, have the details, #'s, but involvement was small). I chose to participate in the MSLT-II trial and I had three ultra-sound checks. In September 2005, one node increased to just under 1.0 (?) and my doctor did a 23 node removal LND. None of the nodes had detection of mel! Interferon usage was not chosen after either of these surgeries. No evidence of disease, NED!
I am sorry I don't have specifics, dates, numbers here, but I diligently had a regiment of 6-month follow-ups with my derm and my oncologist. Some CT scans, MRI's, lots of chest x-rays, bloodwork as follow-up care during this time.
I had several recurrences pop up on my left breast, beginning sometime in 2007. In May 2008, upon my surgeon's recommendation (this had been discussed when these recurrences kept coming, up to four WLE's), I had a mastectomy of my left breast and skin graft from my left thigh to cover the chest wound. I was 59 at the time, felt confident and secure in this decision.
I had around two years of physical therapy, lymphatic massage therapy, to ease my lymphadema issues in my left arm. It isn't that bad, but it is there, sometimes more "there" than other times. I deal with it with a compression (stocking-type) sleeve when needed, easy to disguise and not uncomfortable at all. I have some range of motion issues (hard to do the back of my hair), but truthfully this has been a small price to pay for NED.
CarolA
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- May 23, 2014 at 5:05 am
I am another participant in the MSLT-II trial. My initial diagnosis of Stage III was in February 2005. My SNB (left axilla) revealed two nodes involved (I do not, at this moment, have the details, #'s, but involvement was small). I chose to participate in the MSLT-II trial and I had three ultra-sound checks. In September 2005, one node increased to just under 1.0 (?) and my doctor did a 23 node removal LND. None of the nodes had detection of mel! Interferon usage was not chosen after either of these surgeries. No evidence of disease, NED!
I am sorry I don't have specifics, dates, numbers here, but I diligently had a regiment of 6-month follow-ups with my derm and my oncologist. Some CT scans, MRI's, lots of chest x-rays, bloodwork as follow-up care during this time.
I had several recurrences pop up on my left breast, beginning sometime in 2007. In May 2008, upon my surgeon's recommendation (this had been discussed when these recurrences kept coming, up to four WLE's), I had a mastectomy of my left breast and skin graft from my left thigh to cover the chest wound. I was 59 at the time, felt confident and secure in this decision.
I had around two years of physical therapy, lymphatic massage therapy, to ease my lymphadema issues in my left arm. It isn't that bad, but it is there, sometimes more "there" than other times. I deal with it with a compression (stocking-type) sleeve when needed, easy to disguise and not uncomfortable at all. I have some range of motion issues (hard to do the back of my hair), but truthfully this has been a small price to pay for NED.
CarolA
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- May 22, 2014 at 7:31 pm
Prd10 – I am so glad you responded. Finally, someone who is actually enrolled in the trial. Thank you so much for sharing your story. This definitely helps us. As you said, I too believe you are still a head of the game and beating this.
Did you ever have to or are you currently taking Interferon? I was just wondering what treatment if any (besides the CLND) is standard if it does come back in the nodes.
Thank you so much!!!
-
- May 22, 2014 at 7:31 pm
Prd10 – I am so glad you responded. Finally, someone who is actually enrolled in the trial. Thank you so much for sharing your story. This definitely helps us. As you said, I too believe you are still a head of the game and beating this.
Did you ever have to or are you currently taking Interferon? I was just wondering what treatment if any (besides the CLND) is standard if it does come back in the nodes.
Thank you so much!!!
-
- May 22, 2014 at 6:24 pm
I am enrolled in the MSLT – II trial. Here are some thoughts –
A little about me since w melanoma it's never apples to apples. My tumor was 2.0, on my hand, >1 mitotic rate, and microscopic cells in 1 of 5 sentinel nodes. I was diagnosed three years ago to the day and faced the same decision. We were told that there was a 5 – 7 % chance there would be additional positive nodes. Collectively (husband and oncologist at a center of excellence) felt like the MSLT – II was a great option. Our thought was that if we could avoid the surgery while also being monitored very closely and still staying ahead of it it was the best of both worlds. I had a newborn at home and for me not being able to hold him for an extended period was, at the time, my worst case scenario.
Now of course fast forward 18 months, I turned out to be one of the 5-7% that had additional positive lymph nodes. My additional node was found via ultrasound and confirmed on CT. I still believe we are ahead of it and according to my oncologist doesn't impact my overall staging. That being said its been really really difficult emotionally and mentally to restart the clock and deal with this thing all over again when we were well on our way to being done.
Clearly my recommendation would be to have the surgery. I'm biased I can't help that. I do think the reason you aren't getting a lot of responses is probably bc the others in the trial are out living life w melanoma in the rear view mirror.
I do think your wife's case is better than mine and you have every reason to believe she won't have any more cancer in her nodes.
For me, the CLND was not nearly as bad as avertised. Not even close. I stayed overnight at the hospital one night – for pain control. My drain came out in 5 days. I think a month sounds really long. I have had minimal lingering issues.
Ok, I rambled a bit and hope I didn't come on to strong. Just hit close to home since we went thru the same decisions.
Good luck!
-
- May 22, 2014 at 6:24 pm
I am enrolled in the MSLT – II trial. Here are some thoughts –
A little about me since w melanoma it's never apples to apples. My tumor was 2.0, on my hand, >1 mitotic rate, and microscopic cells in 1 of 5 sentinel nodes. I was diagnosed three years ago to the day and faced the same decision. We were told that there was a 5 – 7 % chance there would be additional positive nodes. Collectively (husband and oncologist at a center of excellence) felt like the MSLT – II was a great option. Our thought was that if we could avoid the surgery while also being monitored very closely and still staying ahead of it it was the best of both worlds. I had a newborn at home and for me not being able to hold him for an extended period was, at the time, my worst case scenario.
Now of course fast forward 18 months, I turned out to be one of the 5-7% that had additional positive lymph nodes. My additional node was found via ultrasound and confirmed on CT. I still believe we are ahead of it and according to my oncologist doesn't impact my overall staging. That being said its been really really difficult emotionally and mentally to restart the clock and deal with this thing all over again when we were well on our way to being done.
Clearly my recommendation would be to have the surgery. I'm biased I can't help that. I do think the reason you aren't getting a lot of responses is probably bc the others in the trial are out living life w melanoma in the rear view mirror.
I do think your wife's case is better than mine and you have every reason to believe she won't have any more cancer in her nodes.
For me, the CLND was not nearly as bad as avertised. Not even close. I stayed overnight at the hospital one night – for pain control. My drain came out in 5 days. I think a month sounds really long. I have had minimal lingering issues.
Ok, I rambled a bit and hope I didn't come on to strong. Just hit close to home since we went thru the same decisions.
Good luck!
-
- May 22, 2014 at 4:48 pm
We are seeing Dr. Janice Cormier. She is a surgical oncologist. We never saw a medical oncologist. We went straight to the surgeon and she recommends (even with just one cell) that we have the dissectioon.
She is willing to monitor with Ultra-sound if we opt out of surgery, but recommends the dissection. She says this gives her the best chance of no reocurrence. Tough decision for sure.
I know the MSLT-II clinical trial is not complete, but you would think that those enrolled would be talking by now. It opened in 2004 0r 2005, so somebody is almost 10 years out by now.
Best of luck to you.
-
- May 22, 2014 at 4:39 pm
Yes. Dr. Urist is well known in the Melanoma world. I feel good about the sentinel node surgery he performed on my wife; we just didn't find any melanoma clinics that agreed with his "watch and observe" recommendation.
Best of luck to you. You are in good habds as far as a surgeon goes. That is for sure.
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- May 22, 2014 at 4:39 pm
Yes. Dr. Urist is well known in the Melanoma world. I feel good about the sentinel node surgery he performed on my wife; we just didn't find any melanoma clinics that agreed with his "watch and observe" recommendation.
Best of luck to you. You are in good habds as far as a surgeon goes. That is for sure.
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- May 22, 2014 at 4:39 pm
Yes. Dr. Urist is well known in the Melanoma world. I feel good about the sentinel node surgery he performed on my wife; we just didn't find any melanoma clinics that agreed with his "watch and observe" recommendation.
Best of luck to you. You are in good habds as far as a surgeon goes. That is for sure.
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Tagged: cutaneous melanoma
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