› Forums › Cutaneous Melanoma Community › Resectable stage IIIC, but doc wants to only do Yervoy for now
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BrianP.
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- May 19, 2014 at 2:56 pm
This board has provided a wealth of information. THANK YOU to all of those that support and educate!
Very brief background: My dad had 4.9mm nodular diagnosed in January, WLE and complete axillary node dissection under left arm (8 of 48 with melanoma). He has had 2 local recurrences since, with the first one removed surgically. The second one is growing on the outside of his WLE scar (from 1st local recurrence) and he has a couple of very small mets in the tissue in the same general area. Organs are clean thus far.
His specialist doc (O'Day from Bevery Hills Cancer Center) started him on Yervoy on Friday and does not believe surgery is necessary/helpful at this time. He wants to see how the mets respond and then, depending on how things go, may continue with the full 4 doses of Yervoy or switch to PD1 expanded access.
My mom spoke with a general surgeon friend and he insists that the mets need to be removed if they can be. Dr. O'Day feels differently and wants us to trust his judgement. We do and understand his reasoning, but can't help but have some doubt about just leaving the mets there indefinitely and risking them growing and spreading further. After all, surgical removed is or used to be best practice right??
Anyone else have a similar experience? Could really used some insight.
Thank you in advance!
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- May 19, 2014 at 3:17 pm
When I had 8 lung mets the thoracic surgeon (and oncologist) didn't think it was worth it to try to resect all of the mets, because if there were 8 detectable on scan, there was probably more disease around, micrometastases say, not detectable by scans which only can see down to a certain resolution.
I can't say if the possibility of micrometastases is Dr. O'Day's reasoning but it's certainly a major reason one might seek systemic therapy. Also, by doing IPI now (e.g., ASAP), then if IPI fails your Dad is also being positioned to try the next systemic therapy mentioned (PD1 EAP which requires prior failure on IPI). Leaving the visible mets in place might be necessary to see if IPI failed (or for that matter, succeeded). Again, something to check out with Dr. O'Day to understand his reasoning.If there are any doubts on the current course of treatment (and even if there aren't) it would probably be prudent to seek a second opinion from a different melanoma specialist (there are quite a few in the LA area).I personally would not give much if any weight to melanoma treatment advice from a general surgeon who is not a melanoma specialist and is not versed in the latest melanoma treatments the ways a specialist would be.Hope this helps. – Kyle -
- May 19, 2014 at 3:17 pm
When I had 8 lung mets the thoracic surgeon (and oncologist) didn't think it was worth it to try to resect all of the mets, because if there were 8 detectable on scan, there was probably more disease around, micrometastases say, not detectable by scans which only can see down to a certain resolution.
I can't say if the possibility of micrometastases is Dr. O'Day's reasoning but it's certainly a major reason one might seek systemic therapy. Also, by doing IPI now (e.g., ASAP), then if IPI fails your Dad is also being positioned to try the next systemic therapy mentioned (PD1 EAP which requires prior failure on IPI). Leaving the visible mets in place might be necessary to see if IPI failed (or for that matter, succeeded). Again, something to check out with Dr. O'Day to understand his reasoning.If there are any doubts on the current course of treatment (and even if there aren't) it would probably be prudent to seek a second opinion from a different melanoma specialist (there are quite a few in the LA area).I personally would not give much if any weight to melanoma treatment advice from a general surgeon who is not a melanoma specialist and is not versed in the latest melanoma treatments the ways a specialist would be.Hope this helps. – Kyle -
- May 19, 2014 at 3:17 pm
When I had 8 lung mets the thoracic surgeon (and oncologist) didn't think it was worth it to try to resect all of the mets, because if there were 8 detectable on scan, there was probably more disease around, micrometastases say, not detectable by scans which only can see down to a certain resolution.
I can't say if the possibility of micrometastases is Dr. O'Day's reasoning but it's certainly a major reason one might seek systemic therapy. Also, by doing IPI now (e.g., ASAP), then if IPI fails your Dad is also being positioned to try the next systemic therapy mentioned (PD1 EAP which requires prior failure on IPI). Leaving the visible mets in place might be necessary to see if IPI failed (or for that matter, succeeded). Again, something to check out with Dr. O'Day to understand his reasoning.If there are any doubts on the current course of treatment (and even if there aren't) it would probably be prudent to seek a second opinion from a different melanoma specialist (there are quite a few in the LA area).I personally would not give much if any weight to melanoma treatment advice from a general surgeon who is not a melanoma specialist and is not versed in the latest melanoma treatments the ways a specialist would be.Hope this helps. – Kyle -
- May 19, 2014 at 5:05 pm
Hi Ozzy,
I have taken the same route; I'm Stage 3C with 7 tiny (rice grain – bb sized) mets near my SNB scar. We also have the same doc.
In January I started Ipi, and completed all 4 treatments with moderate problems with fatigue, headache, random itch and now, arthrittis like symptoms in my hands and arms. Initially I thought I would fail Ipi, as I didn't think I was seeing any change, but then a few weeks ago the mets started to get soft, and they became harder and harder to see and feel where a met ends and normal tissue starts. So it looks like I"m going to be at least a partial responder to Ipi.
When I first sought treatment for the intransit mets, I thought the same as you- let's get these suckers out as soon as possible, but thanks to the advice of someone on this board (THANK YOU!!), I left one met in to be used as a marker or indicator of progress for some kind of systematic treatment (Ipi or anti-PD1). I'm sure glad I did! Because of that advice, I qualified for Ipi and now I can see that the treatment is working!
In all things melanoma, get good advice from trusted melanoma specialists (the field changes too fast for non-specialists to keep up), be as informed as you possibly can as make your treatment decision,, make your decision and don't look back.
I hope that Ipi does it's good work for your husband!
Blessings,
Julie
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- May 19, 2014 at 5:05 pm
Hi Ozzy,
I have taken the same route; I'm Stage 3C with 7 tiny (rice grain – bb sized) mets near my SNB scar. We also have the same doc.
In January I started Ipi, and completed all 4 treatments with moderate problems with fatigue, headache, random itch and now, arthrittis like symptoms in my hands and arms. Initially I thought I would fail Ipi, as I didn't think I was seeing any change, but then a few weeks ago the mets started to get soft, and they became harder and harder to see and feel where a met ends and normal tissue starts. So it looks like I"m going to be at least a partial responder to Ipi.
When I first sought treatment for the intransit mets, I thought the same as you- let's get these suckers out as soon as possible, but thanks to the advice of someone on this board (THANK YOU!!), I left one met in to be used as a marker or indicator of progress for some kind of systematic treatment (Ipi or anti-PD1). I'm sure glad I did! Because of that advice, I qualified for Ipi and now I can see that the treatment is working!
In all things melanoma, get good advice from trusted melanoma specialists (the field changes too fast for non-specialists to keep up), be as informed as you possibly can as make your treatment decision,, make your decision and don't look back.
I hope that Ipi does it's good work for your husband!
Blessings,
Julie
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- May 19, 2014 at 7:16 pm
Julie!!!! That sounds awesome. So happy to hear that.
Ozzie, I think dr Day's plan sound's very plausible. If you aren't completely comfortable with the notion of leaving the met maybe you could get 2 – 4 infusions of ipi and then have it removed. That way you get both the systemic and surgical advantage. Disadvantage is you wouldn't be able to physically track the ipi effectiveness like Julie is. Maybe something to ask dr day if you continue to have doubts.
Brian
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- May 19, 2014 at 7:16 pm
Julie!!!! That sounds awesome. So happy to hear that.
Ozzie, I think dr Day's plan sound's very plausible. If you aren't completely comfortable with the notion of leaving the met maybe you could get 2 – 4 infusions of ipi and then have it removed. That way you get both the systemic and surgical advantage. Disadvantage is you wouldn't be able to physically track the ipi effectiveness like Julie is. Maybe something to ask dr day if you continue to have doubts.
Brian
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- May 19, 2014 at 7:16 pm
Julie!!!! That sounds awesome. So happy to hear that.
Ozzie, I think dr Day's plan sound's very plausible. If you aren't completely comfortable with the notion of leaving the met maybe you could get 2 – 4 infusions of ipi and then have it removed. That way you get both the systemic and surgical advantage. Disadvantage is you wouldn't be able to physically track the ipi effectiveness like Julie is. Maybe something to ask dr day if you continue to have doubts.
Brian
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- May 19, 2014 at 5:05 pm
Hi Ozzy,
I have taken the same route; I'm Stage 3C with 7 tiny (rice grain – bb sized) mets near my SNB scar. We also have the same doc.
In January I started Ipi, and completed all 4 treatments with moderate problems with fatigue, headache, random itch and now, arthrittis like symptoms in my hands and arms. Initially I thought I would fail Ipi, as I didn't think I was seeing any change, but then a few weeks ago the mets started to get soft, and they became harder and harder to see and feel where a met ends and normal tissue starts. So it looks like I"m going to be at least a partial responder to Ipi.
When I first sought treatment for the intransit mets, I thought the same as you- let's get these suckers out as soon as possible, but thanks to the advice of someone on this board (THANK YOU!!), I left one met in to be used as a marker or indicator of progress for some kind of systematic treatment (Ipi or anti-PD1). I'm sure glad I did! Because of that advice, I qualified for Ipi and now I can see that the treatment is working!
In all things melanoma, get good advice from trusted melanoma specialists (the field changes too fast for non-specialists to keep up), be as informed as you possibly can as make your treatment decision,, make your decision and don't look back.
I hope that Ipi does it's good work for your husband!
Blessings,
Julie
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- May 20, 2014 at 12:58 am
I have all resectable mets except one removed. I have many un-resectable mets. 5 years ago when my mets started growing wildly again, I had two resectable mets and innumerable new internal, non-resectable mets. One was removed. I wanted to try a treatment that is not FDA approved for Melanoma. I convinced my Melanoma Specialist Oncologist to try what I wanted. He asked, IF I minded leaving the one on my neck to use as a guide as to what was likely happening to the innumerable ones inside me. QUOTE "The surface one isn't what will kill you it's the internal ones that can." I understand that your case is a little different in your not having visible metastisized internal mets (That can currently been on scans.) This does not mean that a few cells have not already spread and have just not grown to the detectable size. The one on my neck was left to use aws a guide and as a reason to not have an excessive number of radiation scans.
It is possible that removal would "cure" your husband. It is also possible and likely that a few cells have spread beyond the local area. I like the Idea of trying a systemic treatment due to the two re-occurnces that he has had. I would "GO FOR IT!" and follow Dr Days advice in this case.
P.S. The one on my neck is just a smal, flat dark spot now. It no longer stands out a 1/4 inch like it once did.
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- May 20, 2014 at 12:58 am
I have all resectable mets except one removed. I have many un-resectable mets. 5 years ago when my mets started growing wildly again, I had two resectable mets and innumerable new internal, non-resectable mets. One was removed. I wanted to try a treatment that is not FDA approved for Melanoma. I convinced my Melanoma Specialist Oncologist to try what I wanted. He asked, IF I minded leaving the one on my neck to use as a guide as to what was likely happening to the innumerable ones inside me. QUOTE "The surface one isn't what will kill you it's the internal ones that can." I understand that your case is a little different in your not having visible metastisized internal mets (That can currently been on scans.) This does not mean that a few cells have not already spread and have just not grown to the detectable size. The one on my neck was left to use aws a guide and as a reason to not have an excessive number of radiation scans.
It is possible that removal would "cure" your husband. It is also possible and likely that a few cells have spread beyond the local area. I like the Idea of trying a systemic treatment due to the two re-occurnces that he has had. I would "GO FOR IT!" and follow Dr Days advice in this case.
P.S. The one on my neck is just a smal, flat dark spot now. It no longer stands out a 1/4 inch like it once did.
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- May 20, 2014 at 1:01 am
As Brian says, It can always be surgically removed later, when you may not be elgible for systemic treatment because nothing shows on scans.
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- May 20, 2014 at 1:01 am
As Brian says, It can always be surgically removed later, when you may not be elgible for systemic treatment because nothing shows on scans.
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- May 20, 2014 at 1:01 am
As Brian says, It can always be surgically removed later, when you may not be elgible for systemic treatment because nothing shows on scans.
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- May 20, 2014 at 3:59 am
My husband has a similar situation. We have been diagnosed with a 3b or 3c.. Unknown primary, Nodular melanoma. WLE in December with SNLB- Lymph node clear. Had a met occur on the edge of the scar in April and biopsied. Which actually ended up removing the met. Margins clear on biopsy. We are BRAF positive. Where are consulting a second opinion at MD Anderson. Thoughts on PD-1? Yervoy, etc?
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- May 20, 2014 at 3:59 am
My husband has a similar situation. We have been diagnosed with a 3b or 3c.. Unknown primary, Nodular melanoma. WLE in December with SNLB- Lymph node clear. Had a met occur on the edge of the scar in April and biopsied. Which actually ended up removing the met. Margins clear on biopsy. We are BRAF positive. Where are consulting a second opinion at MD Anderson. Thoughts on PD-1? Yervoy, etc?
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- May 20, 2014 at 4:44 pm
Someone can correct me if I'm wrong, but I believe at this time you have to have measurable disease (meaning mets) in order to get systemic treatment for stage III. When my dad had his second recurrence removed from his scar, Dr. O'Day (whom we started seeing after the fact) said that it was too bad it was removed because if it was still there he would have been able to start him on Yervoy then. My dad is BRAF negative so that isn't an option.
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- May 20, 2014 at 6:48 pm
Check out this thread Ozzie. For stage IV NED it is possible to get yervoy but very difficult. For tage III NED I"m guessing it would almost be impossible to get insurance to pay for it.
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- May 20, 2014 at 6:48 pm
Check out this thread Ozzie. For stage IV NED it is possible to get yervoy but very difficult. For tage III NED I"m guessing it would almost be impossible to get insurance to pay for it.
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- May 20, 2014 at 6:48 pm
Check out this thread Ozzie. For stage IV NED it is possible to get yervoy but very difficult. For tage III NED I"m guessing it would almost be impossible to get insurance to pay for it.
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- May 20, 2014 at 4:44 pm
Someone can correct me if I'm wrong, but I believe at this time you have to have measurable disease (meaning mets) in order to get systemic treatment for stage III. When my dad had his second recurrence removed from his scar, Dr. O'Day (whom we started seeing after the fact) said that it was too bad it was removed because if it was still there he would have been able to start him on Yervoy then. My dad is BRAF negative so that isn't an option.
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- May 20, 2014 at 4:44 pm
Someone can correct me if I'm wrong, but I believe at this time you have to have measurable disease (meaning mets) in order to get systemic treatment for stage III. When my dad had his second recurrence removed from his scar, Dr. O'Day (whom we started seeing after the fact) said that it was too bad it was removed because if it was still there he would have been able to start him on Yervoy then. My dad is BRAF negative so that isn't an option.
-
- May 20, 2014 at 3:59 am
My husband has a similar situation. We have been diagnosed with a 3b or 3c.. Unknown primary, Nodular melanoma. WLE in December with SNLB- Lymph node clear. Had a met occur on the edge of the scar in April and biopsied. Which actually ended up removing the met. Margins clear on biopsy. We are BRAF positive. Where are consulting a second opinion at MD Anderson. Thoughts on PD-1? Yervoy, etc?
-
- May 20, 2014 at 12:58 am
I have all resectable mets except one removed. I have many un-resectable mets. 5 years ago when my mets started growing wildly again, I had two resectable mets and innumerable new internal, non-resectable mets. One was removed. I wanted to try a treatment that is not FDA approved for Melanoma. I convinced my Melanoma Specialist Oncologist to try what I wanted. He asked, IF I minded leaving the one on my neck to use as a guide as to what was likely happening to the innumerable ones inside me. QUOTE "The surface one isn't what will kill you it's the internal ones that can." I understand that your case is a little different in your not having visible metastisized internal mets (That can currently been on scans.) This does not mean that a few cells have not already spread and have just not grown to the detectable size. The one on my neck was left to use aws a guide and as a reason to not have an excessive number of radiation scans.
It is possible that removal would "cure" your husband. It is also possible and likely that a few cells have spread beyond the local area. I like the Idea of trying a systemic treatment due to the two re-occurnces that he has had. I would "GO FOR IT!" and follow Dr Days advice in this case.
P.S. The one on my neck is just a smal, flat dark spot now. It no longer stands out a 1/4 inch like it once did.
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- May 20, 2014 at 11:57 am
I usually think that removing tumors is the best thing to do, but not always. In this case, I have a lot of respect for Dr. O'Day's opinion and would listen to his advice. In addtion, your father had a pretty deep primary melanoma, quite a few positive nodes and he has already had recurrence so he is at increased risk for progression. It makes sense to me to go with a systemic treatment now.
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- May 20, 2014 at 11:57 am
I usually think that removing tumors is the best thing to do, but not always. In this case, I have a lot of respect for Dr. O'Day's opinion and would listen to his advice. In addtion, your father had a pretty deep primary melanoma, quite a few positive nodes and he has already had recurrence so he is at increased risk for progression. It makes sense to me to go with a systemic treatment now.
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- May 20, 2014 at 4:40 pm
Thank you all for your input! Yes, we realize that there is a high likelihood that it may spread beyond the local area and with that in mind the systemic approach absolutely makes sense. My parents have decided to consult with a melanoma surgical oncologist as a second opinion just to feel whole with Dr. O'Day's decision to leave the existing mets and treat with Yervoy (already one dose in).
Again, your input is invaluable and much appreciated!
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- May 20, 2014 at 4:40 pm
Thank you all for your input! Yes, we realize that there is a high likelihood that it may spread beyond the local area and with that in mind the systemic approach absolutely makes sense. My parents have decided to consult with a melanoma surgical oncologist as a second opinion just to feel whole with Dr. O'Day's decision to leave the existing mets and treat with Yervoy (already one dose in).
Again, your input is invaluable and much appreciated!
-
- May 20, 2014 at 4:40 pm
Thank you all for your input! Yes, we realize that there is a high likelihood that it may spread beyond the local area and with that in mind the systemic approach absolutely makes sense. My parents have decided to consult with a melanoma surgical oncologist as a second opinion just to feel whole with Dr. O'Day's decision to leave the existing mets and treat with Yervoy (already one dose in).
Again, your input is invaluable and much appreciated!
-
- May 20, 2014 at 11:57 am
I usually think that removing tumors is the best thing to do, but not always. In this case, I have a lot of respect for Dr. O'Day's opinion and would listen to his advice. In addtion, your father had a pretty deep primary melanoma, quite a few positive nodes and he has already had recurrence so he is at increased risk for progression. It makes sense to me to go with a systemic treatment now.
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