› Forums › General Melanoma Community › Next Steps for Stage III?
- This topic has 33 replies, 6 voices, and was last updated 10 years, 3 months ago by
JerryfromFauq.
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- December 27, 2013 at 10:38 pm
My husband had surgery in October -removal of melanoma on the bottom of his foot, and 8 lymph nodes in the groin area. Subsequently another melanoma appeared near the first, and was removed in an in-office procedure.
As he healed, we began screening for the interferon-ipi randomized trial. But that PET scan, just 90 days after the first, showed cancer has now spread to more lymph nodes. This kicks us from the trial – so disappointing. In two weeks he will have surgery to remove more lymph nodes. We are told a two-hour procedure and at least one night hospital stay. So it seems like a serious procedure.
What next? Does anyone know what this quick recurrence means in terms of possible further spread? I assume we may get back in line for the randomized trial once he is healed from this surgery. Based on previously experience, that is likely to be at least a couple of months – which seems like a long time to wait.
Thanks so much for insights, thoughts . . . . and prayers! mm
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- December 28, 2013 at 4:09 am
The Pathology report of the initial melanoma is important to post on the profile. After that, people would be able to give more information to you. Is the second set of nodes located in the same area as the first set of nodes he had removed? If so, Radiation to the area may be recommended. Check back frequently as more will probably answer your question. Good Luck.
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- December 28, 2013 at 5:22 am
Hmmm . . . I'm not sure what you mean by the pathology report of the first set? I can tell you that in six of the nodes all normal tissue had been replaced by cancerous tissue, and eight had cancer involvement. I'll add that to the profile. And yes, the second set is in the same area as the first. Radiation was not suggested as an option. He is already scheduled for surgery on the second set.
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- December 28, 2013 at 5:22 am
Hmmm . . . I'm not sure what you mean by the pathology report of the first set? I can tell you that in six of the nodes all normal tissue had been replaced by cancerous tissue, and eight had cancer involvement. I'll add that to the profile. And yes, the second set is in the same area as the first. Radiation was not suggested as an option. He is already scheduled for surgery on the second set.
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- December 28, 2013 at 5:22 am
Hmmm . . . I'm not sure what you mean by the pathology report of the first set? I can tell you that in six of the nodes all normal tissue had been replaced by cancerous tissue, and eight had cancer involvement. I'll add that to the profile. And yes, the second set is in the same area as the first. Radiation was not suggested as an option. He is already scheduled for surgery on the second set.
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- December 28, 2013 at 4:09 am
The Pathology report of the initial melanoma is important to post on the profile. After that, people would be able to give more information to you. Is the second set of nodes located in the same area as the first set of nodes he had removed? If so, Radiation to the area may be recommended. Check back frequently as more will probably answer your question. Good Luck.
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- December 28, 2013 at 4:09 am
The Pathology report of the initial melanoma is important to post on the profile. After that, people would be able to give more information to you. Is the second set of nodes located in the same area as the first set of nodes he had removed? If so, Radiation to the area may be recommended. Check back frequently as more will probably answer your question. Good Luck.
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- December 28, 2013 at 5:42 am
Hi Michele,
i agree…postingmthempathology will lead to more focused responses. My lymph node removal sounds like your husband's , both in the amount of time for the surgery and the 1-2 days of recovery. Maybe the first was a sentinel node biopsy and this is next procedure is a complete lymph node dissection? Also, make sure your husbands oncologist is a melano a specialist. It's a tricky disease and having a specialist is important. Good luck! Once the surgery is completed, your options relative to adjuvant treatment and clinical trials will be clearer. Best wishes for your husband's upcoming surgery and for a complete recovery!
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- December 28, 2013 at 5:42 am
Hi Michele,
i agree…postingmthempathology will lead to more focused responses. My lymph node removal sounds like your husband's , both in the amount of time for the surgery and the 1-2 days of recovery. Maybe the first was a sentinel node biopsy and this is next procedure is a complete lymph node dissection? Also, make sure your husbands oncologist is a melano a specialist. It's a tricky disease and having a specialist is important. Good luck! Once the surgery is completed, your options relative to adjuvant treatment and clinical trials will be clearer. Best wishes for your husband's upcoming surgery and for a complete recovery!
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- December 28, 2013 at 5:42 am
Hi Michele,
i agree…postingmthempathology will lead to more focused responses. My lymph node removal sounds like your husband's , both in the amount of time for the surgery and the 1-2 days of recovery. Maybe the first was a sentinel node biopsy and this is next procedure is a complete lymph node dissection? Also, make sure your husbands oncologist is a melano a specialist. It's a tricky disease and having a specialist is important. Good luck! Once the surgery is completed, your options relative to adjuvant treatment and clinical trials will be clearer. Best wishes for your husband's upcoming surgery and for a complete recovery!
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- December 28, 2013 at 8:22 am
Michele, is he seeing melanoma specialist Oncologist? My mel was found in my Lymph nodes by the GP and local Surgeon's office only afater I found the huge, rapidly growing groi I had a 7 hour lymph node operation, both inside and outside the omentum. and stayed in the hospital for several days. Had two dranige tubes and "gernades attached . (one for a couple of months.) They sent me home from the hospital quicker than planned because they often could not find me (I liked to wander.) Read my Profile to get a amore complete understaanding of my story. Seems I was at Stge Iv immediaatedly after the major lymph node operation.
I will jump ahead and urge that y'all get the tumor tested for c-kit. Many Acral Lentiogamous Melanoma tumors contain either the C-kit oncoprotein or one of the C-kit DNA mutations. There are at least 4 targeted treatments that stand a chance of stoping reproduction of the c-kit tumor cells.
(Most are approved for other cancers, not YET approved for c-kit Melanoma.) -
- December 28, 2013 at 8:22 am
Michele, is he seeing melanoma specialist Oncologist? My mel was found in my Lymph nodes by the GP and local Surgeon's office only afater I found the huge, rapidly growing groi I had a 7 hour lymph node operation, both inside and outside the omentum. and stayed in the hospital for several days. Had two dranige tubes and "gernades attached . (one for a couple of months.) They sent me home from the hospital quicker than planned because they often could not find me (I liked to wander.) Read my Profile to get a amore complete understaanding of my story. Seems I was at Stge Iv immediaatedly after the major lymph node operation.
I will jump ahead and urge that y'all get the tumor tested for c-kit. Many Acral Lentiogamous Melanoma tumors contain either the C-kit oncoprotein or one of the C-kit DNA mutations. There are at least 4 targeted treatments that stand a chance of stoping reproduction of the c-kit tumor cells.
(Most are approved for other cancers, not YET approved for c-kit Melanoma.) -
- December 28, 2013 at 8:22 am
Michele, is he seeing melanoma specialist Oncologist? My mel was found in my Lymph nodes by the GP and local Surgeon's office only afater I found the huge, rapidly growing groi I had a 7 hour lymph node operation, both inside and outside the omentum. and stayed in the hospital for several days. Had two dranige tubes and "gernades attached . (one for a couple of months.) They sent me home from the hospital quicker than planned because they often could not find me (I liked to wander.) Read my Profile to get a amore complete understaanding of my story. Seems I was at Stge Iv immediaatedly after the major lymph node operation.
I will jump ahead and urge that y'all get the tumor tested for c-kit. Many Acral Lentiogamous Melanoma tumors contain either the C-kit oncoprotein or one of the C-kit DNA mutations. There are at least 4 targeted treatments that stand a chance of stoping reproduction of the c-kit tumor cells.
(Most are approved for other cancers, not YET approved for c-kit Melanoma.) -
- December 28, 2013 at 4:13 pm
Thank you both for your comments! I'm not actually sure what further info to post in the profile, I will look at the surgeon's report and see if there is something further there.
To be more clear – he had early biopsies which showed cancer. Then in October he had complete removal of nodes, drainage tube for a whole month, dealing with major leg swelling issues, the works. We were in line for the randomized ipi/interferon trial, but kicked when PET scan showed cancer had spread to more nodes.
Now he is having the further major surgery to have more lymph nodes removed.
We see a surgical oncologist and a medical oncologist at Sutter Roseville near Sacramento. Our GP saw the melanoma early, thought it was some sort of wound, and treated it with first aid for months. I never want to see him again!
Our medical oncologist is young, but is working in coordination with a melanoma specialist in San Francisco – Dr. David Minor. A doctor friend said he could get us referred to specialists at Sloan Kettering or MD Anderson – but we're not sure it makes sense to see someone who is hundreds/thousands of miles away – and with the current leg swelling issues, my husband can't really get on a plane anyway.
I will ask about the c-kit.
Thank you for input!
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- December 28, 2013 at 4:13 pm
Thank you both for your comments! I'm not actually sure what further info to post in the profile, I will look at the surgeon's report and see if there is something further there.
To be more clear – he had early biopsies which showed cancer. Then in October he had complete removal of nodes, drainage tube for a whole month, dealing with major leg swelling issues, the works. We were in line for the randomized ipi/interferon trial, but kicked when PET scan showed cancer had spread to more nodes.
Now he is having the further major surgery to have more lymph nodes removed.
We see a surgical oncologist and a medical oncologist at Sutter Roseville near Sacramento. Our GP saw the melanoma early, thought it was some sort of wound, and treated it with first aid for months. I never want to see him again!
Our medical oncologist is young, but is working in coordination with a melanoma specialist in San Francisco – Dr. David Minor. A doctor friend said he could get us referred to specialists at Sloan Kettering or MD Anderson – but we're not sure it makes sense to see someone who is hundreds/thousands of miles away – and with the current leg swelling issues, my husband can't really get on a plane anyway.
I will ask about the c-kit.
Thank you for input!
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- December 30, 2013 at 5:22 am
Hi Michele,
The people I've met here in SF who have been under Dr. Minor's care, the melanoma specialist your surgical oncologist is coordinating with, all speak very highly of him and what he has made happen for them.
If SF is a trip that is more doable, sometimes (especially if there's a big decision point coming up in a treatment plan) face-to-face communication can be better to answer your questions than talking "through" your lead oncologist, even as he coordinates (which is also very good) with Dr. Minor.
If you end up wanting a second opinion (also very useful) outside of Sutter, one place would be UCSF across town. Also, in case you and your husband are ever interested and are in SF at the right time, there is a melanoma patient support group that meets at CPMC for 90 minutes every month.
Best, Kyle
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- December 30, 2013 at 5:22 am
Hi Michele,
The people I've met here in SF who have been under Dr. Minor's care, the melanoma specialist your surgical oncologist is coordinating with, all speak very highly of him and what he has made happen for them.
If SF is a trip that is more doable, sometimes (especially if there's a big decision point coming up in a treatment plan) face-to-face communication can be better to answer your questions than talking "through" your lead oncologist, even as he coordinates (which is also very good) with Dr. Minor.
If you end up wanting a second opinion (also very useful) outside of Sutter, one place would be UCSF across town. Also, in case you and your husband are ever interested and are in SF at the right time, there is a melanoma patient support group that meets at CPMC for 90 minutes every month.
Best, Kyle
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- December 30, 2013 at 5:22 am
Hi Michele,
The people I've met here in SF who have been under Dr. Minor's care, the melanoma specialist your surgical oncologist is coordinating with, all speak very highly of him and what he has made happen for them.
If SF is a trip that is more doable, sometimes (especially if there's a big decision point coming up in a treatment plan) face-to-face communication can be better to answer your questions than talking "through" your lead oncologist, even as he coordinates (which is also very good) with Dr. Minor.
If you end up wanting a second opinion (also very useful) outside of Sutter, one place would be UCSF across town. Also, in case you and your husband are ever interested and are in SF at the right time, there is a melanoma patient support group that meets at CPMC for 90 minutes every month.
Best, Kyle
-
- December 28, 2013 at 4:13 pm
Thank you both for your comments! I'm not actually sure what further info to post in the profile, I will look at the surgeon's report and see if there is something further there.
To be more clear – he had early biopsies which showed cancer. Then in October he had complete removal of nodes, drainage tube for a whole month, dealing with major leg swelling issues, the works. We were in line for the randomized ipi/interferon trial, but kicked when PET scan showed cancer had spread to more nodes.
Now he is having the further major surgery to have more lymph nodes removed.
We see a surgical oncologist and a medical oncologist at Sutter Roseville near Sacramento. Our GP saw the melanoma early, thought it was some sort of wound, and treated it with first aid for months. I never want to see him again!
Our medical oncologist is young, but is working in coordination with a melanoma specialist in San Francisco – Dr. David Minor. A doctor friend said he could get us referred to specialists at Sloan Kettering or MD Anderson – but we're not sure it makes sense to see someone who is hundreds/thousands of miles away – and with the current leg swelling issues, my husband can't really get on a plane anyway.
I will ask about the c-kit.
Thank you for input!
-
- December 29, 2013 at 8:15 pm
First is he BRAF positive? If so you might want to get on Zelboraf or the Mekinist / Tafinlar. The reason I say that is they are supposed to work fast. However Zelboraf never shrank any of my tumors but it has for lots of people. However if you do Zelboraf be careful with the side affects especially sun light. The other 2 I'm not aware of because once you do a BRAF med and it quits working taking the others does pretty much nothing according to what I was told. All 3 are FDA approved so any dr can do them individually. You only need a trial for the combo. I heard the Mekinist/Tafinlar/Yervoy can be toxic together but there is trials for them.
For Yervoy(ipi) or Nivo they are the longer term meds that work with your immune system and take awhile to work. Yervoy is FDA approved so any dr can do it. I get my 3rd dose of it tomorrow. Nivo is still in trials however if you can get in a ipi/nivo trial that might be an option. I've heard a lot of good things about it and wish I was in it. However these meds usually take a long time to work.
As far as an oncologist I would suggest going directly to a local one that is a melanoma specialist if you can. Also if you can I would back that up with my own consultation with a dr at an even bigger out of town clinic with a melanoma specialization like Mayo, MD Anderson, Sarah Cannon, etc.
Sorry you are going through this too and good luck.
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- December 29, 2013 at 8:15 pm
First is he BRAF positive? If so you might want to get on Zelboraf or the Mekinist / Tafinlar. The reason I say that is they are supposed to work fast. However Zelboraf never shrank any of my tumors but it has for lots of people. However if you do Zelboraf be careful with the side affects especially sun light. The other 2 I'm not aware of because once you do a BRAF med and it quits working taking the others does pretty much nothing according to what I was told. All 3 are FDA approved so any dr can do them individually. You only need a trial for the combo. I heard the Mekinist/Tafinlar/Yervoy can be toxic together but there is trials for them.
For Yervoy(ipi) or Nivo they are the longer term meds that work with your immune system and take awhile to work. Yervoy is FDA approved so any dr can do it. I get my 3rd dose of it tomorrow. Nivo is still in trials however if you can get in a ipi/nivo trial that might be an option. I've heard a lot of good things about it and wish I was in it. However these meds usually take a long time to work.
As far as an oncologist I would suggest going directly to a local one that is a melanoma specialist if you can. Also if you can I would back that up with my own consultation with a dr at an even bigger out of town clinic with a melanoma specialization like Mayo, MD Anderson, Sarah Cannon, etc.
Sorry you are going through this too and good luck.
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- December 29, 2013 at 8:15 pm
First is he BRAF positive? If so you might want to get on Zelboraf or the Mekinist / Tafinlar. The reason I say that is they are supposed to work fast. However Zelboraf never shrank any of my tumors but it has for lots of people. However if you do Zelboraf be careful with the side affects especially sun light. The other 2 I'm not aware of because once you do a BRAF med and it quits working taking the others does pretty much nothing according to what I was told. All 3 are FDA approved so any dr can do them individually. You only need a trial for the combo. I heard the Mekinist/Tafinlar/Yervoy can be toxic together but there is trials for them.
For Yervoy(ipi) or Nivo they are the longer term meds that work with your immune system and take awhile to work. Yervoy is FDA approved so any dr can do it. I get my 3rd dose of it tomorrow. Nivo is still in trials however if you can get in a ipi/nivo trial that might be an option. I've heard a lot of good things about it and wish I was in it. However these meds usually take a long time to work.
As far as an oncologist I would suggest going directly to a local one that is a melanoma specialist if you can. Also if you can I would back that up with my own consultation with a dr at an even bigger out of town clinic with a melanoma specialization like Mayo, MD Anderson, Sarah Cannon, etc.
Sorry you are going through this too and good luck.
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- January 2, 2014 at 2:41 am
Thank you! He is not BRAF positive so we can't do that. As far as the ipi, we've been told it is only available to us within a randomized trial. We were kicked from the trial when the melanoma came back, but may be eligible again after this next surgery.
It seems here that some people are getting ipi directly, but our doc has told us this is not possible in our case. So I'm not sure what makes the difference . . . . this has been confusing me.
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- January 2, 2014 at 2:41 am
Thank you! He is not BRAF positive so we can't do that. As far as the ipi, we've been told it is only available to us within a randomized trial. We were kicked from the trial when the melanoma came back, but may be eligible again after this next surgery.
It seems here that some people are getting ipi directly, but our doc has told us this is not possible in our case. So I'm not sure what makes the difference . . . . this has been confusing me.
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- January 2, 2014 at 8:58 pm
http://www.hindawi.com/journals/scientifica/2013/857519/
The expected side effects may impact a decision to take Ipi (Yervow), but any Oncologist should be able to prescribe it since it is FDA approved. Some may be leary of doing so because it can have bad and permenant side effects. It can also save lives. i would only want to receive it from an Oncologist that has experience with handling its side effects. Do not understand the requirement tobe in a randomized trial unless that facility is running one and needs more particibants.
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- January 2, 2014 at 8:58 pm
http://www.hindawi.com/journals/scientifica/2013/857519/
The expected side effects may impact a decision to take Ipi (Yervow), but any Oncologist should be able to prescribe it since it is FDA approved. Some may be leary of doing so because it can have bad and permenant side effects. It can also save lives. i would only want to receive it from an Oncologist that has experience with handling its side effects. Do not understand the requirement tobe in a randomized trial unless that facility is running one and needs more particibants.
-
- January 2, 2014 at 8:58 pm
http://www.hindawi.com/journals/scientifica/2013/857519/
The expected side effects may impact a decision to take Ipi (Yervow), but any Oncologist should be able to prescribe it since it is FDA approved. Some may be leary of doing so because it can have bad and permenant side effects. It can also save lives. i would only want to receive it from an Oncologist that has experience with handling its side effects. Do not understand the requirement tobe in a randomized trial unless that facility is running one and needs more particibants.
-
- January 2, 2014 at 2:41 am
Thank you! He is not BRAF positive so we can't do that. As far as the ipi, we've been told it is only available to us within a randomized trial. We were kicked from the trial when the melanoma came back, but may be eligible again after this next surgery.
It seems here that some people are getting ipi directly, but our doc has told us this is not possible in our case. So I'm not sure what makes the difference . . . . this has been confusing me.
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