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So sorry to hear of the diagnosis. 

My husband was diagnosed in Nov 2012 with Stage 4 mucosal melanoma in his sinus with mets in a number of bones (age 58).  We have Kaiser (Oakland).  We set up an apt with Dr Daud at UCSF and paid out of pocket (~$400), feel like it was worth it.  We also paid out-of-pocket for the genetic sequencing since it seemed that Kaiser was unwilling or slow about it and we were anxious to proceed, maybe should have pushed Kaiser instead, but paid ~$2500.  The consulting gave him more to work with in deciding to request IPI through Kaiser.  He is now under treatment on IPI through Kaiser (Richmond and Oakland), with Dr. Gordon, covered entirely – the cost is around $30,000 per treatment so the insurance focus was on getting that within the covered system.   Re responses to treatment – My husband is tired and has significant overall pain, some days he works half a day and others he sleeps essentially all day.  We can't tell how much of the fatigue and pain is due to the disease and how much is the treatment.    So far no clear side effect reactions to the treatment, i.e.., no colitis, etc.

Hope that helps a little – best wishes.

So sorry to hear of the diagnosis. 

My husband was diagnosed in Nov 2012 with Stage 4 mucosal melanoma in his sinus with mets in a number of bones (age 58).  We have Kaiser (Oakland).  We set up an apt with Dr Daud at UCSF and paid out of pocket (~$400), feel like it was worth it.  We also paid out-of-pocket for the genetic sequencing since it seemed that Kaiser was unwilling or slow about it and we were anxious to proceed, maybe should have pushed Kaiser instead, but paid ~$2500.  The consulting gave him more to work with in deciding to request IPI through Kaiser.  He is now under treatment on IPI through Kaiser (Richmond and Oakland), with Dr. Gordon, covered entirely – the cost is around $30,000 per treatment so the insurance focus was on getting that within the covered system.   Re responses to treatment – My husband is tired and has significant overall pain, some days he works half a day and others he sleeps essentially all day.  We can't tell how much of the fatigue and pain is due to the disease and how much is the treatment.    So far no clear side effect reactions to the treatment, i.e.., no colitis, etc.

Hope that helps a little – best wishes.

So sorry to hear of the diagnosis. 

My husband was diagnosed in Nov 2012 with Stage 4 mucosal melanoma in his sinus with mets in a number of bones (age 58).  We have Kaiser (Oakland).  We set up an apt with Dr Daud at UCSF and paid out of pocket (~$400), feel like it was worth it.  We also paid out-of-pocket for the genetic sequencing since it seemed that Kaiser was unwilling or slow about it and we were anxious to proceed, maybe should have pushed Kaiser instead, but paid ~$2500.  The consulting gave him more to work with in deciding to request IPI through Kaiser.  He is now under treatment on IPI through Kaiser (Richmond and Oakland), with Dr. Gordon, covered entirely – the cost is around $30,000 per treatment so the insurance focus was on getting that within the covered system.   Re responses to treatment – My husband is tired and has significant overall pain, some days he works half a day and others he sleeps essentially all day.  We can't tell how much of the fatigue and pain is due to the disease and how much is the treatment.    So far no clear side effect reactions to the treatment, i.e.., no colitis, etc.

Hope that helps a little – best wishes.

Thanks for all the coments, very encouraging. 

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good. I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it. I was encouraged by teh perspective that he can start it and if its too devastating he can quit.

We have heard about a trial with higher doses of Ipi and GM-CSF. Anyone know about any responses/reactions to that combo? Thanks all. I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks. Thanks again, I really appreciate hearing from others.

Thanks for all the coments, very encouraging. 

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good. I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it. I was encouraged by teh perspective that he can start it and if its too devastating he can quit.

We have heard about a trial with higher doses of Ipi and GM-CSF. Anyone know about any responses/reactions to that combo? Thanks all. I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks. Thanks again, I really appreciate hearing from others.

Thanks for all the coments, very encouraging. 

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good. I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it. I was encouraged by teh perspective that he can start it and if its too devastating he can quit.

We have heard about a trial with higher doses of Ipi and GM-CSF. Anyone know about any responses/reactions to that combo? Thanks all. I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks. Thanks again, I really appreciate hearing from others.

THanks for all teh coments, very encouraging. 

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good. I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it. I was encouraged by teh perspective that he can start it and if its too devastating he can quit.

We have heard about a trial with higher doses of Ipi and GM-CSF. Anyone know about any responses/reactions to that combo? Thanks all. I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks. Thanks again, I really appreciate hearing from others.

THanks for all teh coments, very encouraging. 

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good. I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it. I was encouraged by teh perspective that he can start it and if its too devastating he can quit.

We have heard about a trial with higher doses of Ipi and GM-CSF. Anyone know about any responses/reactions to that combo? Thanks all. I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks. Thanks again, I really appreciate hearing from others.

THanks for all teh coments, very encouraging. 

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good. I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it. I was encouraged by teh perspective that he can start it and if its too devastating he can quit.

We have heard about a trial with higher doses of Ipi and GM-CSF. Anyone know about any responses/reactions to that combo? Thanks all. I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks. Thanks again, I really appreciate hearing from others.

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

Kyle,

Thanks so much for responding.  You've given me a lot to think about. 

We did get a second opinion – from Dr Daud at UCSF.  Dr. Daud thinks that my husband should go straight into IPI.  Metastized mucosal melanoma is extremely aggressive, he is stage 4 and while they won't give him a time frame, they said they would not disagree with his estimate of 3 months to 3 years. 

 I would like to hear how your experience at Riverside went –  my husband feels like the IL-2 treatments at Riverside would make his life consist of getting hospital treatments for a week, then a week or two of recovering, then a week of maybe not feeling bad, then back away from home in hospital treatment. Sounds like it would be good to contact Dr. Gailani regarding relative effectiveness for his particular condition. 

The prognosis is not good under either IL-2 or IPI, and he is thinking he would much rather be home more of the time, with work, family and friends.   He is thinking about whether it might it be better to go straight to the IPI.

Its great to hear that you are surviving so far, that is all anyone ever gets I guess.  We are still in shock, this was only diagnosed a month ago, at stage 4.

Thank you so much.   

Kyle,

Thanks so much for responding.  You've given me a lot to think about. 

We did get a second opinion – from Dr Daud at UCSF.  Dr. Daud thinks that my husband should go straight into IPI.  Metastized mucosal melanoma is extremely aggressive, he is stage 4 and while they won't give him a time frame, they said they would not disagree with his estimate of 3 months to 3 years. 

 I would like to hear how your experience at Riverside went –  my husband feels like the IL-2 treatments at Riverside would make his life consist of getting hospital treatments for a week, then a week or two of recovering, then a week of maybe not feeling bad, then back away from home in hospital treatment. Sounds like it would be good to contact Dr. Gailani regarding relative effectiveness for his particular condition. 

The prognosis is not good under either IL-2 or IPI, and he is thinking he would much rather be home more of the time, with work, family and friends.   He is thinking about whether it might it be better to go straight to the IPI.

Its great to hear that you are surviving so far, that is all anyone ever gets I guess.  We are still in shock, this was only diagnosed a month ago, at stage 4.

Thank you so much.   

Kyle,

Thanks so much for responding.  You've given me a lot to think about. 

We did get a second opinion – from Dr Daud at UCSF.  Dr. Daud thinks that my husband should go straight into IPI.  Metastized mucosal melanoma is extremely aggressive, he is stage 4 and while they won't give him a time frame, they said they would not disagree with his estimate of 3 months to 3 years. 

 I would like to hear how your experience at Riverside went –  my husband feels like the IL-2 treatments at Riverside would make his life consist of getting hospital treatments for a week, then a week or two of recovering, then a week of maybe not feeling bad, then back away from home in hospital treatment. Sounds like it would be good to contact Dr. Gailani regarding relative effectiveness for his particular condition. 

The prognosis is not good under either IL-2 or IPI, and he is thinking he would much rather be home more of the time, with work, family and friends.   He is thinking about whether it might it be better to go straight to the IPI.

Its great to hear that you are surviving so far, that is all anyone ever gets I guess.  We are still in shock, this was only diagnosed a month ago, at stage 4.

Thank you so much.