How many with Stage 4 have had results with IPI (Yervoy)

Wendy,

My husband has metasticized mucosal melanoma (mets in his bones only). We go to Kaiser in Oakland. His Kaiser oncologist is recommending he go to Riverside for intensive interleukin.  Its not clear which treatment (Interleukin or Ipi) is more effective for his condition (neither is very good, tragically), but he would much rather be at home between ipi treatments than in the hospital for a week out of every month in Riverside for interleukin treatments – so he can work, be with family and friends, etc.  Did you have to make the case to Kaiser, or did they offer Ipi? Any guidance on how to work with Kaiser?  Seeing your post, maybe we coudl go to Kaiser in San Jose, then coudl still stay at home.  Thanks for any thoughts. 

I did IL-2 in Riverside at Kaiser in 2010, before IPI was approved. I was referred from Oakland Kaiser at the time myself. In retrospect, the sooner I would have establish a direct relationship to Riverside (Dr. Gailani and his R.N. Robin Green), the better as I would be getting my questions answered without the filter of the local non-melanoma-specializing oncologist I was seeing at Oakland. I am glad she did get me down to Riverside and Dr. Gailain fairly quickly. Not sure if you can talk to Dr. Gailani's office sooner than your first appointment down there, but in the main office phone for them is 951-353-4558. It's so much easier to talking things over directly with THE melanoma specialist at Kaiser, or at least in our part of the country.

I've read that they're finding that people who don't respond to IL-2, still respond to IPI in about the same numbers as patients who have not taken IL-2 yet. So it's not necessarily the same subset of people who respond to one or the other, so if you can hit both treatments with Kaiser (if needed), that could possibly almost double your odds of response. With the caveat that I don't know how mucosal melanoma is different from non-mucosal melanoma, nor how bone mets typically respond — both things probably best discussed (directly if possible!) with Dr. Gailani. 

One possible view would be, if your husband is well enough to handle the more consistently harsher treatment of IL-2 now, then if he's not a responder to that, perhaps IPI could be next in line treatment. Dr. Gailani and his team are extremely experinced and an incredible resource to take advantage of at Kaiser.

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.   

While I was still with Kaiser in 2010, I got second opinions from Dr. Daud as well. Kaiser Riverside had given me 2 choices of treatment, whereas Dr. Daud recommended one of those 2 choices over the other. In my case, IL-2 was the treatment that both Kaiser and Dr. Daud coincided on, so I went with that. Obviously mine is a different case (and a different time — if IPI had been FDA approved in 2010, which it wasn't, IPI would have been a third choice to consider). These are tough decisions. I was trying to find the best oddsmaker or combination of oddsmakers to go with. 

As far as the IL-2 experience, I would say IL-2 is more consistently a rougher treatment than Yervoy, that's why it's done in an ICU or ICU-like setting unlike IPI which is outpatient. However, it's possibly less likely to give the severest complications that IPI can in some cases (not a huge proportion of cases but a few). I was very tired for the week in between IL-2 cycles 1+2, for a couple weeks after cycle 2, and then a repeat of the same thing for cycles 3 and 4. So I think IL-2 is pretty much as you and your husband are picturing it. 

As far as IPI, the side effects can be way more variable in either direction, milder in most cases, but with some very severe reactions as well, for example some others on this forum have been hospitalized for weeks fighting severe colitis. I was lucky to not get any major immune complications for my 4 IPI cycles not at Kaiser in 2011. Possibly a tiny bit of the severity also depends on the skill of the oncologist team treating with Yervoy to be (and to have you the patient be) on top of the symptoms right away, especially colitis — there appears to be some variance in how quickly different oncologists act when symptoms start appearing with this still quite new drug. 

I do know Kaiser does Yervoy in-house, at least at Riverside they've been doing "tons" since FDA approval in 2011, per a recent short email I had with Dr. Gailani's nurse. IPI is probably done closer than Riverside by Kaiser too, I think I've read, since it's outpatient.

Did Dr. Daud have any suggestions about any possible clinical trials for mucosal melanoma, if there are any? One other thing about Kaiser is that Dr. Gailiani's team seemed much more informed and willing to talk about clinical trials for Kaiser patients than Kaiser Oncology probably is on average. 

Also, if you have any option to change insurers (it's the end of open season for some of us), and have any desire to do so, IL-2 is done locally at both UCSF and CPMC in SF, in the world outside of the Kaiser universe.

One last thing, there is a melanoma support group that has been meeting (but just lost its coordinator, hopefully it will continue meeting without interruption, 3rd Tuesday of every month at CPMC. For more info, contact Linda Gates at: 415-923-3155.

While I was still with Kaiser in 2010, I got second opinions from Dr. Daud as well. Kaiser Riverside had given me 2 choices of treatment, whereas Dr. Daud recommended one of those 2 choices over the other. In my case, IL-2 was the treatment that both Kaiser and Dr. Daud coincided on, so I went with that. Obviously mine is a different case (and a different time — if IPI had been FDA approved in 2010, which it wasn't, IPI would have been a third choice to consider). These are tough decisions. I was trying to find the best oddsmaker or combination of oddsmakers to go with. 

As far as the IL-2 experience, I would say IL-2 is more consistently a rougher treatment than Yervoy, that's why it's done in an ICU or ICU-like setting unlike IPI which is outpatient. However, it's possibly less likely to give the severest complications that IPI can in some cases (not a huge proportion of cases but a few). I was very tired for the week in between IL-2 cycles 1+2, for a couple weeks after cycle 2, and then a repeat of the same thing for cycles 3 and 4. So I think IL-2 is pretty much as you and your husband are picturing it. 

As far as IPI, the side effects can be way more variable in either direction, milder in most cases, but with some very severe reactions as well, for example some others on this forum have been hospitalized for weeks fighting severe colitis. I was lucky to not get any major immune complications for my 4 IPI cycles not at Kaiser in 2011. Possibly a tiny bit of the severity also depends on the skill of the oncologist team treating with Yervoy to be (and to have you the patient be) on top of the symptoms right away, especially colitis — there appears to be some variance in how quickly different oncologists act when symptoms start appearing with this still quite new drug. 

I do know Kaiser does Yervoy in-house, at least at Riverside they've been doing "tons" since FDA approval in 2011, per a recent short email I had with Dr. Gailani's nurse. IPI is probably done closer than Riverside by Kaiser too, I think I've read, since it's outpatient.

Did Dr. Daud have any suggestions about any possible clinical trials for mucosal melanoma, if there are any? One other thing about Kaiser is that Dr. Gailiani's team seemed much more informed and willing to talk about clinical trials for Kaiser patients than Kaiser Oncology probably is on average. 

Also, if you have any option to change insurers (it's the end of open season for some of us), and have any desire to do so, IL-2 is done locally at both UCSF and CPMC in SF, in the world outside of the Kaiser universe.

One last thing, there is a melanoma support group that has been meeting (but just lost its coordinator, hopefully it will continue meeting without interruption, 3rd Tuesday of every month at CPMC. For more info, contact Linda Gates at: 415-923-3155.

While I was still with Kaiser in 2010, I got second opinions from Dr. Daud as well. Kaiser Riverside had given me 2 choices of treatment, whereas Dr. Daud recommended one of those 2 choices over the other. In my case, IL-2 was the treatment that both Kaiser and Dr. Daud coincided on, so I went with that. Obviously mine is a different case (and a different time — if IPI had been FDA approved in 2010, which it wasn't, IPI would have been a third choice to consider). These are tough decisions. I was trying to find the best oddsmaker or combination of oddsmakers to go with. 

As far as the IL-2 experience, I would say IL-2 is more consistently a rougher treatment than Yervoy, that's why it's done in an ICU or ICU-like setting unlike IPI which is outpatient. However, it's possibly less likely to give the severest complications that IPI can in some cases (not a huge proportion of cases but a few). I was very tired for the week in between IL-2 cycles 1+2, for a couple weeks after cycle 2, and then a repeat of the same thing for cycles 3 and 4. So I think IL-2 is pretty much as you and your husband are picturing it. 

As far as IPI, the side effects can be way more variable in either direction, milder in most cases, but with some very severe reactions as well, for example some others on this forum have been hospitalized for weeks fighting severe colitis. I was lucky to not get any major immune complications for my 4 IPI cycles not at Kaiser in 2011. Possibly a tiny bit of the severity also depends on the skill of the oncologist team treating with Yervoy to be (and to have you the patient be) on top of the symptoms right away, especially colitis — there appears to be some variance in how quickly different oncologists act when symptoms start appearing with this still quite new drug. 

I do know Kaiser does Yervoy in-house, at least at Riverside they've been doing "tons" since FDA approval in 2011, per a recent short email I had with Dr. Gailani's nurse. IPI is probably done closer than Riverside by Kaiser too, I think I've read, since it's outpatient.

Did Dr. Daud have any suggestions about any possible clinical trials for mucosal melanoma, if there are any? One other thing about Kaiser is that Dr. Gailiani's team seemed much more informed and willing to talk about clinical trials for Kaiser patients than Kaiser Oncology probably is on average. 

Also, if you have any option to change insurers (it's the end of open season for some of us), and have any desire to do so, IL-2 is done locally at both UCSF and CPMC in SF, in the world outside of the Kaiser universe.

One last thing, there is a melanoma support group that has been meeting (but just lost its coordinator, hopefully it will continue meeting without interruption, 3rd Tuesday of every month at CPMC. For more info, contact Linda Gates at: 415-923-3155.

Should probably ask about genetic testing, like for C-KIT mutation. Has he been tested for that? Not sure what mutations are common in mucosal melanoma but is C-KIT one of them? I assume you went through that with UCSF, Kaiser or both?  If the bone tumors are amenalbe to biopsy? 

Should probably ask about genetic testing, like for C-KIT mutation. Has he been tested for that? Not sure what mutations are common in mucosal melanoma but is C-KIT one of them? I assume you went through that with UCSF, Kaiser or both?  If the bone tumors are amenalbe to biopsy? 

Should probably ask about genetic testing, like for C-KIT mutation. Has he been tested for that? Not sure what mutations are common in mucosal melanoma but is C-KIT one of them? I assume you went through that with UCSF, Kaiser or both?  If the bone tumors are amenalbe to biopsy? 

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.

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.

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.   

I did IL-2 in Riverside at Kaiser in 2010, before IPI was approved. I was referred from Oakland Kaiser at the time myself. In retrospect, the sooner I would have establish a direct relationship to Riverside (Dr. Gailani and his R.N. Robin Green), the better as I would be getting my questions answered without the filter of the local non-melanoma-specializing oncologist I was seeing at Oakland. I am glad she did get me down to Riverside and Dr. Gailain fairly quickly. Not sure if you can talk to Dr. Gailani's office sooner than your first appointment down there, but in the main office phone for them is 951-353-4558. It's so much easier to talking things over directly with THE melanoma specialist at Kaiser, or at least in our part of the country.

I've read that they're finding that people who don't respond to IL-2, still respond to IPI in about the same numbers as patients who have not taken IL-2 yet. So it's not necessarily the same subset of people who respond to one or the other, so if you can hit both treatments with Kaiser (if needed), that could possibly almost double your odds of response. With the caveat that I don't know how mucosal melanoma is different from non-mucosal melanoma, nor how bone mets typically respond — both things probably best discussed (directly if possible!) with Dr. Gailani. 

One possible view would be, if your husband is well enough to handle the more consistently harsher treatment of IL-2 now, then if he's not a responder to that, perhaps IPI could be next in line treatment. Dr. Gailani and his team are extremely experinced and an incredible resource to take advantage of at Kaiser.

I did IL-2 in Riverside at Kaiser in 2010, before IPI was approved. I was referred from Oakland Kaiser at the time myself. In retrospect, the sooner I would have establish a direct relationship to Riverside (Dr. Gailani and his R.N. Robin Green), the better as I would be getting my questions answered without the filter of the local non-melanoma-specializing oncologist I was seeing at Oakland. I am glad she did get me down to Riverside and Dr. Gailain fairly quickly. Not sure if you can talk to Dr. Gailani's office sooner than your first appointment down there, but in the main office phone for them is 951-353-4558. It's so much easier to talking things over directly with THE melanoma specialist at Kaiser, or at least in our part of the country.

I've read that they're finding that people who don't respond to IL-2, still respond to IPI in about the same numbers as patients who have not taken IL-2 yet. So it's not necessarily the same subset of people who respond to one or the other, so if you can hit both treatments with Kaiser (if needed), that could possibly almost double your odds of response. With the caveat that I don't know how mucosal melanoma is different from non-mucosal melanoma, nor how bone mets typically respond — both things probably best discussed (directly if possible!) with Dr. Gailani. 

One possible view would be, if your husband is well enough to handle the more consistently harsher treatment of IL-2 now, then if he's not a responder to that, perhaps IPI could be next in line treatment. Dr. Gailani and his team are extremely experinced and an incredible resource to take advantage of at Kaiser.

Wendy,

My husband has metasticized mucosal melanoma (mets in his bones only). We go to Kaiser in Oakland. His Kaiser oncologist is recommending he go to Riverside for intensive interleukin.  Its not clear which treatment (Interleukin or Ipi) is more effective for his condition (neither is very good, tragically), but he would much rather be at home between ipi treatments than in the hospital for a week out of every month in Riverside for interleukin treatments – so he can work, be with family and friends, etc.  Did you have to make the case to Kaiser, or did they offer Ipi? Any guidance on how to work with Kaiser?  Seeing your post, maybe we coudl go to Kaiser in San Jose, then coudl still stay at home.  Thanks for any thoughts. 

Wendy,

My husband has metasticized mucosal melanoma (mets in his bones only). We go to Kaiser in Oakland. His Kaiser oncologist is recommending he go to Riverside for intensive interleukin.  Its not clear which treatment (Interleukin or Ipi) is more effective for his condition (neither is very good, tragically), but he would much rather be at home between ipi treatments than in the hospital for a week out of every month in Riverside for interleukin treatments – so he can work, be with family and friends, etc.  Did you have to make the case to Kaiser, or did they offer Ipi? Any guidance on how to work with Kaiser?  Seeing your post, maybe we coudl go to Kaiser in San Jose, then coudl still stay at home.  Thanks for any thoughts. 

Unfortunately, Lisa passed away. We miss her and may she rest in peace.

Unfortunately, Lisa passed away. We miss her and may she rest in peace.

Unfortunately, Lisa passed away. We miss her and may she rest in peace.

Eric completed his third Yervoy treatment May 3rd, 2013. He felt sick from this one. A little fluish…..and felt sharp pains in his legs. His neuropathy is very painful. Also, his legs were very stiff that night and the next morning. He is feeling better with regards to the stiffness but the pain is still there. He is a lot more tired from this third round. 

His next treatment will be his 4th then will come the scan. Praying that it goes well. 

Eric completed his third Yervoy treatment May 3rd, 2013. He felt sick from this one. A little fluish…..and felt sharp pains in his legs. His neuropathy is very painful. Also, his legs were very stiff that night and the next morning. He is feeling better with regards to the stiffness but the pain is still there. He is a lot more tired from this third round. 

His next treatment will be his 4th then will come the scan. Praying that it goes well. 

Eric completed his third Yervoy treatment May 3rd, 2013. He felt sick from this one. A little fluish…..and felt sharp pains in his legs. His neuropathy is very painful. Also, his legs were very stiff that night and the next morning. He is feeling better with regards to the stiffness but the pain is still there. He is a lot more tired from this third round. 

His next treatment will be his 4th then will come the scan. Praying that it goes well.