Stage IIIb and now on Zelboraf

I, too, am puzzled by the use of Zelboraf in this case (and in NYKaren's case, too). Even when Zelboraf works, the tumors tend to become resistant within 6-9 months. However, if your husband has a low tumor burden, why didn't your oncologist recommend an immune-based therapy like Yervoy or an anti-PD-1 trial? When they work, the effect seems to last a long time. 

Just curious.

I, too, am puzzled by the use of Zelboraf in this case (and in NYKaren's case, too). Even when Zelboraf works, the tumors tend to become resistant within 6-9 months. However, if your husband has a low tumor burden, why didn't your oncologist recommend an immune-based therapy like Yervoy or an anti-PD-1 trial? When they work, the effect seems to last a long time. 

Just curious.

hmmm, let me count the reasons after being diagnosed with State IIIC Unresectable Melanoma, which just spreads and spreads and spreads,

1)  of course, Wide, surgical excision & SNB followed by recurrance

prompted switch to Sloan Kettering:

 2) radation, followed by recurrance,

 3)  Yervoy, followed by recurrance

 4) IL2, followed by recurrance,

  5)Yervoy Reinduction, followed by recurrance,

All this winds me up with melanoma in my ear, for which 2 surgeons recommend removing the ear.

It's not like I had a choice. 

hmmm, let me count the reasons after being diagnosed with State IIIC Unresectable Melanoma, which just spreads and spreads and spreads,

1)  of course, Wide, surgical excision & SNB followed by recurrance

prompted switch to Sloan Kettering:

 2) radation, followed by recurrance,

 3)  Yervoy, followed by recurrance

 4) IL2, followed by recurrance,

  5)Yervoy Reinduction, followed by recurrance,

All this winds me up with melanoma in my ear, for which 2 surgeons recommend removing the ear.

It's not like I had a choice. 

Gee, Karen. I'm sorry for all you have been through! You are one tough lady! 

However, I notice that you did have several other treatments, including immune treatments, before you went to Zelboraf. For what it's worth, that makes sense to me. What puzzles me is turning to Zelboraf first– before trying any immune therapies. 

Gee, Karen. I'm sorry for all you have been through! You are one tough lady! 

However, I notice that you did have several other treatments, including immune treatments, before you went to Zelboraf. For what it's worth, that makes sense to me. What puzzles me is turning to Zelboraf first– before trying any immune therapies. 

Gee, Karen. I'm sorry for all you have been through! You are one tough lady! 

However, I notice that you did have several other treatments, including immune treatments, before you went to Zelboraf. For what it's worth, that makes sense to me. What puzzles me is turning to Zelboraf first– before trying any immune therapies. 

Gee, Karen. I'm sorry for all you have been through! You are one tough lady! 

However, I notice that you did have several other treatments, including immune treatments, before you went to Zelboraf. For what it's worth, that makes sense to me. What puzzles me is turning to Zelboraf first– before trying any immune therapies. 

Gee, Karen. I'm sorry for all you have been through! You are one tough lady! 

However, I notice that you did have several other treatments, including immune treatments, before you went to Zelboraf. For what it's worth, that makes sense to me. What puzzles me is turning to Zelboraf first– before trying any immune therapies. 

POW, it's interesting that you say that…when I first got to Sloan I kept asking about my BRAF status…was always told it was negative.  Then I asked to be retrested & it was positive.  My docs believe that the test has become more sensitive, my status did not change! 

Had we known my status then, I know i would have been on the Zel after the first Yervoy treatment failed…most definately would have chosen it over Yervoy reinduction (which ended w/me having colitis).  Ideally, I would have opted for a PD-1 trial during most of this time, that is what I'm aiming for now, fingers crossed that this time it will work out.

While the criteria for Yervoy is "Stage IV or IIIC unresectable, Zel seems to be a little more flexible once someone's disease is metastatic (provided they're BRAF+, of course,) so that might be part of the reason.  I understand and appreciate your question; sometimes I wish I could close my eyes and wake up in two years, when, hopefully all this will be sorted out and many more of us are enjoying long-time NED

Karen

POW, it's interesting that you say that…when I first got to Sloan I kept asking about my BRAF status…was always told it was negative.  Then I asked to be retrested & it was positive.  My docs believe that the test has become more sensitive, my status did not change! 

Had we known my status then, I know i would have been on the Zel after the first Yervoy treatment failed…most definately would have chosen it over Yervoy reinduction (which ended w/me having colitis).  Ideally, I would have opted for a PD-1 trial during most of this time, that is what I'm aiming for now, fingers crossed that this time it will work out.

While the criteria for Yervoy is "Stage IV or IIIC unresectable, Zel seems to be a little more flexible once someone's disease is metastatic (provided they're BRAF+, of course,) so that might be part of the reason.  I understand and appreciate your question; sometimes I wish I could close my eyes and wake up in two years, when, hopefully all this will be sorted out and many more of us are enjoying long-time NED

Karen

POW, it's interesting that you say that…when I first got to Sloan I kept asking about my BRAF status…was always told it was negative.  Then I asked to be retrested & it was positive.  My docs believe that the test has become more sensitive, my status did not change! 

Had we known my status then, I know i would have been on the Zel after the first Yervoy treatment failed…most definately would have chosen it over Yervoy reinduction (which ended w/me having colitis).  Ideally, I would have opted for a PD-1 trial during most of this time, that is what I'm aiming for now, fingers crossed that this time it will work out.

While the criteria for Yervoy is "Stage IV or IIIC unresectable, Zel seems to be a little more flexible once someone's disease is metastatic (provided they're BRAF+, of course,) so that might be part of the reason.  I understand and appreciate your question; sometimes I wish I could close my eyes and wake up in two years, when, hopefully all this will be sorted out and many more of us are enjoying long-time NED

Karen

Gee, Karen. I'm sorry for all you have been through! You are one tough lady! 

However, I notice that you did have several other treatments, including immune treatments, before you went to Zelboraf. For what it's worth, that makes sense to me. What puzzles me is turning to Zelboraf first– before trying any immune therapies. 

hmmm, let me count the reasons after being diagnosed with State IIIC Unresectable Melanoma, which just spreads and spreads and spreads,

1)  of course, Wide, surgical excision & SNB followed by recurrance

prompted switch to Sloan Kettering:

 2) radation, followed by recurrance,

 3)  Yervoy, followed by recurrance

 4) IL2, followed by recurrance,

  5)Yervoy Reinduction, followed by recurrance,

All this winds me up with melanoma in my ear, for which 2 surgeons recommend removing the ear.

It's not like I had a choice. 

I, too, am puzzled by the use of Zelboraf in this case (and in NYKaren's case, too). Even when Zelboraf works, the tumors tend to become resistant within 6-9 months. However, if your husband has a low tumor burden, why didn't your oncologist recommend an immune-based therapy like Yervoy or an anti-PD-1 trial? When they work, the effect seems to last a long time. 

Just curious.

Mark, since their approvals, Yervoy and Zelbarof have been for Stages IIIC unresectable and IV.  I believe that using Zel for other Stage III's is relatively new, but as I said above, there appears to be a bit more wriggle-room in the prescribing criteria.

Best to all!   karen

Mark, since their approvals, Yervoy and Zelbarof have been for Stages IIIC unresectable and IV.  I believe that using Zel for other Stage III's is relatively new, but as I said above, there appears to be a bit more wriggle-room in the prescribing criteria.

Best to all!   karen

Mark, since their approvals, Yervoy and Zelbarof have been for Stages IIIC unresectable and IV.  I believe that using Zel for other Stage III's is relatively new, but as I said above, there appears to be a bit more wriggle-room in the prescribing criteria.

Best to all!   karen