@wilsonjm2003
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- November 22, 2013 at 9:50 pm
Thank you to everyone for the very thoughtful responses! I am truly blown away by the generosity and spirit of this group. I will try to respond separately to those who reached out individually, but in the meantime, wanted to be sure to answer some of the questions posed.
The progression to stage IV was a recent development, in the first set of scans following four infusions of high dose ipilimumab. Last dose was in mid-September, and scans were in late September and mid-October. PET/CT shows enlarged nodes in lung and neck (under chin). The most recent surgery excised the node in neck to perform a full tissue biopsy, which was positive. The working assumption is that enlargement in lung is also disease progression.
My wife is BRAF mutated, in the V600e gene. So we understand there are likely a number of options for trials that link vemurafenib with PD-1 or other treatments.
We are under the supervision of a melanoma specializing oncologist at the Moores Cancer Center at UCSD, and also consult with melanoma specialists at UCLA (where they are doing a lot of the fantastic recent work on PD-1). We will be evaluating info from each of them over the next week or two, with the expectation that the UCSD doctor is going to recommend IL-2 and the UCLA doctor will recommend PD-1 (since those are their respective expertises).
We know that there is no "right" answer at this point, but are driven by three main concerns. First, what gives the best chance for cure (my wife is 32, and I don't want to be constrained by a treatment whose best case scenario is increasing survival by a few months when there is a chance for something much more lasting)? Second, are we limiting ourselves by trying one treatment over another initially (e.g., I understand IL-2 is the recommended treatment for otherwise healthy patients; what happens if we do PD-1 and her health deteriorates for any reason?)? And third, what is going to be physically tolerable (e.g., even though the treatment regimen sounds daunting, are people able to recover relatively quickly from IL-2 as a general matter)?
Your responses so far have been very helpful in addressing many of these questions. So, thank you. Sincerely.
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- November 22, 2013 at 9:50 pm
Thank you to everyone for the very thoughtful responses! I am truly blown away by the generosity and spirit of this group. I will try to respond separately to those who reached out individually, but in the meantime, wanted to be sure to answer some of the questions posed.
The progression to stage IV was a recent development, in the first set of scans following four infusions of high dose ipilimumab. Last dose was in mid-September, and scans were in late September and mid-October. PET/CT shows enlarged nodes in lung and neck (under chin). The most recent surgery excised the node in neck to perform a full tissue biopsy, which was positive. The working assumption is that enlargement in lung is also disease progression.
My wife is BRAF mutated, in the V600e gene. So we understand there are likely a number of options for trials that link vemurafenib with PD-1 or other treatments.
We are under the supervision of a melanoma specializing oncologist at the Moores Cancer Center at UCSD, and also consult with melanoma specialists at UCLA (where they are doing a lot of the fantastic recent work on PD-1). We will be evaluating info from each of them over the next week or two, with the expectation that the UCSD doctor is going to recommend IL-2 and the UCLA doctor will recommend PD-1 (since those are their respective expertises).
We know that there is no "right" answer at this point, but are driven by three main concerns. First, what gives the best chance for cure (my wife is 32, and I don't want to be constrained by a treatment whose best case scenario is increasing survival by a few months when there is a chance for something much more lasting)? Second, are we limiting ourselves by trying one treatment over another initially (e.g., I understand IL-2 is the recommended treatment for otherwise healthy patients; what happens if we do PD-1 and her health deteriorates for any reason?)? And third, what is going to be physically tolerable (e.g., even though the treatment regimen sounds daunting, are people able to recover relatively quickly from IL-2 as a general matter)?
Your responses so far have been very helpful in addressing many of these questions. So, thank you. Sincerely.
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- November 22, 2013 at 9:50 pm
Thank you to everyone for the very thoughtful responses! I am truly blown away by the generosity and spirit of this group. I will try to respond separately to those who reached out individually, but in the meantime, wanted to be sure to answer some of the questions posed.
The progression to stage IV was a recent development, in the first set of scans following four infusions of high dose ipilimumab. Last dose was in mid-September, and scans were in late September and mid-October. PET/CT shows enlarged nodes in lung and neck (under chin). The most recent surgery excised the node in neck to perform a full tissue biopsy, which was positive. The working assumption is that enlargement in lung is also disease progression.
My wife is BRAF mutated, in the V600e gene. So we understand there are likely a number of options for trials that link vemurafenib with PD-1 or other treatments.
We are under the supervision of a melanoma specializing oncologist at the Moores Cancer Center at UCSD, and also consult with melanoma specialists at UCLA (where they are doing a lot of the fantastic recent work on PD-1). We will be evaluating info from each of them over the next week or two, with the expectation that the UCSD doctor is going to recommend IL-2 and the UCLA doctor will recommend PD-1 (since those are their respective expertises).
We know that there is no "right" answer at this point, but are driven by three main concerns. First, what gives the best chance for cure (my wife is 32, and I don't want to be constrained by a treatment whose best case scenario is increasing survival by a few months when there is a chance for something much more lasting)? Second, are we limiting ourselves by trying one treatment over another initially (e.g., I understand IL-2 is the recommended treatment for otherwise healthy patients; what happens if we do PD-1 and her health deteriorates for any reason?)? And third, what is going to be physically tolerable (e.g., even though the treatment regimen sounds daunting, are people able to recover relatively quickly from IL-2 as a general matter)?
Your responses so far have been very helpful in addressing many of these questions. So, thank you. Sincerely.
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- November 21, 2013 at 4:18 am
Steve:
I can't tell you how painful this is to read. My wife was also diagnosed with melanoma just this year (less than 30 months after we were married), and at each step we have received the news of progression that we did not want to hear. Most recently, we learned that the cancer had metastasized to the other side of her neck from where it originally was detected, and to her chest (lung). I am trying to cope with this reality, and it is oftentimes very difficult because I cannot escape the dread of what may happen down the road. The love you expressed for your wife, ironically enough, helps give me strength to be there for her as we continue to fight our battle. I hope you can take the slightest bit of solace in knowing that Heather continues to help others, even after she has gone. I wish you the best in dealing with your loss, and I offer you all the sympathy and condolences I have.
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- November 21, 2013 at 4:18 am
Steve:
I can't tell you how painful this is to read. My wife was also diagnosed with melanoma just this year (less than 30 months after we were married), and at each step we have received the news of progression that we did not want to hear. Most recently, we learned that the cancer had metastasized to the other side of her neck from where it originally was detected, and to her chest (lung). I am trying to cope with this reality, and it is oftentimes very difficult because I cannot escape the dread of what may happen down the road. The love you expressed for your wife, ironically enough, helps give me strength to be there for her as we continue to fight our battle. I hope you can take the slightest bit of solace in knowing that Heather continues to help others, even after she has gone. I wish you the best in dealing with your loss, and I offer you all the sympathy and condolences I have.
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- November 21, 2013 at 4:18 am
Steve:
I can't tell you how painful this is to read. My wife was also diagnosed with melanoma just this year (less than 30 months after we were married), and at each step we have received the news of progression that we did not want to hear. Most recently, we learned that the cancer had metastasized to the other side of her neck from where it originally was detected, and to her chest (lung). I am trying to cope with this reality, and it is oftentimes very difficult because I cannot escape the dread of what may happen down the road. The love you expressed for your wife, ironically enough, helps give me strength to be there for her as we continue to fight our battle. I hope you can take the slightest bit of solace in knowing that Heather continues to help others, even after she has gone. I wish you the best in dealing with your loss, and I offer you all the sympathy and condolences I have.
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