DonnaK

My husband met w Drs at fox chase and UPenn, and ultimately ended up w a dr at Sloan Kettering.  Unfortunately, we ended up w a dr other than dr Schucter at Penn and  I was very unimpressed w him.  It's very hard to switch docs once you get started at a hospital, so definitely insist on dr.  Schucter.  We did love Tony Olzhanski at fox chase, but they don't have the same experience as Penn or Sloan Kettering.

My husband met w Drs at fox chase and UPenn, and ultimately ended up w a dr at Sloan Kettering.  Unfortunately, we ended up w a dr other than dr Schucter at Penn and  I was very unimpressed w him.  It's very hard to switch docs once you get started at a hospital, so definitely insist on dr.  Schucter.  We did love Tony Olzhanski at fox chase, but they don't have the same experience as Penn or Sloan Kettering.

My husband met w Drs at fox chase and UPenn, and ultimately ended up w a dr at Sloan Kettering.  Unfortunately, we ended up w a dr other than dr Schucter at Penn and  I was very unimpressed w him.  It's very hard to switch docs once you get started at a hospital, so definitely insist on dr.  Schucter.  We did love Tony Olzhanski at fox chase, but they don't have the same experience as Penn or Sloan Kettering.

Anon,

I am so sorry for your loss. I was in your shoes almost 2yrs ago.  I have two young kids that I am raising on my own since my husbands death.  (They were too young for Camp Erin at the time, but I'm still thinking of sending them.)  I think there is no way to predict what will happen with Melanoma, and as much as you wish you had researched other options, the option you chose was probably a very good one. I did research options extensively, and still can't help but wonder if I did enough. (It's a natural response.  I know I did everything I could, but I think this is part of the grieving process.)  

Like you, I never spoke to my husband about his pending death.  It was also 8mos from the time of (stage IV) diagnosis to death.  I worried that the conversation would be a sign of giving up, and I wanted to believe there was always a chance.  I believe his oncologist felt the same way, though she did tell me privately that his time was limited.  With time, I have come to peace with this decision and generally feel I handled things as he would have wanted.  

I'm sure there are many worthy organizations out there. I have chosen to fundraise for the Melanoma International Foundation. This is partly because it is local (Philadelphia suburbs) and also because they do a great job educating patients/caregivers about treatment options.  My career is focused on developing cancer therapeutics, so I felt fairly well versed on the subject, but I often wondered how people with different backgrounds could navigate the process.  MIF has been a great organization for doing just that.

Best,

Donna

Anon,

I am so sorry for your loss. I was in your shoes almost 2yrs ago.  I have two young kids that I am raising on my own since my husbands death.  (They were too young for Camp Erin at the time, but I'm still thinking of sending them.)  I think there is no way to predict what will happen with Melanoma, and as much as you wish you had researched other options, the option you chose was probably a very good one. I did research options extensively, and still can't help but wonder if I did enough. (It's a natural response.  I know I did everything I could, but I think this is part of the grieving process.)  

Like you, I never spoke to my husband about his pending death.  It was also 8mos from the time of (stage IV) diagnosis to death.  I worried that the conversation would be a sign of giving up, and I wanted to believe there was always a chance.  I believe his oncologist felt the same way, though she did tell me privately that his time was limited.  With time, I have come to peace with this decision and generally feel I handled things as he would have wanted.  

I'm sure there are many worthy organizations out there. I have chosen to fundraise for the Melanoma International Foundation. This is partly because it is local (Philadelphia suburbs) and also because they do a great job educating patients/caregivers about treatment options.  My career is focused on developing cancer therapeutics, so I felt fairly well versed on the subject, but I often wondered how people with different backgrounds could navigate the process.  MIF has been a great organization for doing just that.

Best,

Donna

Anon,

I am so sorry for your loss. I was in your shoes almost 2yrs ago.  I have two young kids that I am raising on my own since my husbands death.  (They were too young for Camp Erin at the time, but I'm still thinking of sending them.)  I think there is no way to predict what will happen with Melanoma, and as much as you wish you had researched other options, the option you chose was probably a very good one. I did research options extensively, and still can't help but wonder if I did enough. (It's a natural response.  I know I did everything I could, but I think this is part of the grieving process.)  

Like you, I never spoke to my husband about his pending death.  It was also 8mos from the time of (stage IV) diagnosis to death.  I worried that the conversation would be a sign of giving up, and I wanted to believe there was always a chance.  I believe his oncologist felt the same way, though she did tell me privately that his time was limited.  With time, I have come to peace with this decision and generally feel I handled things as he would have wanted.  

I'm sure there are many worthy organizations out there. I have chosen to fundraise for the Melanoma International Foundation. This is partly because it is local (Philadelphia suburbs) and also because they do a great job educating patients/caregivers about treatment options.  My career is focused on developing cancer therapeutics, so I felt fairly well versed on the subject, but I often wondered how people with different backgrounds could navigate the process.  MIF has been a great organization for doing just that.

Best,

Donna

Brian, I think you've already gotten some great advice on this topic, but I'll offer another perspective. I was a caregiver to my husband, who has since passed away. So, I can only relate to the mental toll that Melanoma took on me and my family.  I work in a high stress environment and was also the primary breadwinner in my family so I had to consider keeping my career on track. I'm not sure that my situation would be feasible for everyone, but my boss(es) agreed to let me dictate my own schedule. Work was a welcome distraction for me, but also everyone knew where my mind was typically and had absolutely no expectations from me.  My colleagues did an incredible job picking up the pieces for  me when I wasn't able.  However, being here kept me up to date on various projects and i was still able to contribute mildly, albeit nowhere near to the extent that I did previously.  Eventually my colleagues kicked me out of work and encouraged me to spend time with my family.  I learned life can change in an instant and will forever value that time I was able to spend at home with my husband.  

Best,

Donna

Brian, I think you've already gotten some great advice on this topic, but I'll offer another perspective. I was a caregiver to my husband, who has since passed away. So, I can only relate to the mental toll that Melanoma took on me and my family.  I work in a high stress environment and was also the primary breadwinner in my family so I had to consider keeping my career on track. I'm not sure that my situation would be feasible for everyone, but my boss(es) agreed to let me dictate my own schedule. Work was a welcome distraction for me, but also everyone knew where my mind was typically and had absolutely no expectations from me.  My colleagues did an incredible job picking up the pieces for  me when I wasn't able.  However, being here kept me up to date on various projects and i was still able to contribute mildly, albeit nowhere near to the extent that I did previously.  Eventually my colleagues kicked me out of work and encouraged me to spend time with my family.  I learned life can change in an instant and will forever value that time I was able to spend at home with my husband.  

Best,

Donna

Brian, I think you've already gotten some great advice on this topic, but I'll offer another perspective. I was a caregiver to my husband, who has since passed away. So, I can only relate to the mental toll that Melanoma took on me and my family.  I work in a high stress environment and was also the primary breadwinner in my family so I had to consider keeping my career on track. I'm not sure that my situation would be feasible for everyone, but my boss(es) agreed to let me dictate my own schedule. Work was a welcome distraction for me, but also everyone knew where my mind was typically and had absolutely no expectations from me.  My colleagues did an incredible job picking up the pieces for  me when I wasn't able.  However, being here kept me up to date on various projects and i was still able to contribute mildly, albeit nowhere near to the extent that I did previously.  Eventually my colleagues kicked me out of work and encouraged me to spend time with my family.  I learned life can change in an instant and will forever value that time I was able to spend at home with my husband.  

Best,

Donna

Hi Jenny, I just wanted to offer a different perspective.  Other than Interferon, there aren't any clinically approved treatments for Stage 3, so you would need to find a clinical trial or a doctor willing to prescribe off label.  I think it's very difficult to find a doctor to prescribe off label, but I'm fairly certain it's impossible at Sloan. My husband was treated there (not by Dr. Postow, but we did meet him) and his doc was pretty clear that she was held to prescribe standard of care only.  Eventually she recommended that we see his local oncologist instead who might have more freedom to prescribe off-label (he did, but that was stage iv).  

You might also search clinicaltrials.gov for "adjuvant melanoma" to see what other trials are currently open.  I don't know if it's still recruiting, but there was a Phase 1 trial combining vaccines w/ Nivolumab or Ipi which might be worth exploring (Moffitt).  Also, there used to be an interferon vs. ipi trial that may still be recruiting. You can always drop out if you are offered interferon.  

Best of luck and so sorry..

Donna

Hi Jenny, I just wanted to offer a different perspective.  Other than Interferon, there aren't any clinically approved treatments for Stage 3, so you would need to find a clinical trial or a doctor willing to prescribe off label.  I think it's very difficult to find a doctor to prescribe off label, but I'm fairly certain it's impossible at Sloan. My husband was treated there (not by Dr. Postow, but we did meet him) and his doc was pretty clear that she was held to prescribe standard of care only.  Eventually she recommended that we see his local oncologist instead who might have more freedom to prescribe off-label (he did, but that was stage iv).  

You might also search clinicaltrials.gov for "adjuvant melanoma" to see what other trials are currently open.  I don't know if it's still recruiting, but there was a Phase 1 trial combining vaccines w/ Nivolumab or Ipi which might be worth exploring (Moffitt).  Also, there used to be an interferon vs. ipi trial that may still be recruiting. You can always drop out if you are offered interferon.  

Best of luck and so sorry..

Donna

Hi Jenny, I just wanted to offer a different perspective.  Other than Interferon, there aren't any clinically approved treatments for Stage 3, so you would need to find a clinical trial or a doctor willing to prescribe off label.  I think it's very difficult to find a doctor to prescribe off label, but I'm fairly certain it's impossible at Sloan. My husband was treated there (not by Dr. Postow, but we did meet him) and his doc was pretty clear that she was held to prescribe standard of care only.  Eventually she recommended that we see his local oncologist instead who might have more freedom to prescribe off-label (he did, but that was stage iv).  

You might also search clinicaltrials.gov for "adjuvant melanoma" to see what other trials are currently open.  I don't know if it's still recruiting, but there was a Phase 1 trial combining vaccines w/ Nivolumab or Ipi which might be worth exploring (Moffitt).  Also, there used to be an interferon vs. ipi trial that may still be recruiting. You can always drop out if you are offered interferon.  

Best of luck and so sorry..

Donna

Eva, I rarely post here any longer but check here frequently to see how people are doing.  I can't tell you how happy I am to read this news! After hte long road you've been through, it's about time you caught a break.  Your positive attitiude continues to amaze me.  

Hope you get to celebrate tonight.

Best,

Donna

Eva, I rarely post here any longer but check here frequently to see how people are doing.  I can't tell you how happy I am to read this news! After hte long road you've been through, it's about time you caught a break.  Your positive attitiude continues to amaze me.  

Hope you get to celebrate tonight.

Best,

Donna

Eva, I rarely post here any longer but check here frequently to see how people are doing.  I can't tell you how happy I am to read this news! After hte long road you've been through, it's about time you caught a break.  Your positive attitiude continues to amaze me.  

Hope you get to celebrate tonight.

Best,

Donna