fucancer44

Thank you so much! I agree wholeheartedly. I will let you know how it goes! 

Thank you so much! I agree wholeheartedly. I will let you know how it goes! 

Thank you so much! I agree wholeheartedly. I will let you know how it goes! 

So I forgot to mention that after his first surgery in late January, Justin had wound complications from his lymph node removal and had to have surgery again to debride and take out the infection. Then he was required to wear a wound vac for months and they wouldn't start treatment until he was completely healed because the treatment makes him even more immunosuppressed and they didn't want to increase his chances to develop yet another infection. Hence, the delayed treatment after diagnosis. Very crappy situation. 

Our oncologist sent his scans to a radiologist who specializes in oncology images and he determined that at this time radiation was not needed. No one had given us a good reason as to why he shouldn't have radiation other than the fact that his tumors are relatively small (but shouldn't we shrink them now as opposed to when they get bigger??). And they have told us overall that radiation is not super successful in melanoma patients. Again, the reason why we need someone else reliable to go to for a second opinion. We need a Melanoma guru, so to speak, and we are having trouble finding one. 

No matter what he will go on the Yervoy. But they haven't started that yet because they are still trying to find him a clinical trial he actually qualifies for (if that exists) because if they start giving the Yervoy now, that could take him out of the running even more for a possible clinical trial. It's a horrible horrible catch 22. 

That's why I came here. We need a recommendation of someone to go to so we can get better answers and a treatment plan. 

Thank you both for your replies! We are open to any more suggestions.

So I forgot to mention that after his first surgery in late January, Justin had wound complications from his lymph node removal and had to have surgery again to debride and take out the infection. Then he was required to wear a wound vac for months and they wouldn't start treatment until he was completely healed because the treatment makes him even more immunosuppressed and they didn't want to increase his chances to develop yet another infection. Hence, the delayed treatment after diagnosis. Very crappy situation. 

Our oncologist sent his scans to a radiologist who specializes in oncology images and he determined that at this time radiation was not needed. No one had given us a good reason as to why he shouldn't have radiation other than the fact that his tumors are relatively small (but shouldn't we shrink them now as opposed to when they get bigger??). And they have told us overall that radiation is not super successful in melanoma patients. Again, the reason why we need someone else reliable to go to for a second opinion. We need a Melanoma guru, so to speak, and we are having trouble finding one. 

No matter what he will go on the Yervoy. But they haven't started that yet because they are still trying to find him a clinical trial he actually qualifies for (if that exists) because if they start giving the Yervoy now, that could take him out of the running even more for a possible clinical trial. It's a horrible horrible catch 22. 

That's why I came here. We need a recommendation of someone to go to so we can get better answers and a treatment plan. 

Thank you both for your replies! We are open to any more suggestions.

So I forgot to mention that after his first surgery in late January, Justin had wound complications from his lymph node removal and had to have surgery again to debride and take out the infection. Then he was required to wear a wound vac for months and they wouldn't start treatment until he was completely healed because the treatment makes him even more immunosuppressed and they didn't want to increase his chances to develop yet another infection. Hence, the delayed treatment after diagnosis. Very crappy situation. 

Our oncologist sent his scans to a radiologist who specializes in oncology images and he determined that at this time radiation was not needed. No one had given us a good reason as to why he shouldn't have radiation other than the fact that his tumors are relatively small (but shouldn't we shrink them now as opposed to when they get bigger??). And they have told us overall that radiation is not super successful in melanoma patients. Again, the reason why we need someone else reliable to go to for a second opinion. We need a Melanoma guru, so to speak, and we are having trouble finding one. 

No matter what he will go on the Yervoy. But they haven't started that yet because they are still trying to find him a clinical trial he actually qualifies for (if that exists) because if they start giving the Yervoy now, that could take him out of the running even more for a possible clinical trial. It's a horrible horrible catch 22. 

That's why I came here. We need a recommendation of someone to go to so we can get better answers and a treatment plan. 

Thank you both for your replies! We are open to any more suggestions.