Unfortunately my husband's cousin who lives in Henderson, Nevada had a toe amputated about a year ago. We didn't know about this until recently when we visited and his wife gave us the whole story. She also shared the picture with me before he had it looked at, of what it looked like before he sought treatment. Needless to say, when I saw it, I became was immediately beyond concerned. One of the worst I've seen and we know that melanomas on the toe and extremity can sometimes correlate to poor outcomes. The whole toe was bloody, disfigured and unrecognizable. Kelly, the patient, is a hard worker and most likely didn't want to get it looked at or worry the family. I'm not sure why, but it was another 9 months before treatment was discussed. I believe he is being seen at Kaiser in Las Vegas, but we keep trying to get him to come to Houston and MD Anderson. When we were there in August, they were just going in for the PET Scan results. As suspected, they found it had spread to his left groin and his adrenal gland which isn't great (PET scan showed mass with SUV 12.9). We recommended that he needed systemic treatment immediately and they discuss that with doctor ASAP and explained they need to see a specialist, not general oncologist. The general oncologist did start him on immunotherapy, I'm not sure exactly what but I suspect IPI/NIVO. i'm not sure how many treatments he has had, his wife is overwhelmed as they have found more spots and Kelly just got laid off and they have 3 daughters in college. they work hard but have minimal insurance coverage . They texted us and said they stopped his immunotherapy due to thyroid issue but I'm assuming the IPI (maybe the NIVO) has crushed his thyroid . I don't have much more information and we are trying not to overwhelm them with medical questions. My question is: What is the protocol now? Will they try to get the thyroid under control with synthroid and start therapy again if bloodwork shows improvement. How long does this normally take (6 weeks?). I'm so concerned since his original presentation was not good, the wait for therapy, and the aggressive nature of his spread. I will find out about BRAF status, we were asking them to ask the doctor this when we saw him in August, but I'm not sure. I will start researching this but I know this topic has been discussed on the board and wanted to get some immediate advice. I will also search through posts. He is young, in his early 50s and doesn't reach out much, so I think we need to make sure we advocate for him if him and wife will let us. They are two of the nicest people we have had the privilige of know and they don't like to burden people. Just devastated this is happening to them.
Thinking of Mike today as well and hoping had a good appointment with Hamid. We mentioned him to John's cousin as well since that is a short flight.
Many hugs to all of you and thanks for any guidance. I'm on a plane now but going to start looking into this.