Melanoma Caregivers

Keep Informed

At age 28, my son lost his battle with melanoma. It is imperative that you keep informed and tell you doctor to keep YOU informed of your loved one's medical status and whether or not they are responding to treatment. If you don't ask, they may not tell you. That's what happened to us so ask questions and make sure your doctor knows you want to know what's going on--good or bad.

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I'm so sorry to hear about your son. My son lost his battle at age 24. I had his reports and asked tons of questions. In the end, we all realized, nothing was going to keep him here with us. I advocated on the importance of sun safety now and awareness.

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We too, are involved in promoting awareness for sun safety. Our son was a lifeguard for two summers at college. I wish I knew then what I know now.

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Hi, my son was diagnosed several years ago and it metastasized two years ago. Since he is an adult I am not in control of his treatment , but he does allow us to come to visits. He received immuntheraphy treatment at MSK, with several side effects. I am not comfortable speaking to his doctor in front of him and not sure how to approach the questions I have. He is NED his last visit was 6 months ago and now the doctor is having him come 4 months. He is BRAF positive and I have read a lot of articles and am just worried that something showed in his last blood work to worry them. Should I call the office and ask or wait until his appointment in September. I feel like I am walking on egg shells here all the time.

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I would ask your son if it was okay to ask the doctor questions with or without him there. That way, you could call and at least speak to the doctor's nurse about your concerns. Without his permission though, they won't talk to you at all. Also, is your son unmarried? If so, that would designate you as the default surrogate if he ever found himself in a position where he couldn't make decisions for himself. He can ask for you to be designated for that task in the medical record as well.

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Thank you for your response, I will make it a point to become his surrogate.

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Ilost my 2 oldest sons to melanoma the last 2 years. They were actually diagnosed within weeks of each other and they went through their surgeries and a year of interferon treatments together. Arthur my oldest was staged 3B and 6 months after ending the interferon it had metastasized to his brain and spine and shoulder( primary site). That’s what took him back in- his shoulder was giving him a great deal of pain, and we thought it might be “dead arm” because all his lymph nodes had been removed. ) he was in a targeted therapy for a month ( Tannifar and Mekenist- a brutal combo) that significantly reduced the tumors on his bones, lung liver but did not pass the brain barrier. In a month his brain Mets grew from 3 to over 40. They started him On Ketruda but he died after a few treatments, only 6 months after we found out it had returned.

My other son took all the infusions of interferon but did not finish the daily shots. He had been staged 3A. His returned 21/2 years later. He was in a clinical trial but had to be pulled because the toxicity Was causing liver failure. They both died when they were 24. They had FAMMM a syndrome involving a gene mutation which puts you at an insanely high risk. The general population has only a 1-2% chance of developing melanoma, but with this gene mutation it raises the risk to56-94%!!

I would try and get involved as much as you can. It was hard for me with my one son because he was very private, but I became his caregiver and it was the most blessed thing I have ever done. I only wish I’d pushed harder to get closer and ask him those tough questions about life.

I hope you can find some common ground with him. He may not know what he wants. I send you my love and blessings and prayers💜💜💜💜

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