Melanoma Caregivers

New to the group

New to the group

My son was diagnosed with stage 4 melanoma at the age of 22 in 2015. He had a big lump on the back of his head. He had surgery and after got a full body scan and mri. They found 2 other small tumors and he went through immunotherapy. This was working well to shrink the tumors until a month ago. A bigger tumor was located on his back and it was removed and biopsied. Came back positive. Next step is a pet scan this week and maybe targeted therapy. He has the mutated Braf gene. Anyone have experience with this type of treatment? The strange thing is that he has never had any symptoms or pain since diagnosis. He has continued his University education graduating with honors and it now doing his maters. He is strong....me not so much. The photo is of him after first surgery

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Immunotherapy works differently on everyone. What kind of targeted therapy are you referring to?

Ask your son how much he wants to know about his treatment options and prognosis, and then make an appointment with your doctor to have this conversation if you have not already done so. How your son wants to deal with his illness should be up to him, not the doctor. If he wants to be totally involved in treatment, make sure you communicate that to your doctor and then make sure he follows through with your son's wishes. Wishing you the best results possible.

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He sees the oncologist after his pet scan this coming Thursday. They have discussed targeted therapy “BRAF inhibitors” in the past. Was just wondering if anyone here had this treatment and if it was effective

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And he’s 24 and makes his own decisions

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Again there are many different types and they react differently in each person. What works for one may not work for another. My son, age 28, had BRAF Wild Type. He had immunotherapy, but it didn't work for him , and at the time, there was nothing else to offer. On the other hand, immunotherapy works wonders for other people. It all depends on things beyond our control like tumor type, tumor burden, lymphocytes in the tumor etc.

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Thank you.

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I read other posts and just want to say how sorry I am for the passing of your son. I can’t even imagine the kind of pain you’re going through. I live in fear every day. Sending you much love.

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Karen,

BRAF targeted therapies are often stop gap therapies that may produce some short term results for most folks. Asking the doctor to describe what is expected with this approach for your son given his current treatment responses, tumor burden, and gene typing is a good question.

It is also worth a discussion to ask what other therapies are available (combinations? or clinical trials?) and if he participates in the BRAF treatment, does this take him out of eligibility for other treatments. What are the benefits and side effects?

Your son may also want to inquire about an approach called Palliative Care. This is different from Hospice care. Palliative Care permits ongoing active treatment, but aligns all caregivers and interventions with the patient goal as he expresses it. Hospice care is when active treatment is stopped, and comfort care is the goal. It is also usually brought in when there is a shortened life expectation of about 6 months, but can be renewed.

I'm sorry that you are on this journey and that melanoma is being very aggressive right now in your son. We remain here for you as a caregiver all the way.

Missy

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Thanks for the information. Will know more on the next steps tomorrow after his appt with the oncologist.

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Just received some great news from today’s appt. The cat scan and pet scans show no progression of the disease. The Dr is confident that the immunotherapy is still working. They will remove the small lump on his leg.

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Karen what s blessing for today. Soak it in

We have a melanoma support group we attend for patients and caregivers in AlexandriaVa. One of our members , who is a caregiver and lung cancer survivor says the way to live with cancer is to keep on living another day. I kind of like that ad a hopeful approach.

Missy

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Hi Karen, my son was diagnosed with melanoma when he was 20, a sophomore in college. He had no other activity in lymph nodes so he went about his life and graduated from college in 2014. 6 months after graduation, his melanoma returned in his lymph nodes and had traveled rapidly to other internal organs. He was BRAF positive. He endured 10 months on taflinar and mekinist. His melanoma then spread and he did 3 treatments of opdivo and yervoy along with 20 rounds of whole brain radiation. His battle ended November 29 of 2016 at the age of 24.

I'm not telling you this to scare you. Your son is an adult as was mine. We went together to every appointment, ask the tough questions. I know a lot of people his age and older who responded very well to his same treatment. It all depends on how well ones body responds to the immunotherapy. I'll keep your family in my thoughts and prayers.

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I’m so sorry for your loss. Thank you for sharing your story. We go to every appt we can with him and we do ask a lot of questions. He’s leaving today for Montreal to continue his studies. He has 2 great teams of Drs in our city and in Montreal.

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Living. Living with cancer is key. I’m glad your son can travel and study.

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My son Arthur also endured targeted therapy- 2 BRAF inhibitors- tanifar and mekenist. He lost 30lbs in a month. He was very sick. When scan time came we were so happy because it significantly reduced the size of tumors, and even eliminated some of the smaller ones! But it was short lived because He also had had 3 small spots in his brain prior to treatment, and in one month they went from 3 to over 40. The therapy did not pass the brain barrier. He died from secondary brain cancer 2 months later.

Ask the doctor about the brain barrier. I didn’t know there was such a thing. Getting that news was very hard on my son. He started more WBR and Ketruda, but at that point he was too far gone. What a helpless feeling! Arthur was diagnosed 3B in 2013 and had a two year battle.

Your sweet brave son! Your post touched me deeply. I can’t believe how many young men get this. With my boys it was hereditary. Wishing your son the very best. New treatments all the time- there is much hope! Stay strong and present, dear mama💜

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