Melanoma Caregivers

New member — husband stage IV melanoma

Hi All - my 40 yr old husband, who had a melanoma removed from his chest a few years prior and had since checked out clean, was very suddenly diagnosed with metastic melanoma this past May. Ongoing flu-like symptoms and suspected vertigo led me to take him to the ER, where we learned he had a baseball sized brain tumor. After an extensive emergency surgery, the tumor was determined to be melanoma and subsequent scans revealed it was throughout his body. New brain growths removes him from clinical trial eligibility. This kicked off a summer of battle - including an emergency intestinal surgery, brain and spinal radiation, immunotherapy (Yervoy and opdivo combo), and braf genetic therapy drugs. Side effects have been ever present sometimes requiring hospitalization, mostly use of prednisone, which negates the efficacy of the immunotherapy treatment. He has his 2nd pet scan today (1st scan since the original in May) so will see what status is. So far plan is to continue Opdivo and re-start braf if needed.

This has certainly been an upending experience for our family with two young children and most family out of state. We’re working to prepare for the unknowns of the future, remain as optimistic as can be, and to find our family’s “new normal”.

We’re in the Chicago suburbs and are interested to learn real stories of those who have been impacted similarly, and find a place with others navigating the uncertain and disruptive path melanoma brings.

Thanks much,

Jennifer

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Jennifer.

Welcome to HealthUnlocked. It sounds like your family has hit the ground hard and running since May in a way you didn't expect. There are a number of stories here from caregivers of spouses, parents and children supporting loved ones. It sounds like from your post that you have a melanoma specialty team working with you all and that's essential.

Our children are all young adults, so the impact on them is likely different from young children. Although my husband has been staged at 4 this year he is able to work fulltime and has had really minimal side effects so far. I would guess that our common space is our love, anxiety in the face of what is not fully knowable, reaching for research and community support. We have found the Melanoma Research Foundation to be a good source for research and advocacy. I'm glad you are exploring this space.

Missy

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Hello and I am very sorry to hear about your husband's diagnosis. It sounds like you are on the right path. I was also diagnosed with Stage IV melanoma and went through similar treatments with Yervoy and PD-1 which is now called Keytruda. Please watch the below link called Shelby's Story. She was diagnosed with metastatic Melanoma with over a 1000 spots in her body / organs including it in her brain right before she was to give birth. She was treated by my oncologist, Dr. Steven O'Day from the John Wayne Cancer Institute in Santa Monica, CA, with the same types of immunology drugs. She is currently NED. I wish you and your husband all the best and will keep the both of you in my prayers.

vimeo.com/215677971

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Thanks for the share of Shelby's story on vimeo.

Missy

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While I wish the best for you and your husband, as I am sure you well know, melanoma is very hard to treat. My son, age 28, did not make it. He died in 2014, but he did not have access to the new immunotherapies that are available today. If I could redo one thing differently, I would ask for a referral to palliative care. Many people think this is a different form of hospice, but that is not true. Palliative care helps manage the pain and symptoms for those who are battling a life threatening disease. They help those in hospice AND those still receiveding curative treatment. You can find a palliative care consult team at most hospitals that have a cancer treatment center. After my son passed away and I found out about palliative care and what they do I was so sorry we didn't pursue that for him. Everything would have been so much easier.

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Palliative care is a tremedous resource. Thanks for reminding us of this Crycleo.

Missy

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I'm sorry that you're having to go through all of this. November 29, 2016, my son's battle ended, he was only 24. Taflinar and mekinist worked for 10 months but melanoma is sneaky. It traveled outside the bloodstream and ended up in the men's surrounding his brain. He had tumors in his brain as well that we're inoperable. Opdivo and yervoy we're not effective by the time all this happened. I have heard of some success rates though and I pray that your husband is one of those. Prayers for you and your family.

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Dear Vflowers,

I’m so sorry about the loss of your son. Your tragic story sounds hauntingly familiar. I had 2 sons diagnosed with melanoma within 2 weeks of each other. They were born 15 months apart and died 15 months apart, both when they were 24. At least they went through it together.

We did not know the signs of melanoma nor how deadly it can be if not found early. Early detection means life.

We’ve discovered that they carried a mutation in the cdkn2a gene which is responsible for FAMMM (familia atypical multiple mole melanoma syndrome).

Prayers to you as well.

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Dear jericsson,

I’m so sorry your husband, your young children and yourself have to endure cancers’ hard journey.

I have been through it twice with my sons. Arthur’s tumor was BRAF positive and he was on 2 targeted therapy drugs, Tanifar and Mekenist. They drastically shrunk many tumors but did not pass the brain barrier, and it had previously metastasized to his brain so the treatment was ineffective there. Then he started Ketruda but the cancer was at this time too advanced. We treated him at University of Chicago Comprehensive Cancer Center. I don’t think you can name Drs. On this forum.

My other son was treated st University Of Wisconsin- Madison. His tumor was NRAS positive. He was in a clinical trial of a Yervoy, Opdivo, and a third drug, but the toxicity was causing liver failure so he had to be pulled from the trial.

I am very familiar with steroids, as both boys (they were 24) took a lot of them.

I live in Rockford, Il and couldn’t find any local support groups that helped me, but this community at MRF was a blessing. I don’t know if I can PM you my phone number- since we are so close if you ever wanted to meet. Especially since family is not near. I can share what worked best for us.

Also, the suggestion about palliative care from Crycleo was very wise. I didn’t get Hospice until the very end, but I didn’t know there was a difference. You can get most palliative care for up to 6 months, then just renew the prescription for it. They are amazing and help so much. Especially since you have small children - that’s handful enough.

Please let me know if I can help.

Blessings💜

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Hi Jennifer,

First, I️ am sorry to hear that your family is now dealing with melanoma. My sister was diagnosed with stage iv melanoma in 2016. Her tumors were throughout her body and brain. Gamma knife has helped with the brain lesions though we had one small one bleed that was troublesome which apparently is common with melanoma. She is currently on trametineb and dabrafenib (spelling may be off) after doing the ipi/Nivo combo. Trametineb and dabrafenib worked really well and reduced her tumors but we now have two new ones that may have mutated. She has tolerated the drugs well and in addition is now taking keytruda and xgeva. Her adrenal gland failed while on the ipi/nivo regime and that would be something to be watchful. It was corrected with steroids

No one wants to live with this new normal and I️ can only imagine how hard it is with young children. I️ am in the north shore suburbs and as others have noted I️ am happy speak.

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Welcome BigSister3 to HealthUnlocked. I️ appreciate your sharing.

Missy

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Thank you all so much for responding, for listening, and for sharing your heartfelt stories. I apologize for not responding sooner. As you unfortunately likely well know, managing melanoma and family can be very fast paced. I’m relieved to so far report that my husband has positively responded to the Ipi/nivo combo and now continues with nivo only. Most all tumors are diminishing and there are no new growths in brain or body which, as you know, is significant. He has a good sized lung tumor that didn’t appear to be responding quite as obediently. Will be doing followup scans soon to see it’s status, and are hopeful to avoid lung surgery for its removal. We are very cautiously optimistic at this point as at least a couple known hurdles remain. With it being such an aggressive and fast paced disease it’s the unknowns that bring us most caution, but we feel blessed to have come to this point in his battle. The holidays, entertaining and family were more stressful for me this year as various out of state family visits and are all in different places of their own processing and response to his health situation. It’s difficult for them to truly understand what the supporting family member/s endure when they’re visiting every so often. They all mean well but it doesn’t always translate in an empathetic or supportive way. The cancer support center in northbrook has been a tremendous supportive resource for us both through all the various limbs that cancer brings.

Thanks so much for listening and my thoughts are also with you.

Jenn

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Dear Jenn

So pleased to hear the positive news you and your husband received. You are in my thoughts

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