Mucosal Melanoma

Shelly51
Shelly51 Member Posts: 1 Member
edited January 2023 in Multiple Myeloma #1

My husband was diagnosed with Mucosal in May. Has had 2 treatments and now is going to try another that is only 17 percent affective. We are in our early 50s and have been married for almost 29 years. Chemo won’t work on this illness. I try to have hope but the doctor implied this is mostly a sad ending.

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  • cwhiteMMsurvive
    cwhiteMMsurvive Member Posts: 2 Member
    #2

    Hello, my name is Chris White. I am so sorry y’all are going through this, my heart goes out to you both. I was diagnosed in July 2018 with Anorectal Mucosal Melanoma. I went through several treatments until I found the one that worked for me which was the TIL LN-144 from Iovance. It was a clinical trial which will hopefully get approved soon. I’ve been NED for a little over 2 years now and I’ll be 41 in a couple of months. I completely understand what your husband is going through and bless you as well as I know the toll it takes on the caretaker also. There is always hope and I’m a testament to that. I’m apart of a Facebook Group called Mucosal Melanoma Warriors and we do Zoom calls every Friday night and Saturday mornings. It’s strictly for patients and caregivers but we encourage and support each other as we share our Mucosal Melanoma journeys and share resources. Personally for me it’s therapeutic because I can openly talk with other patients and caregivers who are going through the same thing. I encourage y’all to join if you’re not already apart of it.

    Sending healing vibes, Chris White

  • bkeller
    bkeller Member Posts: 1 *
    #3

    I’m so sorry. I know how agonizing this time can be. My husband was diagnosed in 2016. He was 40 and our son was in kindergarten. My dad died of cutaneous melanoma in 2011, I’m an old hospice nurse, and because of my experience I had no hope. I had resigned myself to being a young widow, but after two failed clinical trials my husband entered a TIL trial at CU Anschutz in Aurora Colorado in 2018. It’s now 2023 and he is still here with no evidence of disease. He snowboards, rafts, and does CrossFit 5 days a week. He’s an amazing man, my best friend, and an incredible father, and it looks like we get to keep him for a long while.

    It’s a brutal disease but you’ve hit science at a good time. There is hope. There is so much to hope for.

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