Home Forums For Caregivers Only New mass in liver, waiting for pt/ct exam.

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  • #21204
    Fguzman
    Participant

    my husband has been battling with mucosal melanoma for 5 years now.

    he has had 2 surgeries, chemo, and IV IL. Now he has a mass in the liver, suspecious for melanoma. I am doing research about clinical trial in our Area. Just wanted to share with someone not family related.

    #60169
    Catherine Poole
    Keymaster

    Welcome to our forum. Have you looked at http://www.clinicaltrials.gov? There are some interesting trials that may benefit your husband. I’m sorry to hear about all you are going through. Please let us know how we can support youi.

    #60170
    frannny
    Participant

    Thank you Catherine, it is a relief to have this forum, and I can comunicate with people that have experience this disease. my husband was diagnosed first time in march 2008 with mucosal melanoma.

    melanoma was in the anal area, surgery was the first line of treatment. sept 2009, melanoma returned to his inguinal area. after this he had chemo, and immunotherapy. now the pet/ct shows melanoma in the leg, tip of pancreas, kidney, lung, lymph nodes near the esophagus and metasis to the liver. We are going back to The Los Angeles clinic in Santa Monica, hopefully he qualifies for IPI. (once insurance approves that).

    Gracias!

    #60171
    Catherine Poole
    Keymaster

    Ask about the clinical trials at the Angeles clinic, also UCLA. You might find something more interesting for therapy..let us know.

    #60172
    frannny
    Participant

    Saw the specialist in melanoma, we receive all the info regarding the clinical trial; to take home, read and consent for clinical trial MK-3475. I hope this will help him. last two days he was having pain, generalized and also by the liver area. it was difficult to see him like. today he feels better. meanwhile the braf mutation is being processed from the tumor removed in 2009.

    best regards,

    franny

    #60173
    Catherine Poole
    Keymaster

    I hope he gets a good response. Do make sure pain is under control for him, because that can wear him out. Don’t forget to take good care of yourself too!!

    #60174
    frannny
    Participant

    Today my husband had MRI for the brain, repeated ct scans, and biopsy of an abominal mass. seems that we are getting closer for him to start the clinical trial.. I wish he could start soon.

    next appt 5/23, looks like he will start the infusion. It is difficult to wait and see him in pain.

    we are almost there, and I am thankful for that.

    thanks,

    franny

    #60175
    Anonymous
    Guest

    I’m praying that your husband gets in and has a great response Franny.

    Watching your spouse suffer is really hard though.

    Rest assured you’re doing a truly great job caring for him.

    Take care of yourself too. Easy to say as it’s also a real difficult job at times but it is very, very true. It’s ok to put your oxygen mask on first. It gives you strength to help him.

    Jeff

    #60176
    frannny
    Participant

    Hi Jeff,

    Good news, my husband will star the trial this Monday! I was reading your. Comments about radiation working for mucosal melanoma. His brak mutation is – the wild type, mucosal melanona.

    The pet scan showed growths 4 cm liver, lung, tip f pancreas, kidney, left leg, and lymph nodes.

    Thanks for your prayers.

    Franny.

    #60177
    Gilly
    Participant

    Just wondering how you are doing Franny – and how your husband is doing on the trial – I hope you are both ok.

    #60178
    Fguzman
    Participant

    Hi Jeff, and Gilly:

    Things have been though here at home. my husband has now brain mets, and is disqualified for MK-3475. Scans shows new lesions liver, lung, lymph nodes, so many more places.

    He is very fatigued, poor appetite, pain. I am sorry for all the patients and family that go through this melanoma cancer. Gamma knife is being schedule, maybe some radiation to the liver for pain control. It seems that he is getting weaker and weaker and very difficult to go through BIO Chemo if it ever happens. I am sad, I wonders if tears have a limit? I wonder why melanoma is so nasty?

    We have 5 children (adults) they have been coming home and it has been a lot of support.

    I am on family leave and that also helps. A hug to all!

    franny

    #60179
    Catherine Poole
    Keymaster

    Oh, no, so sorry to hear this. I hope you weren’t considering biochemo for him. That would be so toxic and has very low results. There may be other therapies to try that are less debilitating. But first get through the brain mets treatment. Our thoughts are with you.

    #60180
    Fguzman
    Participant

    Hi Catherine,

    Gamma knife is schedule for tomorrow July 31.

    We saw Dr. Michael Wong today; He recommends brain first, then liver.

    to try IPI, and there is a clinical trial for patients who livers are debilitated.

    thanks for letting me know about the bio chemo being so toxic.

    frannny.

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