Home Forums Melanoma Diagnosis: Stage IV newly diagnosed

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  • #22237
    gaylacagle
    Participant

    Hi. I am gayla. My husband just got diagnosed with stage iv metastatic melanoma this week. His primary lesion was on his scalp in 2006, stage 1. For the past few months, weve undergone test after test for upper gastric pains which we thought were gallbladder related. Turns out its a tumor in his stomach being malignant melanoma. We are crazy with where to go and what to do. We have an 11 yrold and 16yrold. Cant lose him just yet. We have an appt with Vanderbilt on thr 14th. Are they good? Of course weve seen one oncologist and have a second opinion on Tuesday. We have a PET scan scheduled tomorrow. This seemed like a helpful site for information.

    #65803
    tamie
    Participant

    Sorry you had to join us here, but I can tell yo uthat this forum has become one of my masin support system. After overcoming the big shock of learning your husband suffers fro mmelanoma – yo ulearn that there is a lot to do, there are new treatments and there are always options.

    What helped me cope was to make sure we are treates i nthe best available place, where I competely trust my husband oncolocgists. However – I read a lot, consulted with this forum and always check what is the first treatment and what the net. Yo ufeel better once you know that you can lead the treatment and make decisions, know what to expect and look every time at the present option but also prepare for the enxt.

    I also have a 16 years old son 9as well as older and grandchildren), and we tend to have Michael with us for many more years. So – be strong, yo uhave a long way to go, sometines yo ufeel as if you are at war – fighting the birocracy and fighting for your husband life but yo ucan do it and it worth it

    Tammie

    #65804
    Catherine Poole
    Keymaster

    Gayla,

    Welcome! We are here to support you every step of the way. First, take fifteen minutes to view this video of 6 stage IV patients, it will give you some reassurance: http://melanomainternational.org/events-webinar/patient-experience-video

    Vanderbilt is a fine place for an opinion but also in Nashville is Sarah Cannon Research Institute where they are on the cutting edge of new therapies.

    Let us know what is suggested at Vanderbilt and we can weigh in with suggestions. Your husband is lucky to have you looking out for him.

    #65805

    Hi Gayla…I am in a very similar situation as yourself..my husband was diagnosed with a melanoma on his foot in May, 2013 and a year and a half later, we are in a trial with 2 meds which he is tolerating very well. We also have teenagers…3 of them, 16, 14 and 13. I think the idea of dealing with the “teen” years (!) alone drives me to advocacy and information on this terrible disease and how I can be a support to my husband. Hands down..#1 you need to make sure you are with a top melanoma Dr/center, educate yourself as much as you can possibly muster on melanoma and the incredible treatments that are out there now and ask as many questions of your Drs as you can…and then ask again even if they give you the “here she goes again” look…make sure to take time for you which is really hard to do sometimes but absolutely crucial for your physical and mental state and rely on anyone who is willing to be helpful (I was lucky enough to have a couple of medical family members..nurses, pharm rep…who were willing to do some research too)..I didn’t want the help initially (stubborn) but I realized that was shortsighted and I couldn’t do all of this alone..I am SO comforted that he didn’t get his melanoma years ago when there were no or few options..I log onto this site at least a few times a week and it is also very helpful…Good luck to you and keep in touch.

    #65806
    gaylacagle
    Participant

    We are trying to decide tween collaboration w md Anderson or UF health and our oncologist. Its in o

    Orlando. Any advice?

    #65807
    Catherine Poole
    Keymaster

    That area has very melanoma centers of excellence but here are a few: Moffitt in Tampa, Nashville has two: Sarah Cannon Research Center, and Vanderbilt, which I thought you were getting an opinion there? These three are doing current melanoma research.

    #65808
    saderdomer
    Participant

    I am getting the Merck anti-PD1 (mk3475 – Keytruda) at the Mayo Clinic in Jacksonville FL. They conducted some of the clinical studies on this drug and seem to have an active research program. Of course, they are tied in with the Mayo Clinic in Rochester MN. These days I work with both.

    #65809
    Catherine Poole
    Keymaster

    I’m sorry I forgot the Jacksonville MAYO, I work with them a lot. Dr. Joseph is great there!

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