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Newbie here (spouse/caregiver)

Forums Caregiver Community Newbie here (spouse/caregiver)

  • Post
    dmarie
    Participant

      My husband was recently diagnosed with metastic melanoma. Today is 2 weeks since the initial MRI showed "multiple lesions". 8/21 GP visit, followed by MRI and admission to hospital; 8/22 abdomenal, pelvic and chest CTs & MRI; 8/23 brain surgery to remove largest mass. 1cm cancerous mass surrounded by 3x4cm bloody cyst. They knew it was metastic because of scan images done day prior. 8/24 released from hospital; 8/25 neurosurgeon called with news from pathology that it was melanoma. 8/28 1st office visit with radiation oncologist who recommended "whole brain radiation" given that there are 13 lesions remaining, scattered in the brain. Tomorrow we meet with SCCA (Seattle Cancer Care Alliance) melanoma dr for second opinion and more information. 

      What can I expect from this visit? This all seems to have happened so fast. But I wonder if we are not moving fast enough at the same time. 

      He looks great and feels pretty good. He has some digestive issues – meds? tumors in liver? other reasons? His language and cognition were pretty much fully restored after the surgery. He is getting his ducks in a row (getting all financial and insurance information accessible to me, looking at meal plans (paleo mostly), selling his dirt bike and our RV as these are 'clutter' that we don't need at this time). I have been reading forums and getting information, and I think he has avoided learning how insideous this can be/is. (I have been grateful for this period of 'blissful ignorance'). But tomorrow will be our first experience with a Cancer Center, and we don't know what to expect. Any insight would be so appreciated. 

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        cancersnewnormal
        Participant

          A second opinion sounds like a wise move. From what I can see, SCCA works alongside Fred Hutchinson, which is a National Cancer Institute designated comprehensive cancer center (a patient's best option for top notch all around treatment). My husband and I were tossed into the same swirl of "panic" when I went down with a seizure, and this whole stage IV diagnosis began. The idea of whole brain radiation is a bit frightening. Sometimes it is a patient's best course… however, it carries a higher potential for damaging neurological side effects than targeted radiation, and is not as effective with long term control. There have been cases of patients (some right here on this forum!) who have had multiple brain metastasis of higher numbers than 13, that were treated with gamma knife or SRS, to avoid whole brain. I don't intend this to frighten you, but there are hospitals/care centers known to base their practices off of the outdated "standard protocol" of doing WBR for anything more than 4-5 lesions. Gamma knife radiation can be done in one day, and will precisely target individual tumors with a higher dose of radiation. More lesion killing power, and a much faster turn around time to get your hubs moving along to BRAF inhibitors (if he is BRAF pos) or immunotheraputic infusions. Those meds can work in the brain as well… which could prevent future lesions from cropping up. 

          Grill the doctors on exactly WHY they would opt for whole brain or targeted therapy. Ask them what the long term side effects of each are. READ READ READ about them both. His brain is the most important place to tackle first. And just for a touch of reassurance… there are success stories around for stage IV patients with brain mets… some of us still here 4 years out… some even longer still! It is quite a rollercoaster ride, but it sounds like you two are moving forward for the best possible outcome. Try to enjoy that "blissful ignorance" as much as possible. You can only take one bite at a time. You've made it through the brain surgery… try not to think toooooo far ahead and focus on what hurdle to overcome next. 

            dmarie
            Participant

              Thank you! So, so much! I am immune to being scared these days I think. I have read a little about gamma knife and SRS, but not enough. I will do more research today on those. We don't know if genetic testing has been done to know if he is BRAF positive. Do I have to ask for that? Or is it part of the standard operating procedure?

              I used to work at Fred Hutch, (IT Department), and it is top notch for sure. So I am optimistic that the SCCA is the right place for him to be. 

              Thank you for your response. I hope all is going well for you…  Diane

              ed williams
              Participant

                Hi Dmarie, a couple of links for you.  First one is from UCLA explaining SRS treatments in general, the second link is from this summer and new Immunotherapy research that is happening with brain mets. Hope that they are helpful. Ed https://www.youtube.com/watch?v=mnPN8YyfX_Y  https://www.youtube.com/watch?v=X5xGQpdp9OA

              Bubbles
              Participant

                I am sorry you are both dealing with this.  Here is a link to about a zillion articles (with interpretation) related to melanoma brain mets:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets&max-results=20&by-date=true

                The second one I recently put together and covers all basic, current melanoma treatments.

                Hope this helps.  I wish you both well.  Celeste

                  dmarie
                  Participant

                    Celeste, thank you so, so much! I will read these for sure.

                  adriana cooper
                  Participant

                    My wife was a patient at SCCA for 5 years. I would be delighted to answer any questions about the Dr's there or the treatments I have knowledge of, or any other advice I can give. I would be happy to meet with you for coffee anytime or help in anyway that I can. I really do mean this. I live in Monroe not too far of a trip to Seattle. I get around the area quite a bit. Feel free to contact me here or better at [email protected].

                    Sincerely, Rob Murphy

                    adriana cooper
                    Participant

                      My wife was a patient at SCCA for 5 years. I would be delighted to answer any questions about the Dr's there or the treatments I have knowledge of, or any other advice I can give. I would be happy to meet with you for coffee anytime or help in anyway that I can. I really do mean this. I live in Monroe not too far of a trip to Seattle. I get around the area quite a bit. Feel free to contact me here or better at [email protected].

                      Sincerely, Rob Murphy

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