Options for treatment.

I am sorry for your husband diagnosis and for the stress you are going through.The anxiety of dealing with melanoma never really goes away .But once you get over the initial shock of diagnosis,in time  you learn to live with the reality of this cancer while doing your best,really.People on this board are very knowledgable and supportive.I'm sure they will chime in soon regarding treatment options and sharing their experiences.A giant leap in treating melanoma had been made with the new immunotherapy drugs that were introduced in the last few years.Bubble had posted the link of available treatment options on multiple occasions.The new imminotherapy drugs have helped many  stage IV patients to achieve NED status /no evidence of disease/ or stable disease whilst extending the OS. So hang in there and try to focus on a positive outcome considering all this information.Bless!

Hi Addie, start by doing lots of reading from good sources like ASCO,ONclive, and try and find a good melanoma specialist. If you tell the forum what part of the country you live in, someone will be able to give you a good oncologist to start with. Reading about melanoma and immunotherapy drug like Ipilimumab and Pd-1 drug like nivolumab and pembrolizumab is a good starting point. You should ask your oncologist if your husband Tumour has been tested for Braf mutation. If Braf positive then another set of treatment options opens up with targeted therapy. Here is a recent video to get your enducation started, and if you look at the other video on the right, you will find more related melanoma topics. Best wishes!!! Ed https://m.youtube.com/watch?v=zaq1oMnY6sE

Hi Addie – most of us on the forum have been in your shoes.  My husband was diagnosed 5.5 years ago with Stage V melanoma with brain mets.  We had to immediately jump into treating the brain and he had gamma knife radiosurgery within 2 weeks of being diagnosed.  It was overwhelming.  Treatment options have expanded since then and he did not have lung mets but I imagine you will be hearing about several treatment options and he may well start with immunotherapy.  I can only tell you to take this one day at a time. Deal with whatever the day's issues are and start again tomorrow.  Feel free to email me directly at annmartin34@gmail.com if you need to talk.  Take care.

Hi Addie… sorry to hear you guys have been tossed into the mela-mixer! I have had lung lesions. I was diagnosed stage IV with lung and brain mets back in April 2013. Things have changed in treatment options since then. I'm a "weird" BRAF, and was able to get MEK for a short time through a research project. I also had the full 4 doses of Ipi (Yervoy). Eventually, docs removed the largest lung lesion, along with a smaller one next to it, by taking out the lower right lobe. That was all before Keytruda (Pembro) came along as FDA approved. It was my saving grace, as the brain mets were popping up faster than anyone was comfortable with! I finished active treatment of Keytruda in July 2016. My CT scan last month was STILL clear of disease, as was my brain MRI from two months ago…… next brain scan is this Thursday. : )  All of the info is completely overwhelming at first. Your head will spin and spin. The best thing you can do, is get yourselves hooked up with the best melanoma specialist within your "general region". The National Cancer Institute has a list of recognized Comprehensive Cancer Centers across the US (assuming you're in the US).  https://www.cancer.gov/research/nci-role/cancer-centers  No offense to general oncologists… but those specializing in melanoma are going to have FAR more experience with the latest immunotheraputic treatments and their side effects.

Hi Addie,

Sorry for what you and your husband are going through.  My best advice – make sure you are seeing a melanoma specialist (an oncologist who sees lots of melanoma patients and is familiar with the treatments…much has changed in that past 5 years).  Next – arm yourself with knowledge….as you are working toward right now.

Here is the post I put together that was referred to above:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

To offer hope:  I was first diagnosed with melanoma in 2003.  I developed lung and brain mets in 2010.  I was treated with surgery, SRS (radiation to the brain met) and Nivolumab (Opdivo) in a trial for 2 1/2 years.  I remain alive and NED today!!!  There is hope.

Read and learn.  Ask questions as you need. There are many wonderful and wise peeps on this forum.

I wish you well.  Celeste

In 2015 I had stage 2b melanoma on my head. 1 year later it was stage 4 with 1 tumor removed from upper shoulder and 7 mets in my lungs. I started ipi/nivo combo in July 2016. I never worried about side effects of these drugs as any side effect was better than death by melanoma. After 5 combo doses and 18 nivo doses I was NED in August of this year. Just had more scans last week and still NED. I get nivo every other Friday and have had 25 doses now. I have had multiple side effects with 5 or 6 since the second combo. My side effects have not been as bad as most people or I just tolorate it very good. I have worked full time the whole trip. My dr may stop treatment if my next scan comes back NED. As far as side effects goes you just have to see if and which ones you get. When the rash appeared the second week after my first combo I jumped for joy as I new my immune system was reacting to the drug and working. I still have the rash which flares up after each dose but it has never itched, lucky me. I have vitiligo, my immune system knocked out my thyriod gland, salava issues, horrible fatiuge with insomnia but I am still here. As far as handling the life and death issue goes for me it was easy. I am 58 and for 30 years I have known what is next for me after this life. It is hard to leave a loved one behind but I try to remember me dying isn't about her but me and I am ok with it. All I can do is what the dr wants and if it is my time then it is. I find it exciting that I may get to see what awaits us. Your husband finds himself with the same question I had. Is it better to know how much time I have or to not know when I may die. I chose to know when because I did all the things most people never get a chance to do when they die suddenly. I don't know how long I will remain cancer free and my cause of death may be something else but for now I live my life as nothing has changed. I am a happy man. I hope something I wrote helps, the immunotherapy drugs worked great for me as all 7 mets are gone and side effects are a small price to pay for living.