[karmajunkie]

Jonathan, my heart truly goes out to you. Someone very close to me was diagnosed with stage 3 melanoma a few months ago, so while I can barely imagine what it must feel like to face this, I do know what the medical picture looks like and the information available looks grim.

I don't want to tell you about your disease, but if you haven't yet, please find a way to get evaluated at md anderson. They're in Texas, and possibly the best (at least top four or five) place in the world to be treated for melanoma. And they're one of three hospitals in the country with trials ongoing in TIL therapy (sometimes referred to as ACT), which, having done as much research as a lay person can do, seems to the most promising avenue of treatment with long term response rates as high as 70%.

And just to give you some hope, as horrible a diagnosis as you've been given, there has never been a better time in history to receive it. There are literally new treatments coming down the pipeline every few months.

[darthclue]

I am hopeful that I live long enough for the next great breakthrough to happen. The treatment that I am on didn't get FDA approval until late 2011 and is actually working to shrink the tumors. Unfortunately, they don't know where mine originated and it has progressed so quickly that they don't give me good odds. I literally went from being fine one day to having cancer the next. There were no external signs and the internal tumors are huge, ranging in size from golf balls to soft balls.

I have hope but I'm also being realistic based on how my treatment has progressed. I have to plan for the reality that I may not have more than 9 months and hope that I'm still here in 15 years. It's a very difficult place to be emotionally.

With regards to MD Anderson, I've heard great things from them, however, I trust my doctors and they work with many of the doctors from MD Anderson. Before they did my gamma knife treatment they actually sent the MRI results over to a neuro-surgeon peer group to ensure that the right actions were being taken. They have taken no chances and are doing the right thing as far as I'm concerned. I continue to do my own research looking for the next best thing and will definitely consider MD Anderson should I find that they have something better available than the treatments I'm on.

[jreed91]

I'm glad you mentioned this. My father just recently passed away from this terrible disease. But if this was just a few years ago he would of had almost zero treatment options. So many new treatment options are coming out. Be sure to get with a specialist they are the only ones who really understand this disease. Also look into PD-1 inhibitors they are only in clinical trials but have shown a lot of promise as well. Stay strong you're not gone yet and even though it might seem like it's the end, it's not.

[glaugh]

As of yesterday, PD-1 drugs are now available for compassionate use, too: http://smh.com.au/national/bittersweet-victory-for-save-lock...

They have pretty absurdly high success rates.

[karmajunkie]

and it was only a couple of months ago that BRAF and MEK combo therapies were FDA approved... after decades of melanoma being a diagnosis without a lot of hope, the last couple of years have seen some really amazing advances.