Scared, Need Some Strong Warrior Vibes!

Good morning;

I too am stage IV, when I got the diagnosis I felt pretty yucky. I have been extremely blessed since then, but my situation is different from yours in that I started stage IV with a large sub-cut tumor with an unknown primary…NED right now thanks be to God. I can't provide advice, but praying for you. I believe in healing and I am sure you will get great advice from our fellow melanomies here!

Blessings,

Ted

HI Michelle – keep the faith!  My husband was diagnosed 6 years ago – Stage IV right off the bat.  It's been a difficult battle but he's hanging in there and so can you.  I pray every day for the strength to handle whatever today might bring and give thanks for every single day we get through.  You can do this!  Take care.

Ann

Hang in there Michelle. I was diagnosed stage IV in April 2013. It was already in my brain and lungs by then. After many rounds of brain radiation, Yervoy, a very brief run of MEK (I'm a weird BRAF neg), and thoracic surgery… Keytruda finally became an option for those with "uncontrolled brain mets" when it gained FDA approval in late 2014. I was on it immediately, and with good response. Everything was going along all fabulous and fine, until late January 2016, when a new brain lesion decided to rear its ugly little face. I thought I was done for. I assumed the worst, that Keytruda had stopped working for me, and it was only a matter of time before things went all to hell in a handbasket. We gamma radiated the late blooming lone wolf, and I continued with Keytruda infusions. I developed some not so nice side effects from the Keytruda about 6 months later, and although still showing that bit of gamma treated lesion in my brain, we assumed scar tissue, and I "took a break" from the Keytruda. That was July 2016. I had a brain MRI this week and am due a full body CT in 4 weeks….. but thus far… still clear. Soooooo… why did this little bit of progression show up in early 2016 in the midst of Keytruda treatment? We really don't know. It happens sometimes. Thankfully, it doesn't always signal a lack of the meds working, and impending progression. It does suck to hear something new has popped up, and that there are "no other current options at this point". That's a soul crushing weight to push through. Just know that this "step up" to stage IV with your node doesn't necessarily mean you're "in for it" now. Take care of yourself as best you can, and try to eliminate stress as much as humanly possible……. yeah… I know that's going to be a HUGE task… but try. 🙂  Baby steps forward, and don't let the real panic take hold, until there is something to exibit real panic about. You got this!

I appreciate the responses as they helped me too. I am in a funk after battling stage IV for a year and a half. They just found melanoma in 2 enlarged lymph nodes and I start on Opdivo/Yervoy combo on Monday. I have been taking  Keytruda since being diagnosed in January of 2017. 

I agree with the others that responded. Just because we are stage IV doesn't mean we are ready for hospice. I think this forum is wonderful because we can lift one another up and let others know that they are not alone. You are not alone! This is a tough battle but have faith in our God that He is right next you in your fight. We are there with you as well. You will be in my prayers and I have faith that our God will lift us out of our funk. We will return to our battle renewed and reinvigorated and live happy and fulfilling lives until we are OLD!!!! 

Hi MichelleRGH, there have been many that have had similar tumors pop up and have used surgery to remove the melanoma with good outcomes. Sometimes the pd-1 drugs keep things under control but need a little help like radiation or surgery or Tvec injections and in the future combinations. There are several exciting new options coming with some being targeted specific to those that progress on pd-1 drugs, two examples are Lag-3 and NKTR–214. Both of these drugs are in trials and at ASCO this year there will be updates. There are more trials with other checkpoints being investigated like OX-40 and even after the pembro- IDO recent failure there is another IDO drug in trial with Nivo from a different drug company. Bottom line there is a lot going and MD Anderson is at the cutting edge of the research. Best Wishes!!! Ed