Is there a prize for having it spread to this many places?

Oh, I am so sorry to hear this 🙁 My husband had a similar experience. He was first diagnosed stage 4 last February with 2 brain mets and 2 lung nodules. A PET scan showed no other cancer in the rest of his body. Then he had to get a craniotomy and lots of brain radiation so we couldn't start immunotherapy right away.

Two months later … When he did his baseline PET scan (well, "baseline" but also kind of an emergency because he was so sick) in order to start immunotherapy, we found it had spread to basically every organ: one lung had collapsed under the tumour burden, spine, pelvis, femur, jaw, liver, kidneys, spleen, adrenals, multiple soft tissue lesions, still in his brain of course, probably more that I'm forgetting to be honest. It was just devastating. I saw the PET scan several months later and his whole torso was just one huge cancerous mass.

So, yeah, it can spread that quickly and it really sucks. I'm sorry.

In my husband's case, he was able to go on BRAF inhibitors and those cleared him up very quickly for several months! 98% tumour reduction. Within a few weeks he was off home oxygen and walking around again. Radiation to the metastasis in his spine, and, later, a steroid epidural to the same area, also helped his pain a lot. To be honest I think effective pain control is really just as important as trying treatments. It's no kind of life when you're in immense pain all the time.

Maybe BRAF inhibitors would work for you, or maybe it is time to introduce Yervoy/ipilimumab alongside the Opdivo/nivolumab.

Other people on this board also have some pretty miraculous stories to give you some hope! I hope they will chime in. In the meantime I hope you get some effective pain relief soon.

Hi WW,

I'm so, sooo sorry you've been dealt this blow!! I can only imagine your devastation – mel didn't happen to me, it went after my sister but I think I understand how shocking a fast jump from stage 3 to 4 is. Her spread was also very fast, very extensive >> spine, other bones .. all the organs you mention and all had multiple mets. BUT – targeted and immunotherapies did the job – totally!! She was NED a year a half later and has remained so. 

As CJM22 said, there is hope – in fact, there's a great deal of it!! You'll find many caring and feeling people here who have been exactly where you are right now and they're doing well today. Hopefully, many more of them will respond.

During the most devastating times for me, I found it really helpful to read their stories – I read the profiles and histories of everyone who posted an NED story!! It helped because, while my mind was just a jumble of anxious and fearful thoughts, I learned there was "a way through this" … that people did recover and survive this demon disease – and all of the information their stories provided helped me to focus!! Helped my sister too – tremendously.

As CJM said too, likely your treatment will now become more aggressive. You can learn about everything that can and may happen here on this site – treatment options, side effects, etc. The knowledge and information sharing is invaluable. All of that >> arming myself with info and knowing there were many folks successfully treated, helped bring me out of "devastation" mode. 

Right now … my heart goes out to you and I wish you the very best of outcomes but please know that you are not "alone" and that you can get through this!!! Take care.

Barb

Thats awful. My husband went from a small mole removal in 2011 to Multiple brain, liver, kidney, neck, bone tumors this november, total shock. I can imagine your fear and frustration. Seriously though I was on this forum as "Desperate" a few weeks back as my husband was deteriorating rapidly, dragging left side  then unable to walk and eventually in wheelchair with left sided neglect, drowsy and confused to being fully self caring, alert orientated and happy. Initially he had 14 brain tumors then gained another 7 in two months.The "miracle" all happened after we switched thrapy from Keytruda infusions to BRAF and MEK targeted therapy. It has really been a miraculous transformation and one I never thought was a possibility but I was wrong. Hope is alive and you have to know you have great medicines around now. My husband had a large boil like melanoma on his neck that the dermatologist decided to leave as he thought it would be a good "window" to see how he was reacting to medicaition and after two days my husband already noticed it was smaller and now after two weeks its gone. good luck to you. One day at a time xo

Helloooo Wicked Witch – I believe that I already responded to you but to be sure I'll give you my status now.   In 2012 I became stage IV with mets to the brain (quite a few), both lungs, liver, kidney, gall bladder and the left adrenal gland. After a couple of craniotomies, Gamma Knives and the Ippi / no one combo I was declared NED eight months later. So right now I am 6.5 years cancer free. So don't think that you have it the worse, you have plenty of companions here, some a lot worse than you. The only item that can conquer fear is hope and that is what all of us are laying on you today. Maybe we can change the WW to the good and gentle witch from the south ( Wizard of Oz). You are not alone, we are all in this mess together.