Introduction: Stage 4 diagnosed Nov. 1 2017

Hi,

I'm writing this as to give some hope to some people.   I had a mole removed about 6 years ago that was 1A. They followed the lymph drainage down and sampled that node, it was clear.  Had a carefree life for about 6 years until I started an incessant light cough and started to lose weight.

My wife noticed a lump in my chest and I went to the Melanoma clinic I was seeing and they took out the lump and then a week later I was diagnosed with melanoma.   I had a large tumor (12 cm) on my left lung, Two tumors on my pancreas, one on my liver, and then some other places around the heart and within my gut.

My doctor wanted to see if it was B-RAF and we waited a couple of weeks for the results.  During that time (within about 3 weeks), I progressively got worse.  The first thing that happened is that I got really sick and threw up at work.  That pulled a tumor out inside my gut and caused internal bleeding.  I got a follow up CT scan two weeks after the first one and it showed a few tumors had grown 4cm since the first cat scan.  It turned out that one of the tumors was putting presser on a bile duct and I was Jaundice.  They put a stint in the bile duct and that got better and we decided, since the cancer was so aggressive that I would begin a treatment immediately.

They put me on Nivamb and Obdivo together.  A few weeks after the first treatment, I found myself in the hospital again (with another CT scan).  The CT scan showed more growth (and I was feeling it).  I live at 5200 feet and it was getting harder to breathe.   The doctor at that time said it hadn't been enough time for the treatment to work.  I could see in the ER Doctor's eyes (all of them) that they knew I was dying and it was pretty bad (as they reviewed the CT scan).

I noticed a  bump developing on my shoulder about the size of a small marble.  Also one some other places in my groin.

I made it to the second treatment and a week or so after that one I ended up in the ER again.  With another CT Scan.   This CT scan was a breakthrough in my hope as it showed almost no changes in tumor size.  One tumor went up 2 cm, one went down 3 cm.   At that point, I felt that the progression had been slowed and I actually had some hope.   

I took the third treatment (you are only allowed 4) and I ended up in the emergency room again (It turns out I got my first kidney stone!).  Of course, another CT scan.    I had noticed I could not find the lump on my shoulder anymore.  It was gone!  I was joking about it because that was how I could tell if the treatment might be working without a cat scan, by just feeling that lump.   This last CT scan showed significant tumor size reduction.  They said my pancrease was grossly unremarkable (meaning they didn't have much to say).  The lung tumor had reduced to 5cm.  (I was not not coughing)

I had my 4th treatment (sufferring through the side affects) and I'm not sure where I stand.  I won't get a CT scan until May and they put me on an obdivo every two weeks type of thing.   

As I've read here, I am dreading the day when it returns and I know how much fun it was to almost die from it.  I was getting pretty bad.  I lost 70 lbs. since the diagnosis and am normal weight now.  I still have alot of stomach issues, I virtually have no muscles, my thyroid is shot (I will soon take meds for that).  My liver is still healthy and they told me it was unusual for people to make it to the 4th treatment without having to stop because of the liver damage.

I have much to be thankful for.  My hemoglobin (I think that is the measurement) went down to 8.1.  They say they would need to give me a tranfusion if it went lower.  The next treatment 3 weeks later it went back to 12-13.  I consider that a miricle as they were telling me that would take months to recover.

All of this has happened in a 3 month period.  I went from almost being on hospice to being back at work and functioning.  The treatment has bought me more time to prepare my family and get our finances in order, but I just wonder what life will be like now?  I hope my stomach doesn't always hurt, have lots of gas.  I hope I can get strength back to do work around the house……

My hope to others is, that if the immunology works, it may start as early as 4-5 weeks and can work very fast if your body/cancer is responding.   I will study this forum for those who have had reoccurrances and how they deal with it.  Perhaps this is just buying time until they learn more about this cure and can make it less damaging as far as side affects.

One more not about side affects.  They were hard, but I always thought about people who took real chemo and radiation and how sick they became.  I count myself as fortunate not to have to go through that.

bmm