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Update

Posted By
mortalMike
2/11/2019 2:42pm
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Replies: 4

Well, hello everyone. I’m back to give you an update on me. Some background: Somewhere around the first week of Aug, 2018 I noticed what looked like a pimple on my upper chest. Couple of days later it got a little bigger instead of going away. Red flag 1. Something different on my shin. I showed my wife and said I was going pop it. She told me a story about a woman she works with and her “popping” a pimple. It turned out to be MRSA virus and by popping it she inadvertently made it worse. That scared me just enough not to mess with it.
Over the next 4 weeks this thing grew and hardened but continued to look like a pimple or a boil. During this time I put in a call for an appointment with my dermatologists and had to wait to get to see him. After 5 weeks since I first noticed this thing I get to the Dr. and he takes one look and says that it needs to come off for a biopsy. This was 10/26/2018. The report comes back on 11/01/2018 and they say I have “Malignant nodular MELANOMA”. All sound stopped, I had tunnel vision in that I could only see the doctors face, I had a unpleasant smell about me and my eyes were getting wet for some reason. I’m 69 and a manly man fighter. The report went on to say the tumor was at least 4.0 millimeters and was composed of atypical melanocytes with numerous mitoses and cherry-red nucleoli. Pissed on myself. The Dr. said a bunch of other stuff that I did not hear because I was trying to figure out how to get out of there without anyone seeing my wet pants. I did catch that I needed surgery NOW.
Surgery was set for 11/5/2018. Red flag 2. Why so fast? My dermatologists told me to stay off the internet for now because we did not know for sure what was going on with me and I might unnecessarily upset me. Red flag 3. What would upset me? This is where I came across this Melanoma Research Foundation and particularly the MPIP or patient forum. They said the surgery will would cut out all the melanoma in that area. They also said that they needed to take out 2 lymph nods in my neck to biopsy to see if the cancer had spread to my lymph nodes. Red flag 4. Ok, surgery over, I have an 8 inch scar on my chest and minus 2 lymph nodes. The biopsy came back: lymph nodes negative and clear and they cut out this big area and say they got all the cancer.
Great news right? I also got some great advice and information from this forum. The people on the forum told me to get a MELANOMA specialist. I did and got hooked with the Moffitt Center in Tampa. Since 11/5/2018 I have had a more in-depth analysis of my biopsy done. Its known as a BRAF mutation analysis. It said that no mutation was detected in the targeted areas.
I also had a CT NTAP (CSCAN) of my neck, thorax, abdomen and pelvis all with contrast. That all came back good with no cancer.
Also had a MRI brain scan with contrast with no cancer. Just got the good news on those tests.
My doctor is also a research doctor. He says that I am cancer free now but they are not sure if I will remain that way. Red flag 5. They give and then they take away .He wants to put me on immunotherapy treatment with the drug Opdivo (Nivolumab). Anybody know anything about this drug? I see now that I’m gonna have to be more active and knowledgeable about my own condition and treatment.
Any new people out there reading this after just finding out you have cancer, SLOW DOWN. Change pants. Start reading and get involved with this info portal. You have a lot to do. I’m still scared but not pissing on myself. 

ed williams - (2/11/2019 - 3:12pm)

Hi Mike, here is a link from last summer talking about the new treatments for stage 3 patients also called adjuvant treatment. Onclive is a pretty good source for up to date research and opinion on best practises. Hope the videos help you to make an informed descision. https://www.youtube.com/watch?v=nD65VIIRezE

ed williams - (2/11/2019 - 3:13pm)

Here is a second like to Onclive, you have to join, but they don't send you shit so no worries!!! https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/molecu...

Bubbles - (2/11/2019 - 3:35pm)

Yep.  Melanoma sucks great big stinky green hair wizard balls.  Yep.  This forum is filled with kind and knownledgeable peeps.  Yep.  Knowledge is power. I took nivo for 2 1/2 years at Moffit from 2010 to June of 2013 for Stage IV melanoma and I remain melanoma free to this day with no further treatment.  You can do this.

Here is a primer of basic melanoma facts and treatments that you may find helpful (if I haven't shared it with you already):  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

This is older but still true...an explanation of what BRAF status means:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html  

Ask more questions as you have the need.  And...thanks.  Taking time to help others is a powerful thing.  I was always taught:  See one.  Do one.  Teach one.  I wish you my best. Celeste

Threefitty - (2/11/2019 - 10:50pm)

I got the vapors and passed right out when the MD finally filtered down to Stage 3B and them statistical apples.

It is hard to imagine that as recently as 6/17 meant yervoy or clinical trial (blind) just for a chance at Opdivo. The CT I was in actually closed the arm of "yervoy only" during the study in early 2018. 

Progress not progression!