Hello to All

Posted By
STL Mike
10/10/2018 4:04pm
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Replies: 6

I've been lurking w/o registering for about a year now so decided to finally "show my face".

They recently changed the way they do patient info on my centers website so I'm still figuring out how to access it all.

My first run in with melanoma was in the mid to late 80s when I had an area excised over my left shoulder blade. I was never staged as far as I know and I remember they injected me with a dye that was the made from the shell fish flamingos ate that made them pink.  I was told no problems and life went on.

In June of 2015 I was seeing my primary and he was concerned about a rather substantial weight loss over last six months.  Went and had one of those swallow this nasty stuff so we can look at your insides exams.

Well my digestive tract was normal but they saw a shadow where my liver was.  So back for another test. CT scan this time.  And yep something fishy with liver. Next step biopsy.  And now staged as IV metastasized to lungs, couple bone areas, adrenals, and lymph glands as well as the liver. BRAF - 2.  Brain MRI negative. They just found a sign saying "This Space for Rent".

I got in to a stage 3 trial for Yervoy/Opdivo combo. Started in Oct 2015.  Did the every 3 weeks with the combo then every 2 weeks with just the Opdivo.  Aside from being tired all the time was going pretty smoothly.  Was able to arrange treatments/labs for late in afternoon so minimal time off at work. 

Jan 2017 was NED for the 2nd time so treatment was stopped.  May 2017 scan showed spot on lung. Another biopsy which was positive and back to treatment.

Dec 2017 had been NED again for 2 scans and was developing side effects from treatment.  Losing toenails, skin lesions.  Saw dermatologist  and consensus was it was related to the Opdivio.  Treatment stopped. Been on Prednisone varying dosage since then fight the lesions. Looks like I'm winning that. Down to 5mg a day and see Doc Mon and hopefully will get off this stuff which has it's own Wheel-O-Side effects. In the interim in Jul 2018 had core punch biopsy for spot on my neck.  Aug 2018 had an excision on neck with clear margins which was in situ.

Next scan is 24 Oct. Really keeping fingers, toes, and eyes crossed hoping still NED.

I have followed everything on this forum and I have found hope that although there is no "cure" we can keep melanoma at bay. I am grateful for all the links to info that everyone has posted. Wealth of info in each of them.

sharonlynn210 - (10/10/2018 - 4:31pm)

How old were you when you had your first melanoma on your shoulder?

Sharon

STL Mike - (10/10/2018 - 4:58pm)

Doing the math here,....was somewhere between 85 and 87 so I would have been ...34 to 36 at that time.

Just as a side note Every doctor I 've seen has flat out stated that melanoma doesn't stay dormant for 30 or so years and then come back.

Since a primary site was never found for this bout I'm a lttle confused after reading this:

https://www.facs.org/media/press-releases/jacs/melanoma0613

https://www.aimatmelanoma.org/after-treatment/recurrance-of-melanoma/

Those are the latest I have found regarding come back after an extended period of years.

WithinMySkin - (10/10/2018 - 9:37pm)

Hey Mike! Welcome to the 'group' - sucks that you're going through this, but glad you found us. I'm convinced that the immune system can often keep cancer at bay for many years and then as we get older or our immune system weakens for one reason or another, back comes the melanoma. It sounds like you're kicking it to the curb - hoping for continued NED status for you!!!

Lauren

WithinMySkin

www.Withinmyskin.com

 

MarkR - (10/10/2018 - 4:54pm)

Wow that’s quite a ride!

hope all continues to go well with treatment and you get back to confirmed NED again soon

Johnjk04 - (10/10/2018 - 6:03pm)

Mike wishing the best for you with the scans. I know a lady that had a melanoma removed and then the melanoma revisited her 21 years later. I'm sure other people will comment on how many years before their melanoma returned.

John J Kissane

MelanomaMike - (10/12/2018 - 4:01pm)

Uncle Mike! WELCOME HOME! a big hug and SALUTE to you man, your time there in Nam is just as IMPORTANT (to me anyways) as our shared desease, Melanoma..i often wondered if we had any Vietnam Veterans here, like yourself, my Dad (rest his soul) was there, 1st Cav 65/67 (2/20th Aerial Rocket) door gunner & parttime crew chief..i believe the Dioxin is the cause of my Melanoma, its listed as a birth defect but, like you said, how can it lay dormant then pop up 49 years later? (my age)...today my tumors are in both lungs, all other tumors in my past where all in my left leg from 2008 to last year (2017)...
I hope you pull through man, glad yer here though except under these circumstances!..stay connected ok?..Mike also!

Im Melanoma and my host is Mike..

www.covvha.net