Charlie S

Did you ask your Doc why he referred you to a specialist?

Or what kind of specialist?

It’s okay to freak a bit; but look at the facts at hand and not necessarily the internet; and most certainly do not jump to conclusions.

What YOU think is a possibility may not even be in the realm of possibility.

ASK your eye doctor what alarmed him, and why, specifically, did he refer you away and to whom and what for what reason.  He is your doc after all.

Try not to jump to conclusions based on fear……………get facts.

Yes, the waiting sucks, but stay off the internet medical bandwagon and call whatever doc did the referral and ask HIM;  knowledge is power.

And again, it is quite okay to freak; but you MUST work the problem; and sometimes that takes time………..and a big deep breath.

Cheers,

Charlie S

 

Duh, seems I was embracing cocktail hour a bit toooooo much and my math skills were suffering…………that game total is Charlie 34-Melanoma 0.

NOT 44.  Jeeze I”m old but no that old !

Cheers,

Charlie S

Dx’d Stage III unknown primary 1987.  Surgery and lax cell therapy.  Quiet for 9 years until 1996 then roared back Stage IV.  Year of Interferon (yeah, yeah, I know all about it……………….NOW) surgeries again, all in all I think eight recurrences over the following nine MORE years, did I think 47 doses of IL2 2005, quiet for 3 more years, more surgerythat was 2008 then quiet for five more years and then onnnnnnnnnnnnnnnnnnnnnnnne more dance with the devil in 2013 and did Yervoy.  That finally did it………………(well given my track record…………..maybe-maybe not !)  All quiet for 8 years now.

Oh yeah, throw in two back surgeries and a stroke somewhere in there……….I digress.

When I was first diagnosed in 1987, the Onc said I was a time bomb and it was not a matter of if I would recur but when.  I had no earthly idea melanoma would carpet bomb my hind end.

I have lost a lot of people very close to me from Melanoma over the years and I have partied thru the night with many as well.

Yep, I do have a dose of survivors guilt.

Durable remission, dunno.

All in all though I am quite Undead and the score now stands at Melanoma Zero—Charlie 44………….and I would still win if there is ever a medical show called “Scar Search” and I do think it sucks that there are NO frequent scanner miles.

That’s my story and I’m stickin’ to it.

Cheers,

Charlie S

You are the Rascal are you not?

Of all the people here that have bitch slapped and gently nudged people to empower themselves with knowledge, education, research and brains, you stand far and above any of those that have posted over my years since 1996 on this board;.

You hold a singular , measured, educated, informed and outspoken voice with a silent scream that I hear, and hope others do as well.

So. if I may, and in deference to your husband; offer a gentle………………nah, make that a big sloppy sloppy kiss on your cheek.

You have made a world of difference here Miss Melanoma Brainiac and do not forget that.

Support , I have found is a lonely road.

Charlie S

Science based alternative/complimentary medicine is fine,  There are many homeopathic approaches that aid in the care and comfort of cancer patients; but not one of those approaches is a substitute for science based treatment.

Conspiracy based bullshit like ozone therapy (among others)is nothing but people preying upon people for money.

I would suggest that you set down with your husband and reduce to writing his living will, advance directives , the terms he wants to die, how long and under what circumstances he wants his life artificially  sustained , to what extent he wants to be revived, and who will be his legal representative  (medical power of attorney) in the event he is unable to make a decision.

Lame as it is, It is his chance and therefore his choice.

There is no need to argue the point with him, but insist on doing due diligence.

 

Charlie S

 

No

I'm a bit more hardcore than most around here given my history, but I can tell you when I had my second recurrence in 1996 I sat in a chair at my surgeons office (same one who did my surgery in 1987 in the OR), he shot me up and started cutting.

As I sat in the chair we were chatting when he plucked out a translucent marble about the size of a garbonzo bean from the six inch incision in my chest, he handed me the forceps,let me study it and then I plopped it into the specimen bottle.

You must remember that my surgeon and I, which I do with all surgeons that stick a knife in me, had a special relationship.

Turned out at pathology it was a recurrence still at Stage III.

I've always considered myself a leading contender for a yet to be announced series of "Scar Search".

Shortly after that office surgery I had a more extensive "asleep" surgery to acheive margins and some additional nodes removed.

Anyway, if you really TRUST the surgeon, I'm cool with what he proposes.

Forget your family, it is your chance so it is your choice.

Charlie S

Here is how and when you will know.

You simply go about the business of living and stop obsessing over "data"….the years will go by……or not.  You will be the first to know.

To the best of my knowledge human life is finite……………none of us are getting out of here alive in short.

If estimates you want, here are a few.

1987, dx'd Stage III unknown primary, "estimates" were it was not a question of if, but when.  The time bomb theory.

Reoccurence Stage IV 1996…………..anyway I will not bore you with the details , I have went  through well over 200 individual injection/infusions, a dozen surgeries from 1996 thru 2008.

Just for a bonus last year I got another surprise recurrence and did Keytruda as a result of that surprise.

To sum up:  Charlie 30 Melanoma 0

You have GOT to go about living…it is YOUR life; live it; and not as a statistic…………..but as a living, breathing, loving, caring, all out fun seeking person so when you DO die you are a spent cartridge.

More than one doctor has looked at me after I gave them my medical history and said "how can that be true ?"

Well, because I am standing here in front of you and I have the medical records to prove it, that's how.

 I am not, nor have ever been, nor will ever be………………… a statistic.

So that's my story and I'm stickin' to it.

 

Cheers,

Charlie S

Bristol-Meyers Squibb Patient Asistance for Yervoy (ipi)

https://www.bms.com/products/patient-assistance/pages/yervoy-uninsured.aspx

For Merk Patient Assistance for Keytruda

https://www.merckaccessprogram-keytruda.com/hcc/the-merck-patient-assistance-program/

It really is true and possible to receive either one of these drugs at no charge.

Check it out.

Hope this helps.

Cheers,

Charlie S

 

I'm surprised, given your history, that you would ask this question.

First off with this assumption …is the BC you are referring to Basal Cell Carcinoma?

Next, what makes you think , if it is Basal Cell Carcinoma, puts that person at high risk  for bone mets?

Rarely does Basal Cell Carcinoma metastisize to the bone.

Without symptoms, there is no answer for you.

With symptoms ( bone pain, muscle weakness) a Pet/CT overlay scan with and without contast should do it.

It strikes me that you are asking  a "screening" question versus a diagnostic question.

 

I

As a answer to your final question.

Nope.  Nor should you.

Charlie S

 

Taking a drink from a cocktail, I almost spit up through my nose on this one.

When I was a kid, I never could tan, always burnt.

So, as a solution for that, when I was maybe 10 or 12 years old, I saved up my allowance and bought a infrared bulb; basically what was then used as a french fry warmer and I put it over my face ten minutes at a time over and over to try and get a tan.

Same result, no tan, burnt.

This does not qualify what you are asking about but I could not help to recall that french fry bulb and many days riding a tractor with my shirt off in Kansas that came along with blistering sunburns probably is why ………………..well, you know.

Cheers,

Charlie S

Taking a drink from a cocktail, I almost spit up through my nose on this one.

When I was a kid, I never could tan, always burnt.

So, as a solution for that, when I was maybe 10 or 12 years old, I saved up my allowance and bought a infrared bulb; basically what was then used as a french fry warmer and I put it over my face ten minutes at a time over and over to try and get a tan.

Same result, no tan, burnt.

This does not qualify what you are asking about but I could not help to recall that french fry bulb and many days riding a tractor with my shirt off in Kansas that came along with blistering sunburns probably is why ………………..well, you know.

Cheers,

Charlie S

 

 

 

 

 

 

Dear Anon,

It is certainly a challenge when it all comes down to your chance and therefore your choice.

I have no individual treatment opinion for you…………..I can however offer some decision making tools that have worked for me as a Stage IV patient of some years.

Just like you, melanoma has waited around a while before it came back to bite me.

Just like you, over that time treatments and trials  are new and emerging that can be confounding to evaluate and make sense of.

Here is what I did and still do.

Take a piece of paper and pen/pencil.  Do not do this on a computer….it is not the same.

Put a title of one treatment option and draw a line down the page, then draw another line down the middle of that line…………one side is why yes to do this and on the other side is why no.  Assign a number to each yes or no.

Put up a title of the next treatment option and do the same thing.

Put up another title and keep going.

Now, add up the number in each treatment category , plus and minus, from top to bottom, left to right,  and see what you come up with.

Doing this has always helped me sort out emotion and fear and helped me reason  my way through making the best decision for me, and as a result, being confident that I made the right decision that I can stand by, advocate for and believe in.

Just sharing some of my coping skills over the years.  Take it for what you will.

 

Bottom line, it is STILL your chance and as such your CHOCE……..no matter how you go about it.

 

Cheers,

Charlie S

 

 

 

 

 

Now that is what I would call a life well lived on your own terms !!

Here is to you Paul,…………………………..Cheers !!!!

Charlie S