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Snuffy Myers

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Posted 8/30/2011 10:58 AM (GMT 0)

Drove down to Virginia on Friday for an appt. with Snuffy Myers. The clinic is small and located in a remote and beautiful mountain setting. As others have reported the session cost 1600$ and is not covered by insurance. The staff was friendly and very professional. Snuffy told me that my cancer was very aggressive and that bone mets with a PSA under 10 (mine is now 7) was rare and signalled a difficult cancer to contain. He said that although I might have more than five lesions, I still might fit the criteria for "ogliometastatic". Basically what that means is that I might be a candidate for a curative approach. If the lesions can be exactly identified they will be radiated and hopefully eradicated. An aggressive ADT3 program is initiated and the hope is that the cancer does not return. The only facility that can accurately identify the lesions is Sand Lake Imaging in Orlando ( they use the new USPIO technology) and they are trying to precert with my insurance provider. I've got my fingers crossed. This would be three days of imaging and I'm sure it's incredibly expensive. I've been living for years with the knowledge that I have a very aggressive strain of prostate cancer and I now have a painful bone met in my sacrum that does not allow me take any mental vacations from it. It's been a draining experience and it's been a long time since anyone mentioned the word "cure" in a treatment plan. I don't know if this is going to be doable but having that glimmer of hope makes a difference in your day. Whatever the outcome I highly recommend Snuffy Myers and the AIDP clinic.

Jim

Posted 8/30/2011 11:36 AM (GMT 0)
Jim,

I'm so glad that Snuffy gave you a boost of optimism. It's great to know that there is someone out there who has an idea of what to do with such difficult cases. I hope everything goes well and that your insurance sees that the imaging, while expensive, could actually reduce costs in the long run.

I wish you the best, and thank you for reporting on your experiences. I think many of us have Snuffy's name at the front of our mind should things not go as smoothly as we would hope. Your report makes that alternative even better.

Nellie
Posted 8/30/2011 1:47 PM (GMT 0)
Jim, sounds like a good meeting and positive approach.

RE: Sand Lake Imaging- I had posted in the past about checking on the scans you are referring to. Everything about the scans is currently covered under insurance because the scans by themselves are used frequently with PCa. The only out of pocket costs I would have seen is for Feraheme, the identifying agent that is used. The est was about $900-$1000 for the total process.

Hopefully, you will find that this will be the same for you.

I live about 10 miles from their facility here in Orlando, so if you plan to head this way let me know. We can get together for lunch or something.

Good luck, we will be monitoring your progress closely. Give us a detailed report on this scan process. As far as I know you will be the first of us here at HW to go through this scan.

Sonny
Posted 8/30/2011 10:19 PM (GMT 0)

Nellie .. Trust me  .. you may want to consult Myers before anything turns south. He is off the beaten path but his approach saves lives and he will turn your head around about this disease. I'll keep you posted.

Sonny .. Much thanks for your input re Sand Lakes and all the data that you have turned me onto along the way. I'll be a stranger in a strange land down in Orlando, if we could hook up for a lunch and exchange our pca war history and info I'd love it. Talk soon.

Jim

Posted 8/30/2011 11:27 PM (GMT 0)
Jim,
I met Myers at the 2009 PCRI conference. The group I was representing did videos of several prominent doctors. Here is the video of Snuffy:

www.youtube.com/watch?v=CGtgGM0xn1w

Nice man. Unfortunately he just lost his mother but it's good to see him back st work...

Tony
Posted 8/31/2011 4:31 PM (GMT 0)
Hi Jim:

I am also looking at Sand Lake Imaging, being a patient of Dr. Myers. I agree that he is on the front line of treatment.

Sonny3, is the cost you calculated the total cost, or just the amount of the deductible after the insurance pays? I ask because being a Canadian, I will probably have to pay the full amount.

Houseboy
Posted 8/31/2011 11:02 PM (GMT 0)
HB, as far as I know that cost would have been my out of pocket for the feraheme agent. The rest of the cost would have been on my insurance carrier. I have no idea what the cost is for the whole thing.

Sorry I can't be of more help.

Sonny
Posted 9/2/2011 3:51 PM (GMT 0)
Hi:

Just to follow up, Sonny and Jim, I checked with Sand Lake for the total cost of imaging as recommended by Dr. Myers. It is approximately $5500 all in (for us Canadians, that is what we pay as Medicare will not cover out of province treatments without a convincing referral, and my uro has never heard of Dr. Myers!).

I'm going to do what Dr. Myers suggests, regardless of the cost.

HB
Posted 9/2/2011 3:56 PM (GMT 0)

houseboy said...

I'm going to do what Dr. Myers suggests, regardless of the cost.

smart!

Posted 9/2/2011 6:39 PM (GMT 0)
HB, two thoughts:

1  Perhaps you could get a "convincing referral" by shopping around for another urologist who had heard of Snuffy.

2.  Most things are negotiable.  Perhaps if you get to the right person at Sand Lake and explain things you could negotiate a lower price.

Tudpock (Jim)

Posted 9/2/2011 8:29 PM (GMT 0)
Jim,
Every bit of good news is always welcomed. Dr Snuffy is the best and if he says there is hope of a cure then go with it and hope he is right. Good luck.
Posted 9/12/2011 11:18 PM (GMT 0)
Jim,

Could you email me sometime? I have a question or two for you...

Thanks,
Jerry L.
Posted 9/13/2011 3:05 AM (GMT 0)
houseboy, as another Canadian, it seems to me this would be covered --- provided it's a recognized procedure a doctor says is necessary, and it's not available in your province, or less expensive elsewhere in Canada.

Of course, different provinces have different tweaks to their insurance plans, but I'd not give up on getting this covered. Like private insurance companies, our provincial ones sometimes need a squabble and some grumping to come through.

Good luck, and I applaud your going to see Snuffy Myers. Gotta love anyone who is happy to be called Snuffy --- especially when his dad also had the name and was awarded it for such honorable reasons!

Sheldon AKA Sleepless
Posted 8/20/2014 8:27 PM (GMT 0)
Why IS he called Snuffy anyway?
Posted 8/20/2014 8:31 PM (GMT 0)
His nickname. Haven't heard who gave it to him.
Posted 8/20/2014 8:37 PM (GMT 0)
You do realize this is a thread from 2011?

Is Oncas still posting? I wonder how things turned out

Mel
Posted 8/20/2014 9:40 PM (GMT 0)
Hey Mel,

I'm still holding back the devil. I don't post a great deal. I have a wealth of battle stories involving this disease, but a visit to this forum on any given day gets your humble back on PDQ. Consequently, I exercise an economy of opinion. I guess I like being an eye in the sky. With respect to my status ... Snuffy Myers has given me sound direction for the last three years. The laundry list of treatment plans has been mind boggling but I've been stage 4 for three years and staying strong.
This thread has moss growing on it.

Jim
Posted 8/20/2014 10:21 PM (GMT 0)
I also was wondering where Dr. Myers got that nickname. Here's what I found after a quick net search:

…"Dr. Myers wife (said that) Dr. Myers' father and his father's college roommate were the campus procurers of what might be called "spirits," and became known as Snuffy and Barney from a hillbilly comic. The name stuck and when Dr. Myers was later "in the womb" he was referred to as "little Snuffy". The name obviously stuck to him also."

Source:
www.health-forums.com/alt-support-cancer-prostate/dr-snuffy-myers-lecture-172903.html
Posted 8/21/2014 2:28 AM (GMT 0)
Lovely! Thanks for sharing.
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