Thinking about seeing Dr. Myers - anyone have any info to share?

JohnK:

If you use Myers as your consulting oncologist you will still need a local treating oncologist for injections, referral to local specialists for other issues and maintenance. You do not lose your local guy (gal). If you try Myers you will know whether the money is worth it after one visit. That visit will be 2000$ or so with all expenses. These are tax deductible expenses so your final cost is well less.
Make sure your local onc is comfortable with the working arrangement with Myers before you make your final decision.
No doctor has magic beans. If you are happy where you are, great.
If every oncologist had an attitude of confidence, optimism, independence from the tyranny of proven, accepted methods and a personal experience of the diagnosis we would not need Myers and others like him..

I've heard very good things about him, although I chose to see Dr. Lam and Dr. Scholz. I just had a better feel about them and I really found their office to be exceptional service-wise in terms of prompt responses to emails/questions (including insurance queries), and that is very important. Also, in my case, my daughter lives nearby so we could at least consider my appointments to be family visits/vacation.

Meyers is very expensive and does not take insurance. But all this means is that he is out of network, so it may be that you might still get reimbursed if you send the bills in to your insurance company. I guess that's something you need to check out.

I'm not convinced it would be much cheaper due to a tax deduction. That depends on your situation. If you don't itemize, then no deduction. If you do, it still needs to exceed a certain percentage of your income (I think that percentage goes up in 2012?).

Bottom Line: If you feel you could reasonably afford it, he is certainly one of the best.

Suggestion: Check out the Ask Dr. Meyers web-site and view his videos. See what you think. It will give you an idea about what he might suggest. Also, ask yourself this: would you be willing to follow his probable suggestions. You will pay good money to see him. Will you truly be able to follow a Medit. Diet, for example. Would you be willing to travel to Sand Lake or wherever he might send you for imaging (if he suggests that)?

Mel

Myers does not keep his theory's or recommendations secret.. He has written several books on the subject and those books can be had for a lot less than $2000....That way, you will have a pretty good idea of what he is likely to recommend should you decide to make an appointment with him...

I'm seeing Dr. Haas on Thursday at 4pm in West Philly. I'll definitely post on that.

Onca, did you get diagnosed with metastatic bone involvement back in 2009? I'm very widespread, so seeing that you were able to keep up the fight for 3+ years so far is very encouraging to me.

John,

I didn't present with bone mets until last June and my PSA has never been over 10. My cancer is very aggressive and I have been through surgery, radiation, clinical trials and recently failed ADT3. I am now moving on to second line HT. I have not experienced any SRE events but I am widespread and occasionally symptomatic. Your astronomical PSA suggests that your disease is not necessarily a negative especially when it comes to treatment selection and response. Jerry L is offering sound advice re Snuffy Myers. If you can afford it .. do it. Email me if you want to chat.

Jim

What if,
If you don't hear from them via email, give them a call. They will get back to you. We had some difficulty at first , but they were very responsive once we reached them. We have an appointment with him next week.
I'll post our experience after we see him.

The bad communications to his office for the last few weeks are not the norm.  His office got hit with the storms that were in the Virginia area.  I think the office was without power for at least a week.  He also took a vacation recently. 

I have dealt with his office for 8 months.  He has always gotten back to me, although it might take a few days.  Don't get me wrong, I have had my share of being an impatient patient, but I can't think of a time where he didn't eventually get back to me. 

I think it is a good idea to find a local medical oncologist that thinks along the same line as he does.  There is something to be said with having someone local, but using the wisdom of Myers.

I also see dr. Lam. His office is extremely responsive --best I've ever encountered. Emails are often replied to in 5 minutes by his staff or within a few hours when I need him to reply

Mel

Hi John
my husband's situation has some similarities to yours -- his PSA wasn't as high, but he also was recently diagnosed with metastatic PCa, with a lot of bone mets.

His local diagnosing doctor recommended casodex and lupron. We saw Dr. Eugene Kwan at Mayo and he kept Ted on casodex, but used Firmagon instead for the faster start. We did get that choline PET scan available almost exclusively at Mayo. I liked Dr. Kwan -- personable, knowledgeable, through. We just saw Dr. Myers this week for an initial consultation, and Oncas' note above captures my feelings exactly. I'm sure Dr. Kwan is a fantastic doctor, but Dr. Myers was what we were looking for -- someone whose knowledge was so extensive, who was pulling out all the stops, that we could trust him with Ted's life.

Dr. Myers said that although the regimen Ted was on was "the usual," because he was a G9, "the usual" would be undertreatment. He prescribed an elaborate regimen, including elements that make the PCa drugs work better with other medications (Ted has a heart arrthymia and had a stroke five years ago). In fact his office is petitioning the FDA for an exception so Ted can get the absolute best drug for his situation, prior to official approval. This was especially reassuring to me, that he was treating the "whole person" and thinking through drug interactions. I'd read that HT can be a problem if you have an arrythmia, but neither Mayo nor Ted's cardiologist had an answer on how to manage this risk.

We'll be seeing Dr. Myers from now on. I'm definitely sympathetic to the cost in time and money to do this. Our visit cost $2,000 and three days away from home. It's been hard to do right by jobs and kids and cancer (and my sister, who has watched our kids for us while we were on the Mayo and Myers jaunts). But given how serious the situation was, I felt like we had to do whatever we could to improve our odds. And we both walked out of his office feeling like Dr. Myers would improve our odds.

For what its worth, the area is beautiful, so while a DRE and PCa consultation is one of the least fun uses ever of vacation days from work, you can squeeze in some fun and beauty. His office is a short drive from Monticello and some other beautiful, historic sites.

Best of luck
Katie