An update from our recent visit to Dr. Charles Myers

DogLover · New User Joined: 07 Aug 2009 Posts: 9

In August, I posted that my husband's psa was on the rise after surgery and radiation. His urologist said to watch for 3 rises before a biochemical failure was declared. After the 2nd rise, we opted to see the onocologist who visits our small local hopital bi-weekly. We live in a small rural state. This oncologist only has one other "young" patient with prostate cancer. His advise - start Lupron and stay on it indefinately. He told my husband if he were an older man...he'd probably die of something else. But he's young - 53 - and probably won't make it to old age. We elected to find someone with more prostate cancer knowledge, experience with younger guys and hormone therapy. So last Friday after flying 3,000 miles, we saw Dr. Charles Myers. We left him on a positive note with a plan tailored to my hubby's needs. (He had a heart attack at age 45. He was in great shape, did not smoke, have high cholesterol, high blood pressure, or a family history.) He is making more diet changes, adding suppliments and Avodart to his regime. Blood work will be done monthly for 6 months to see if this has any effect on psa. His will take supplemental Vitimin D3 to build that in his system since the hormonal therapy depletes that and can lead to problems there. The plan is to start hormonal therapy in about 6 months and only for 9 months since it increases the risk of myocardial infarction. I wish the distance wasn't as great, but we felt it well worth the trip. Thanks for your support as we tried to decide where to head next.
_________________
Dx: Dec 2007 PSA 15.8 Age 51
DRE bump felt one side
6 core biopsy - 1 positive
Surgery Jan 2008- post-surgery psa 2
Gleason 4+3=7
positive margins and seminal vesicles invaded
No lymph nodes tested
6-08- finished 37 treatments of sal. radiation
PSA dropped to 0.2 February 2009
PSA up to 0.9 August 2009

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

I am very interested in the length of your consultation, and what test or historic data he considered in recommending treatment.

I also am interested in how you handled any insurance payments and who will prescribe and monitor his recommended treatment protocol.

Thanks

Hawk
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

DogLover · New User Joined: 07 Aug 2009 Posts: 9

Hawk,
Prior to the appointment, we completed a questionaire and gathered copies of the past year's psa test results, reports for his biopsy, ultrasound, bone scan, urologist/surgeon reports, radiologist report, and oncologist report. A couple weeks before the appoinment, he had an ultra-sensitive psa, testosterone total, dihydrotestosterone, and 25-Hydroxyvitamin D. The consult visit lasted 2 hours - never was hurried, and could have lasted longer if we needed. 2 phone consults are included with this first visit. I believe the next yearly visit typically lasts about 1 hour.

Now my husband will have a psa, testosterone, dihydrotestosterone, and 25-hydroxyvitamin D monthly to watch and see if diet, Avodart, and supplements help to slow the cancer growth at all. The hope is that it does and can be used to help maintain remission at the end of ADT. We hope ADT will last only 9 months due to my husband's prior heart attack and damage, but only time will tell. Through this forum and HW seems most guys have 2 - 3 years of ADT. So...that is a concern for me. Which is the correct treatment time? I felt sick to my stomach as I read your reply to the posting for Dr. Myers - something to the effect about other doctors not feeling the support for his passions or methods. We all want to pick the right doctor to extend the life of our loved ones. Did we? I don't know.

Payment - Dr. Myers' office does not file for insurance. So I just sent it off to our insurance company Monday. We'll see - and I'd be happy to let you know what happens with that. I guess in our state we felt the treatment was one size fits all method. I don't think the advice or treatments were incorrect by any means. But after both the surgery and radiation failed, we just felt we needed to find someone with more experience with ADT. Hope this answer your questions.
_________________
Dx: Dec 2007 PSA 15.8 Age 51
DRE bump felt one side
6 core biopsy - 1 positive
Surgery Jan 2008- post-surgery psa 2
Gleason 4+3=7
positive margins and seminal vesicles invaded
No lymph nodes tested
6-08- finished 37 treatments of sal. radiation
PSA dropped to 0.2 February 2009
PSA up to 0.9 August 2009

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

Doglover,

Thanks so much for the quick, concise response to my questions. When I first got a PSA reading years after surgery, I was in contact with Dr. Meyers office by phone. Since then I had salvage radiation and the indication is that I may not need further therapy, at least in the short term.

When I discovered he did not take insurance I was a bit put off by such an unusual practice. I do find him interesting and the fact that he has PCa certainly indicates he must have a passion to learn all he can about treatment. The length of consultation is also a good sign.

I am very interested in the insurance and cost factors so an update on that will be appreciated. It is difficult to understand his reasons for not handling the customary insurance filing. It just hits me as an OVER emphasis on money and a possible concern that insurance may consider some of his treatments to be questionable. I could be wrong.

The doctor at Sloan-Kettering that I asked about Dr. Meyers has his own perspective. Sloan is a MAJOR research center filling several blocks in Manhattan. As such, they want to see unbiased, controlled, research data to support any treatment protocol. Individual stories (anecdotal accounts) do not impress them. That does not mean they have all the answers.

Thanks Again

Hawk
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

DogLover · New User Joined: 07 Aug 2009 Posts: 9

Hawk,
I forgot to mention that Dr. Myers specifically asked us if we had a doctor on our home base to support treatment. The local onocologist knew we were going for a second opinion, and helped to gather the documentation prior to the consult. He or the urologist would administer the Lupron shots. Both are use to working with Seattle doctors on difficult cases. We'll work through our regular MD for the monthly blood work, but Dr. Myers wrote scripts for these and we've checked at the hospital...no problem having the work done.

I suppose the most "questionable" part is the diet and supplement change. I have read views from both sides on this site and HW. We happen to be beef ranchers. Yet we are willing to see if limiting "corn fed" beef or any red meat to once every 2 weeks makes a difference for my husband. Interestingly enough, my husband is to avoid the red meat but can drink red wine. I've had breast cancer, but I CAN eat the red meat, but no alcohol, says Dr. Myers. That matches what I've read from other medical experts.

I think the insurance deal is just that it takes so much time and money to deal with in a doctor's office. They just elect to have the patient handle it. I can't really blame them! More information when it becomes available.
_________________
Dx: Dec 2007 PSA 15.8 Age 51
DRE bump felt one side
6 core biopsy - 1 positive
Surgery Jan 2008- post-surgery psa 2
Gleason 4+3=7
positive margins and seminal vesicles invaded
No lymph nodes tested
6-08- finished 37 treatments of sal. radiation
PSA dropped to 0.2 February 2009
PSA up to 0.9 August 2009

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 249

Hi,

I too, am following and very interested in Dr. Myers consultation and financial issues.

When Hubby wasn't improving, I called Dr. Myers office and was told about the money (cash upfront) but had a totally different 'experience' with the person on the phone.

As I gave her a bit of his history, his Gleason 9, systemic findings etc, she sounded sympathetic but def gave me the idea that it probably wasn't worth the trip. BUT not in those words, just her demeanor changed when she knew it was not contained.

She did sent me further information in an email but I haven't pursued it, mainly because I got the feeling that it would probably be a wasted trip for us.

That's when we (Hubby) decided to go ahead with his SRT here at home.

We've had 2 doctors tell Hubby that he's not going to make it for long.
One SOB even said "I'm not using ANY resources on you!"!!!

2 others have indicated that he could live another few years or ten.

Very confusing this Prostate Cancer....can't plan for anything as you just don't know how it's going to play out. Ever.

Just how I feel but I am very interested in how Dr. Myers helps your Hubby...we could still go if it looks promising. Thankyou.

Best wishes, as always,

Jean

Gordy650 · Regular Joined: 31 Oct 2009 Posts: 10 Location: NJ

Jean222-

Are you aware of M D Anderson Cancer Center in Houston?

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